Coping with Autism

Moving to WordPress

2010-07-27T21:49:00.004-04:00

I've finally gotten around to moving the copingwithautism blog over to WordPress. Unlike my politics blog, this is currently a WordPress.com blog. At some point I hope to purchase a web address for it and have it set up for independent hosting but at this point WordPress.com is a start. The new address is copingwithautism.wordpress.com.

I'm so inconsistent!

2010-07-23T16:37:00.002-04:00

I apologize for being far more inconsistent than I thought! The last post here was in February(!) and so much has happened since.

Nathan improves daily and we have seen an explosion in speech, pretend play and social skills. We suspect that he will always have some autistic characteristics but he is doing very well.

Peter is improving too! While his speech abilities are still on the level of a maybe a 2-year old, he is using pronouns correctly about 75 percent of the time and he is beginning to use adjectives in describing things such as, "I want water, cold water. I want cold water." (This was a request just from this week.)

We also went to Disney World again this year and I will post more on this later today or tomorrow. Nathan's birthday is Monday and I want to write more about how excited he is about this as well as his requests for toys and such for his birthday presents.

Blog Updates

2010-02-16T21:00:00.002-05:00

I'm hoping that over the next few weeks I will be able to convert this blog to a WordPress Blog also. I did that with my politics blog and love what I am able to do in WordPress. If I am able to do the update, this blog with stay up for at least a year to redirect everyone to the new site.

Update on Christmas Presents

2010-02-16T20:52:00.002-05:00

The spinning top I bought for Peter was a huge hit but it couldn't hold up to his abuse and was destroyed inside of a week. He kept it around as long as he could but when it fell apart, it was basically shaped sheet metal so there were sharp edges that prevented us from keeping it past a certain point of destruction. But Peter did love it.

Nathan, of course, loved just about everything he received. The light saber/swords I bought broke within the first week also but the boys continued to play with them anyway. Nathan loved a put-it-together-yourself Handy Manny toy and still carries it around from time to time.

Nathan's newest obsession is R2-D2. I bought them the LEGO Star Wars game for the Wii for Christmas and Nathan is head over tails for R2-D2. Now he wants R2-D2 this and R2-D2 that. He even wants to build one a life-size working robot (uh, no, not happening--too expensive).

More on Oxytocin

2010-02-16T20:35:00.002-05:00

More evidence is coming out about Oxytocin as a possible treatment for autism. I don't want to use the word "cure" because I think a healthy dose of optimism should be tempered with a healthy dose of caution. The Washington Post reported on the story today.

Oxytocin is also known as the pleasure hormone because we release under certain cirmcumstances. It's also released by a mother's body during delivery because it causes muscle contractions.

I think for some children it could be a great help. I know my son Peter engages in all kinds of stimming activities and if we could calm those down and get him to focus, he is capable of so much more. He's already reading and doing well in school. His teachers and therapists all agree that his speech and focus are his biggest challenges. Oxytocin has the potential to help with eye contact and possibly even stimming.

There is hope!

Christmas Presents for Children with Autism...

2009-12-24T21:03:00.002-05:00

Mmmm... this is always a challenge. Nathan is getting easier to buy for. We have seen such an improvement in him it is astonishing. He still over-focuses, hand-flaps and has speech problems but he's interacting with others, playing, starting conversations, etc. It's fantastic!

Nathan is getting cars, a "light saber" that lights up and Play-Doh.

Peter as always is so much more difficult to buy for--he wanted books this year since he is reading but I'm not sure he will enjoy them as much as I would hope he would. I did find a choral spinning top at a Tuesday Morning store. It's big, about eight inches across and as you spin it (ah, spinning--what a wonderful thing for an autistic child!) it "hums" in chords. It's great and I think he will love it. They received other things as well but we'll see what happens tomorrow.

I'll let you all know what the hits were.

Oxytocin as a Treatment for Autism?

2009-10-21T22:52:00.003-04:00

Doctors at Duke University have found a connection between autism and the body's ability to recognize and untilize the hormone Oxytocin.

Check out the story at Science Daily.

Disney World with Autism

2009-10-20T20:16:00.005-04:00

I've been meaning to write this for quite some time.

We did well in Disney World and it was due to a few things:

1. For every child with autism, you need at least one parent, grandparent, aunt, etc. to help corral or monitor where each child is and what they are doing.

2. Get a letter from your child's doctor stipulating that he or she has autism. As soon as you enter the park, go to guest services and let them know that you need a Guest Pass for your child. This pass allows your child to go into the express/fast pass line or the disability line for nearly all of the rides. The pass allows for five other guests to ride the ride with the person who has the disability. We had two letters and two passes which allowed us to have as many as twelve people enter the express/fast pass line. The child with the disability has to be with the group entering the fast pass lane. Disney cast members will check for the Guest pass.

At first we didn't think we would need the Guest pass because the boys are pretty good about being patient. We quickly discovered that Peter needed constant stimulation and once we were off a ride he wanted to "do again" so we had to keep him moving.

3. Use some kind of tracking device. I put a mini backpack on each boy that also had a tether or "leash." I hate leashes on kids but I would rather have a lease and my child than have one of them terrified, wandering around the park and with little ability to communicate to others.

We only had one person comment and that was to my father-in-law (thank goodness, I probably would have displayed a less Christian response, I'm afraid). My father-in-law shrugged it off and kept going. The woman, of course, didn't know the boys were autistic and commented to my father-in-law that we could get in trouble with the law and park authorities for "leashing" the boys. Bah! but I would have gotten mad anyway.

4. Pin some kind of identifier to their shirt. Some parents recommend writing their cell phone number and name on the child's arm but Nathan is allergic to Sharpie/ permanent marker (it causes his skin to raise up in welts) so this wasn't an option for us.

5. Make sure you stop to eat and get drinks frequently. We tried to make sure that hunger or thirst didn't cause a meltdown.

6. Nathan was still small enough for one of the large toddler strollers so we alternated renting a double stroller with my sister-in-law and brother-in-law whose daughter is just a little older than Nathan. She and Nathan shared the double stroller but, since they a best friends, they loved it.

Since Nathan is a slow walker (he's still slow from being a late walker) he has a hard time keeping up with a group and tires more easily. The stroller worked out for him.

7. Don't push your child. Remember, Disney World is for them as much as you. Enjoy taking the time to re-ride rides they really liked.

8. We bought one of the unofficial guides to Disney World (I gave my copy away but I'll look for a copy in the bookstore and let you know which one it was). The authors included plans for tackling the park based on a wide variety of scenarios. For example, if you are a couple with young kids, they assume you'll get there at ten the morning. They'll tell you to ride Dumbo first, etc.

This book also gave a rating system for each ride so we knew what would work with each child and what wouldn't. This was great! We immediately knew what rides we had to say "no" to because of loud noises or darkness, etc. There were a couple of things I had to sit out with one of the boys or leave early but overall they rode a lot of the rides.

My only regret was letting my husband take the boys on the Tower of Terror. I recalled that it was scary, my husband didn't remember it being that bad. I stayed behind because I hated it and remembered feeling like I was going to fly out of the seat (the last time I rode it, I weighed 115 pounds and at five feet I don't fit the "average" safety harness). As soon as he and the kids walked off, I went after them to get the boys but I was too late--they had entered the fast pass/disability line and I couldn't get in.

Peter got off the ride and acted as if he had just taken a walk down the sidewalk--absolutely no reaction. Nathan, on the other hand, came off terrified, he cried and cried. Of course, my husband's reaction to the ride with kids was completely different. He realized, too late, that from a kids perspective, the ride could be terrifying. So, next time, no Tower of Terror.

Other than that, Disney World was a blast and the kids had a ball. We are planning to take them again either this summer or next.

Genetic Link for Autism?

2009-10-07T18:42:00.003-04:00

I have strongly felt that there was a genetic link for autism but the focus on immunizations seemed to take the focus off of this kind of research. Today, U.S. News and World Report is reporting that scientists have found that an error on a gene may be related to autism.

Scientists studied the DNA of familys of those with autism, those with autism and then a control group of people without autism. They found a significant difference.

In our family alone we have two with autism and one with ADHD. My husband is suspected of having had PDD-NOS as a child. We have a niece on the autism spectrum as well. I have no doubt that there is a genetic link--the question we face now is what are we going to do about it?

Education World® : School Issues and Education News: Sports Offer Autistic Kids Physical, Social Benefits

2009-10-07T18:26:00.001-04:00

Education World® : School Issues and Education News: Sports Offer Autistic Kids Physical, Social Benefits

Shared via AddThis

Same Child, Different Day

2009-08-18T15:49:00.003-04:00

I received an e-mail from the father of a child with autism and he has written a book about dealing with autism the first year after diagnosis. The website is Same Child, Different Day (I love the title--it fits so well.) Excellent idea, I thought of doing something similar and had not heard of his book until now. Now that I have, I am going to put it out there for anyone needing to know what it's like to deal with all the surprises following an autism diagnosis.

Jon's e-mail reminded me that I have neglected this blog dreadfully and plan on updating it very soon. We went to Disney World for vacation for the first time with the boys this summer and I have tips and suggestions for making the every day run smoothly (always a plus!).

MSNBC on the Cost of Autism to Families

2008-12-02T19:56:00.001-05:00

MSNBC posted this article yesterday on the cost of health care and related services to families dealing with autism.

Oh, My!

2008-09-15T21:21:00.002-04:00

Okay, I've gone back to work-- teaching (what was I thinking!)-- and the kids are all in school.

Peter is doing well mainstreamed. He is based out of an autism classroom and he and couple of other kids from his class spend nearly all day in a regular kindergarten class with a paraeducator. Peter has surprised his teachers by knowing his numbers, shapes and letters. He has also surprised them by knowing how to write his name. Communication skills are still not great but hey, every little bit helps!

Nathan is doing well. He is in a reverse class at the public school. They are trying to see if they can move him into a regular kindergarten class next year. He's three days a week there and two days at the private school my daughter attends and where I teach. He's doing very well in both places and everyone thinks my little stinker is a joy (go figure-- he is a cutie but he can be a stinker too!)

All in all, we doing okay so far.

UVA Child Psychology Experiment

2008-07-31T15:07:00.004-04:00

Today, we went to the University of Virginia's Child Psychology Department to do a quick computer test for an experiment they are conducting with autistic children.

The test consisted of alternating screens of nine pictures-- eight of different kinds of frogs and one of a snake. The boys were asked to identify the snake on each screen. Then the pictures would shuffle changing their location on the screen and the type of snake shown.

Nathan decided he didn't want to do it after a couple of screeens. Peter was able to complete the experiment but every three screens was rewarded with being able to open and close the door to the room (he was very stressed by the new location and opened and closed doors repeatedly when we got there).

Peter got a few screens wrong and instead of a snake picked a frog. But I noticed that he was trying to do the screens really fast and some of the frog colors (particularly red) resembled the pictures of the snakes with the same colors if you just glanced at the photo. It was funny because when he touched the screen and picked the wrong picture he would pause and look at the screen again (which had moved on and shuffled the pictures) as if he realized he was wrong. I think most of the time he knew when he had picked the wrong photo but it was always after the fact.

UVA told me that the purpose of the experiment was to see if children with autism could identify threatening or scary objects as easily as neurotypical children. It was interesting to see that Peter could identify the snakes but it seemed he did this almost as much by color as by shape.

Plodding Along

2008-07-30T08:56:00.003-04:00

I think we have figured out what has caused Peter to become obsessive over doors. While we were on vacation last week, he was especially bad about opening and closing doors. And family members I thought were accustomed to his "oddities" repeatedly asked him to stop.

That like trying to repair a dam with a tube of Elmer's Glue. It's NOT going to happen.

Other family members, who see him infreqently because of distance, were even more bothered by Peter and Nathan's tendencies.

Needless to say, I was stressed out and dealing with ulcer symptoms every night for most of the week.

My husband and I are discussing alternatives for next year. Obviously, vacationing with family in the same house will not work any longer and, while this is a sad, our obligation is to keep our sons safe and calm.

But because of the stressful week, we noticed when we returned that Peter wasn't as obsessive over door opening and closing. I think he resorts to it for two reasons: first, out of boredom and second, and primarily, for the stress reduction.

Boredom: School's not in right now and he doesn't have as many activities during the day as he did before.

Stress reduction: Again, school's not in right now and he doesn't have the highly structured day he did there. Also, he has stopped using his weighted dog and pacifier to calm himself when he gets stressed out. We've noticed as well that Peter seems to be bothered by loud noises more than we thought. Maybe I should say that he has always been bothered by loud noises but his reactions were relatively mild. Now, he is responding in a much stronger, more tantrum-like manner to really loud and noisy situations.

We're going to work on providing him with more structure until school starts in a few weeks. Up to now, I really thought he didn't mind the looser structure of summer and he might not have at first but it seems to be really bother him now.

Nathan is adapting very well although both boys had their "quirks" at the beach house. Nathan just wanted to play with everyone else's toys and look through their stuff like he was at a thrift store or something. I think he's just curious but family members started locking their bedroom doors toward the middle of the week.

We were in a three-floor beach house with three other families and our bedroom area was on the bottom. The kitchen and family room were on the top floor so you can imagine the distraction Nathan must have felt walking up through the second floor where the three other bedrooms were (with toys!) to get to the top.

Also, the three-floor-three-staircase setup made it hard to keep track of both boys. One would be playing upstairs with cousins and the other would want down time and would go down to our rooms all the way downstairs. In those situations, my husband would often accompany Peter to the bottom floor and play with him or put in a video like Signing Time for him to watch. I would stay upstairs with Nathan to make sure he didn't escape out the front door or try to break into someone's room to find the Lightning McQueen car one of his older cousins had.

I know that vacations will always be a challenge but we had challenges with this one we weren't expecting. While they weren't dangerous or anything like that, they were stressful for all of us.

Peter's Stimming

2008-07-10T23:59:00.002-04:00

We're having some serious issues with Peter's latest stimming technique. Opening and closing doors repeatedly has gotten not only extremely annoying but also distracting for Peter. He's not focusing as well as he was--he would rather open and close a door.

If you can get him to focus, he's using more complete sentences and giving more information when he does speak. It's getting him to focus that's causing the biggest problem. I feel like I did when he became obsessive over the computer. Problem is I could turn the computer off-- I can't take all the doors off their hinges!

Argh!!

So Sorry for Not Posting More Frequently

2008-06-28T11:40:00.002-04:00

I'm starting a new job in the fall and I've been frantically trying to keep up with my political blog, my writing and the boys while preparing for the job. I'll be teaching at my daughter's school (it's a private school although I am required to apply for certification) and working on my writing still. I will try to keep up with my blogs.

Peter's Latest Stimming

2008-06-28T11:34:00.002-04:00

For those of you who are unfamiliar with the term, "stimming" refers to self-stimulation and it's what children with autism do to keep themselves calm. For Peter, in the past he has run back and forth or spun in circles repeatedly. For some children, it's playing with string or turning the wheels of a toy car so that the wheels spin repeatedly.

Peter's latest stimming technique is door opening and closing. Over and over and over and over. . . well, you get the idea. Nathan, fortunately, doesn't stim to the same obnoxious degree as his brother. Nathan likes to line things up or he'll hand-flap when he's excited. Peter has to physically involve himself in his stimming and the doors are the latest in what I am sure will be a life-long issue.

Nathan: So Close!

2008-06-16T19:50:00.004-04:00

Today, Nathan's private speech therapist finished her annual evaluation of him. On the evaluation scale, the bottom range of normal is 85. Nathan scored a 72! This is a far cry from two years ago when they couldn't even complete the test because he wouldn't respond.

Maybe in a year, he'll be doing so well they'll discharge him from Speech therapy!

No Synostosis Worries for Nathan

2008-06-05T11:09:00.003-04:00

I completely forgot to mention that I spoke with Dr. Tye's office about Nathan's head. He does not have synostosis of the sagittal suture.

When I was reading up on synostosis, I found out that it can be genetic in nature so, being paranoid at this point in time, I checked Nathan's head. I found that he also has a ridge up his forehead indicating early closure of the metopic suture. So I took him to his doctor who ordered X-rays and you can see the ridge leading to the anterior fontanelle but I couldn't tell past that point what was going on. (It didn't help that Nathan was uncooperative during the X-rays). The X-rays were sent to Dr. Tye (who at this point must be an expert in wiggly-child X-rays) who assured me that Nathan did not have closure of the sagittal suture like Peter does. Whew! Talk about relief! Worrying about Peter is enough.

Last Day of School Tomorrow

2008-06-05T10:58:00.003-04:00

Tomorrow, Peter and Nathan are finished with school for the year.

As I mentioned in a previous post, Peter will be mainstreamed (gulp) into kindergarten next year. Nathan will likely be placed in a "reverse" class (his teacher has made this recommendation but the school system is completely restructuring the special education classes so I'm not sure where he will be placed). A reverse class sounds like what it is-- it is a class that transitions or reverses a child out of the special ed program and into a regular classroom setting.

Nathan will likely always have little "quirks" but he is doing a thousands times better than he was two years ago. He's still behind his peers developmentally in several areas but he's catching up very nicely.

Peter is still behind as well but he too is doing much, much better. He finally starting to starting to say things in the first person-- instead of "Do you want more milk?" He has started to consistently say, "I want more milk." He's also trying to engage in play more. He still doesn't initiate play but I'm hopeful that a class full of neurotypical kids will give him behavior examples he can learn from.

No Surgery

2008-05-22T18:00:00.003-04:00

Sorry, for not posting earlier. Our computer crashed and while I am up and running again, we are borrowing a relative's older computer while we figure out what to do with ours. This unit doesn't have half the programs as ours does and so it's taking a while to get back up to speed.

As for Peter: We saw Dr. Ben Carson of Johns Hopkins on the 9th, he agreed with the team at MCV that the cure was worse than the condition at this time. He did add that Peter's CT scan shows that there is currently room in his skull for growth of the brain. Dr. Carson, like Dr. Tye, warned us of what to look for if Peter should start to experience intra-cranial pressure (ICP) but otherwise reassured us. He felt that Peter had a very good prognosis.

The thing that reassured me the most was that Dr. Carson mentioned that Peter currently had space showing for growth. I've been so aware of the fact that with the least bit of growth we could be looking at ICP but hearing that he has available space was what I needed to know.

Peter's Placement Meeting

2008-04-18T09:53:00.006-04:00

Yesterday, I met with Peter's teacher, the autism teacher for the school he will attend for kindergarten, a kindergarten teacher for the school he is currently in, his school speech therapist and the county special education coordinator. The meeting was to determine where Peter will attend kindergarten and under what conditions.

Peter was with us and very politely sat at the table drinking water with the adults while his brother played with the toys in the classroom. Everyone was so impressed and I think this swayed the county special education coordinator to recommend that he be mainstreamed. I really didn't have a reasonable objection other than I am nervous about how he will do.

Of course, Peter's behavior at the meeting wasn't the sole basis for her decision. She asked me dozens of questions and she asked questions of Michelle (his teacher) and Aline (Peter's speech therapist through the school) about his behavior in school, how he handles classroom activities, transitions, noise, following directions, etc. She asked about his academic progress and we all explained how much and how well he knew things. We also noted that he is starting to read but that phonics may not help him much. He's too literal and seems to be learning to read by sight.

His speech is continuing to improve. He is starting to ask questions in first person instead of third when he wants something. For example, instead of saying, "Do you want more milk?" when he wants milk, he's beginning to say, "I want more milk, please." It's not consistent but I've noticed that with Peter, once he starts to progress in an area, the new skill picks up speed over a few weeks or months until it's fully incorporated.

I'm happy that they feel Peter is capable of attending kindergarten but nervous about it all the same. He will have a helper with him for all of the academic work (about 4 hours a day) so he can have one-on-one attention which seems to be the best way to get him to concentrate on learning. His teacher will direct his playing, lunch and other unstructured activities thereafter.

The teacher sets the tone and I haven't met her so I'm worried about how accepting she will be. Rachel, the autism teacher from what will be Peter's school, assured me that since her hiring in January, she has visited many of the classrooms to explain to students what autism is. She assured me that she has seen a tremendous difference in how both the teachers and students in the general education classes respond to students with autism. They are much more accepting.

As she mentioned, education is the key to understanding.

Not Again. . .

2008-04-08T17:55:00.003-04:00

Okay, cranial-synostosis of multiple sutures is frequently described as having a genetic basis so, being the paranoid mother I am, I checked Nathan's forehead and, lo, and behold, the boy has a ridge along his metopic suture.

I called the pediatrician's office and made an appointment for this morning. And just as I thought, the pediatrician felt the ridge too and ordered an x-ray. The radiologist's report said that synostosis was indeterminent meaning he didn't see anything. However, the radiologist's report on Peter didn't mention his metopic suture either. So the pediatrician wants Dr. Tye, the neurosurgeon at the Medical College of Virginia (MCV) we saw with Peter, to take a look at Nathan's x-rays.

Dr. Childress, the pediatrician, is faxing the radiologist's report to Dr. Tye and I'm picking up a CD of the x-rays from the imaging center tomorrow to send to Dr. Tye's office. This may come to nothing but if both boys have synostosis it could be syndromic and the geneticist who tested the boys will need that information. It could also help in future autism studies.

What this means for Nathan and Peter is unknown at this time. We are hopeful that having the information will give us more in our arsenal against autism and maybe help some family in the future.

Jeremy's Doing Well

2008-04-08T17:53:00.002-04:00

Jeremy's mother reports that he is doing very well and is already showing signs that the intra-cranial pressure he was experiencing was contributing to his developmental delays. Now that the ICP has been alleviated by the surgery, Jeremy is more social and trying to talk.

Jeremy's Surgery

2008-03-31T16:30:00.005-04:00

A little over a week ago, a perfect stranger e-mailed me to ask me to please get a second opinion about Peter's surgery. Well, you don't just shrug off something like that. You think, "Okay, as much as I like Doctor So and So or the the CF Team at Such and Such Hospital, maybe, just maybe, God is shouting in my ear."

So, with her encouragement, we've set up an appointment with Dr. Ben Carson at Johns Hopkins (I mean, really, how do you top one teaching hospital? Go to another.) We have an appointment with him on May 9th, the only problem is he doesn't take our insurance so at this point we're paying for the appointment out of pocket ($276.00) and hope our insurance covers part of the bill. Either way we'll get his expert opinion and go from there.

In case you are interested, the woman who e-mailed me has a 16-month-old son with metopic suture closure. His operation is going on as I write this and I hope Jeremy will be out soon with a round head-- albeit with lots of swelling-- and that his developmental delays will be alleviated or even eliminated. He had a great deal of intra-cranial pressure so reconfiguring his vault (what surgeons call the skull) will give his brain the space it needs and relieve this.

The Last 24 Hours

2008-03-29T21:02:00.017-04:00

Have driven me nuts. Yesterday, I went with the boys to pick up a few plants for the flower bed (they're always digging so I thought "why not") and we came home and planted them. We had just finished when Nathan found my wallet with the attached house key. He then went in the house and locked the door. I tried to get him to open the door or unlock the door-- anything-- but nothing doing.

I checked the van (I had the car key and the phone with me) for a spare house key. Gone. Probably got used by me or Gabrielle and never put back. So after about 10 minutes of trying to get Nathan to unlock the door, I called my mom to see if she had the spare key with her. No, it was at the house but my dad's retired so she called to see if he could bring it over.

Here we were twenty minutes later, dad was about 10 minutes away. Nathan was finally realizing not only that he was by himself but also that I couldn't get in. He was starting to cry when he finally got the hand strength to open the door. Hurray!

But the day is not done.

Later, my mom comes over after work to pick up my niece's schoolwork. Apparently, she was out sick today and she and Gabrielle are in the same class at school. My mom was going to run the schoolwork over to my sister's house. Well, Gabrielle runs out to the van to get her bookbag but comes in with the stuff from her bag instead of bringing in the bag (only my daughter could make her life more difficult like that but anyway,) she brings me everything and I set it on the back of the couch where Mom and I were standing and talking. We look through it all and decide that their teacher forgot to send the work home, etc. Mom leaves.

Fast forward about two hours. Gabs needs to go to Tae Kwon Do and we're getting stuff together. Where is the car key? I don't remember Gabrielle giving it to me. She can't remember what she did with it. She locked the van and she's pretty sure she used the key to do so but she can't remember.

Oh, and during bathtime last night the boys flooded the bathroom (and subsequently, the kitchen) used up a whole bottle of my shampoo and a half a bottle of their father's bathwash. This while Gabrielle was supposed to be sitting with them while I hunted outside for the key. She got distracted by the television which was supposed to be off. I know better but I still thought, "She can watch them for five minutes while I look for the key." Oh, how wrong I was.

I called AAA this morning (we missed TKD last night and I didn't want to be putting the kids to bed when the locksmith came so I waited until first thing today) and a gentleman came and unlocked the van for me. I looked where Gabrielle's bookbag was and no key. No key on the floorboard or in the bag. Great. The car alarm is going off and won't stop unless I have the key and I can't find it.

The nice man disconnects the battery for me so the alarm cuts off.

I call the dealership thinking that with the VIN number they can cut a new key and we can take my husband's car and pick it up.

They ask, "Is your key base black or gray?"

"Gray," I reply.

"Oh" says the man, "I was afraid of that."

Oh, what now??

Apparently, the gray base means that the key has to be programmed to open the lock.

What?!

Which means the car will have to be towed to the dealership.

(I'm thinking that my Triple-A membership has paid for itself now.)

Instead of towing the van, we give it one last college try and hope over the weekend we can find the key. (BTW, the boys lost the other key to the van in January). If we can't find it, we'll have the van towed to the dealer on Monday and go through the expense of having new keys made and programmed for the car.

About thirty minutes ago, Gabrielle found the key. Under the couch, where I had looked. I must not have moved the couch all the way or it was kicked under there from somewhere else in the room but--yippee!-- we have ignition.

Or at least we will when I reconnect the battery.

And Monday, I'm dropping off the key and getting another made. Maybe two. Just in case.

Chevy and Autism Speaks Team Up

2008-03-26T12:47:00.003-04:00

I received an e-mail letting me know about an easy way you can support autism research and services. Chevy has teamed up with Autism Speaks to raise awareness of autism during the month of April which is Autism Awareness Month.

For every person who takes a virtual tour of the new Chevy Malibu, Chevy will make a donation to Autism Speaks up to a million dollars.

This a very easy way to support the work of researching autism. According to the GM/Chevrolet press release:

During April – Autism Awareness Month – people who go to the Autism Speaks website (www.autismspeaks.org), can click on the “Help Chevy Help Autism” icon and take a free virtual test drive of the 2008 North American Car of the Year – the all-new Chevy Malibu. Chevrolet has committed to a minimum contribution of $500,000, but every virtual test drive taken gets Chevrolet closer to its goal of donating up to $1 million to Autism Speaks to support its mission of increasing awareness of autism and raising money to fund autism research. Those who participate in the virtual test drive will be offered a free 30-day online trial of XM Satellite Radio.

I took the tour and it took less than two minutes. Two minutes could change the world for a child in the future. Please take the time to take the tour.

And thanks.

Oh, What a Day!

2008-03-21T23:22:00.007-04:00

Well, day one of Spring Break has ended not so much with a bang as with a whimper (mine!)

My husband's parents stopped by on their way back home after visiting my sister-in-law and her family in Georgia. We thought they were staying the night so I was frantically trying to re-clean things that I had already cleaned earlier in the week. (Three kids + two with autism + Spring Break = Great Big Mess)

While sorting papers (ironically, mostly the boys' paperwork), Peter and Nathan decided to play in the upstairs bathroom (what is it with autistic kids and water??). Their idea of playing in the water is to clog (a clean) toilet with wipes, pour in a brand new bottle of shampoo and flush-- repeatedly.

I realized that a) the downstairs was too quiet and b) I was hearing what I thought was just the washing machine in stereo. While running into the kitchen, I yelled for Gabrielle to run up the stairs to stop them-- I was just in time for water to begin pouring down over the sink in the kitchen. I've honestly lost count of the number of times these two boys have flooded the bathroom.

And before you ask, yes there was a lock on the bathroom door but the oldest child in the house (that would be the 15-year-old male in the 40-year-old body) broke it by horsing around and I haven't had a chance to figure out how to fix it. I've been trying to remember to put a gate up but that doesn't help someone in desperate need of the facilities.

Anyway, I just keep telling myself that we bought the townhouse in the first place as a fixer upper. We keep fixing it up so it's fulfilled our expectations several times over.

No Surgery-- For Now

2008-03-18T11:03:00.006-04:00

In what was, to us, a surprising turnaround (sounds like an intro to the sport's news on your local network), doctors at MCV have decided that Peter does not need the surgery, at least not now.

The following is from an e-mail I sent today to friends and family:

The doctors at MCV have agreed that the cure is probably worse than the condition at this time. The surgery is extensive and in an older child the recovery is harder and painful. Peter shows no severe bossing (which is when the skull deforms and sticks out trying to accommodate the growing brain) that’s easily seen (his hair covers it—so no more crew-cuts for Peter) so the doctors and cranial-facial team would rather monitor him over the next few years to keep track of his skull growth.

Next year at this time, Peter will go back to MCV and see the neurosurgeon, Dr. Tye, and the cranial-facial team. In many respects, this is a relief but, like the sword of Damocles, it still hangs over us. We have to watch out for symptoms of intra-cranial pressure just as before. But since his brain has, at this age, completed about 70-80 percent of its growth, the doctors are hopeful that we won’t have to put Peter through any reconstruction of his skull and/or upper face. The doctor’s are also confident that if it causes any problem at all, it will be in the form of intra-cranial pressure and not a worsening of his autism.

I’ll get an official report from the team nurse by phone on Friday and then a paper version of the report in the mail shortly after that. Continue to pray for us, as I said, this is not over and can require surgery in the future-- or not. But the team of doctor’s we met with was very knowledgeable and we feel comfortable with the decision for now.

. . .Thank you to everyone who was praying for us throughout this long wait. We continue to ask for your prayers.

Thank you to all of you who had us in your thoughts. We're not completely out of the woods but, for now, Peter is not in need of surgery.

D-Day (C-F Clinic)

2008-03-16T14:41:00.004-04:00

Well, tomorrow is it. My husband and I are both nervous about what to expect at the cranial-facial clinic. We think Peter will be okay as far as the stresses-of-the-day are concerned. But you never know with autism-- so we're praying that he's cooperative.

I did talk to the coordinator of the clinic. This is how it works: we get to MCV (the Medical College of Virginia) in Richmond around 7:30 a.m., register, and then proceed to the neurology suites. There we'll camp out in the waiting room and wait to be called back to see a variety of specialists. Peter will see a psychologist, speech therapist, dentist, eye doctor, Ear, Nose and Throat doctor (ENT), etc. Then he will see the cranial-facial surgeon, plastic surgeon and neurosurgeon at the same time for thorough exam that they will do jointly. We'll break for lunch and when we come back the team of specialists will meet with the families individually to discuss their findings.

It's at this point they decide if your child needs the surgery (we've already been told that looks like Peter is "headed for surgery") and what the team's recommendations are for the surgery (how extensive).

Since Peter's metopic suture (the one down the middle of the forehead) closed early causing his trigonencephaly, fixing that is up for grabs. They may decide to fix it too in order to correct some of the triangular forehead look Peter has. His eyes are also a little widely spaced because of it.

If they decide to fix this and the sagittal suture (the one running down the middle of his skull) then the surgery will be extremely intense and recovery longer. The neurosurgeon seems to think that fixing the metopic is cosmetic but another doctor may feel that it will help Peter in another area-- so we'll see. But I doubt they'll want to go that far.

On the plus side, Tuesday is the meeting for Peter's IEP and the plan is still to mainstream him into kindergarten. To increase his social skills, his teacher is recommending school five days a week until the end of the school year. The only problem with this is that it will interfere with his private therapy so we have to rearrange that. All-in-all it will be a busy week.

Monday is D-Day

2008-03-12T22:07:00.007-04:00

Okay, maybe more like C-F for Cranial-Facial day but we've put a great deal on hold until after the 17th so it is a bit like D-Day in that it marks a major date requiring significant, flexible planning (granted, the entire free world doesn't depend on it so that's a load off my mind).

And it complicates things since we don't know what our schedule will be like in the coming months.

When I spoke with the nurse in the neurosurgeon's office before Christmas, she said that she would likely call right before the clinic with a list of suggested surgical dates. I haven't heard from her and rather than be a pest we're waiting until Monday to see what the team says. I am hopeful that Peter won't have to have the surgery but we'll see. The day after the cranial-facial clinic I meet with Peter's teachers, et al. for his IEP meeting. So far, the rough draft suggests that in order to prepare him for mainstreaming in kindergarten they need him to go to school five days a week. Of course, this would start immediately following the IEP, if agreed to, and I would need to reschedule his Monday, 9 a.m. OT and Speech that he takes through Children's Hospital.

But altogether, Peter's speech is picking up again and his therapist at Children's is very happy with his progress.

I'll spend more time updating tomorrow or Friday.

Nathan's IEP

2008-03-05T11:03:00.005-05:00

Nathan's teacher Friday told me that his IEP (annual education goals for an individual with disability) needed to be done by today. She had misread his paperwork and thought we had a whole month before we had to do it. She was so apologetic but I was okay with the short notice so we plunged ahead.

Nathan is doing very, very well. His teacher feels that next year he can continue with his three-day a week schedule in a regular special-ed classroom with the goal that he be moved into a "reverse" class the following year. This kind of class would be a more "normal" class in preparation for sending him to a mainstream kindergarten class.

Nathan has reached many of his goals. Both his teacher and the administrator meeting with us were impressed with how far Nathan has come in the 18 months he's been at the school.

So new goals in the school year are to increase his speech and receptive response, potty training, writing skills, imaginary play, etc. But they've noticed a great deal of progress in all of these areas. He's still not equal to his physical age in development but he's much closer and not as far behind as he was so we're all very pleased.

A Bicycle, A Bicycle

2008-02-27T13:56:00.003-05:00

Gabrielle was given a bicycle for her birthday and when we went to pick it out, we went ahead and bought Peter one too since his fifth birthday is in a little over a week.

He loves the bicycle.

He sits on it whenever he gets the chance (which is quite often since the thing is sitting in the dining room because of the foul weather we've had lately) and pretends to ride. Of course, I've caught him a few times trying to sneak out the door with it to go "ride the bike."

Nathan didn't get a bicycle but we weren't sure if he would be interested. He has expressed some interest but we'll see what happens as the weather warms up. If he tries to take over from Peter or Gabrielle then we'll know he's definitely interested.

"More Juice"

2008-02-22T09:10:00.005-05:00

Peter has picked up on his use of words again. He's requesting things more and using words more frequently to describe things. I think his speech regression was tied to how much time he spent on the computer. Now that we've curbed his obsession with the machine, he seems to be returning to "normal."

Nathan has started mimicking more and that bothers me some. It could be that he's just playing with speech and is repeating what is said to him. OR it could be that he's beginning to do what Peter does. I believe he's just playing around with speech and sounds but it's hard not to worry.

Potty-training is taking off. Of course, I have to harp at the boys about it. They don't usually remember on their own.

We may actually have both boys trained by the time kindergarten starts.

I hope.

At least I think so. . .

Something Unique? Nah. . .

2008-02-11T12:04:00.001-05:00

At therapy this morning another mother of an autistic boy told me that she felt better when she saw me with two boys who were autistic. She told me that one didn't seem so bad when she considered that she could have had two. She then related a conversation she had with a friend about me and my two sons. She and her friend agreed that they didn't know of anyone else who had two autistic boys.

Personally, I know of two other families dealing with two children on the autism spectrum. Granted, we may have a third in our daughter but since she has never been officially diagnosed, I can't officially claim that third one at this time.

Something unique-- no, a little unusual but not unique or even rare.

I am seriously thinking about having Gabrielle evaluated however. And depending on what happens, we may end up in the unusual or "rare" category as a family.

Gabrielle is very bright but some of her behaviors-- very television oriented, short attention span, phenomenal memory, social awkwardness, difficulty sitting still, doesn't seem to notice or care about her personal appearance, etc. are signs that we should maybe be concerned. I thought she would "outgrow" some of these behaviors-- in other words, I really thought that the older she got the more she would learn proper behaviors and eschew the more awkward ones. But that's not the case. In fact, as she gets older, she digs her heels in more and more and we are having some problems changing inappropriate or negative behaviors.

She had a book review due today and she has known about it since Christmas. We had picked out a book for her to review and I repeatedly told her to read the book. Of course she didn't have it completely read when she had to turn in the rough draft two weeks ago and we had a fight over completing the rough draft-- the bulk of the work had been done by the teacher-- and yet Gabrielle still didn't want to do it. Last night she finished the final one-page review that was due today-- after four hours of writing it over and over because she kept making numerous mistakes (at one point she had 25 typos and strikethroughs).

She hated writing the review and hated reading the book. It wasn't the subject-- it was the actual reading she didn't want to do.

If I don't see another book review for a year it will be too soon.

Back on Track

2008-02-08T13:54:00.000-05:00

We're back to our potty training routine. Out main sewer line didn't want to fix itself so we had to call a plumber. Four hundred and eighty-five dollars later (now I know I'm in the wrong business), we had a working washer and toilet.

Peter is doing well if you ask him if he has to use the toilet. Nathan sometimes remembers on his own and sometimes forgets. He's much more random about it.

M&Ms are kind of working as rewards but Mentos are a much bigger hit. My mom is the queen of Mentos and the kids know it so they've become huge fans of the fruit flavored version of the candy.

Going "Commando"

2008-02-03T18:54:00.000-05:00

The potty-training has been progressing. I would say "progressing nicely" but we've had a few setbacks so let's just say "progressing."

We've allowed the boys to go without underwear, if they want, hoping they will be more inclined to tell us they have to go to the bathroom. Peter has discovered that he prefers going without his underwear and has taken advantage of the situation by going "commando" all the time now. Nathan has gone back and forth on the underwear but he's much more comfortable in clothing so this isn't as much of an issue for him.

Our major setback is that the downstairs toilet has been out of order since Friday. We've had so much new construction in the area that the county's sewer lines are overloaded (there is no pun intended here).

It rained on Friday, so as you can imagine, we had issues with our drains and, unfortunately, still are. The downstairs toilet doesn't want to flush (at least I can say we are not acquiring any "water" from the streetside of the sewer lines) and our washer isn't draining. So I can't do laundry-- which I needed to do-- and everytime one of the boys has to use the toilet, we have had to run them up the stairs.

This has not been helpful.

Ah, the best laid plans. . . .

"Being Autistic, Being Human"

2008-01-31T12:33:00.000-05:00

I'm not sure how I missed this but in September, Speaking On Faith, a program produced by American Public Media, did a special on autism. A friend of mine sent me the link to the website.

The interview of Paul Collins and Jennifer Elder looked into their relationship with their son, Morgan, who has autism. Paul Collins, a literary historian, has written a second book on autism called Not Even Wrong: Adventures in Autism. Elder is an artist and author who has written a number of books for chidren regarding autism. Her latest is Different Like Me: My Book of Autism Heroes.

What was funny was that their descriptions of Morgan's behavior reminds me of all three of my children.

My husband jokes that Gabrielle is "all transmit, no receive." She's constantly telling us things that aren't that important and aren't urgent but she gets them in her head and they have to come out. Right then, right there. She can be unaware of social nuance and yet be extremely sensitive and emotional. She's brilliant and gets primarily A's in school (except handwriting) but getting her to do homework ranks up there with telling her she needs to get a shot at the doctor's office. She hates it-- although getting a shot sends her over the edge. She'd rather watch television over just about anything else. She doesn't like to read (which drives me absolutely nuts since I prefer reading over television) and getting her attention is like trying to engage a brick wall in conversation.

Peter has a head for geometry-- he can identify and tell you what an isosceles triangle is, a parallelogram, a trapezoid, an octagon, and a pentagon as well as the common shapes. He also has a fascination with music, numbers and letters. Will he have an extraordinary ability in math or music? I don't know but I know I am fascinated watching his abilities develop.

Nathan has been developmentally pokey because of his PDD-NOS but as he catches up we are seeing that he has a knack for reverse engineering (I worry that when he's older, I'll see the television or computer taken apart!). He also likes to experiment by "mixing" liquids in glasses to see what happens when he does (of course this has the added effect of making a mess). His mechanical abilities are astonishing. We keep joking that he'll be an engineer or chemist.

No matter what happens, I have been privileged to have been a part of this. I have learned so much-- about myself and the human mind, about my children and what it means to give of yourself. I am truly grateful that God has blessed me--truly blessed me--with my children.

We're Losing a Therapist

2008-01-29T00:01:00.000-05:00

Today was a very sad day for us. The occupational therapist who has been working with Peter since his diagnosis two years ago is leaving. She was able to get a job as a therapist closer to home (she lives an hour away from here) and announced last month that she was leaving. Today was her last day with Peter.

I don't think Peter realizes what has happened but I know he will miss her. From his behavior, I think-- no kidding-- that he's half in love with her. For example, Children's Hospital opened a brand new therapy center last year and moved less than a quarter mile from our home. But driving past their old location this past summer, Peter called out from the back seat, "Go see Allison?" And I tried to explain that she wasn't there, that she was near our house now but he got upset that he couldn't go and see Allison. He hasn't done that with any other therapist or teacher, just Allison.

Therapists are worth their weight in gold-- Peter's OT certainly was. Not much surprised Allison and she had the most amazing suggestions and tricks to calm him down or interest him in activities. We will miss this woman who taught us so much and treated Peter and his autism as if it were the most normal thing in the world.

Potty Training

2008-01-27T18:19:00.000-05:00

Uh, yeah. Well, suffice it to say that potty-training under the best of circumstances is a bear. Add two trying to train at the same time plus the added complication of autism and you have the basis for a new reality show.

Let's put it this way, I am so glad we've replaced most of the carpet in our house with laminate flooring. Clean-up is a breeze.

Peter will be five in a month and this is probably the third time we've attempted potty-training. He seems to take an interest in it and then regresses.

Nathan on the other hand is taking to it like a duck to water. His developmental delays have gotten in the way some so he is still struggling to tell me he has to use the restroom. Like most kids, he also forgets about toilet training when he's really involved in something. But slow progress is still progress.

Oh, and M & Ms make great incentives.

Converging Worlds

2008-01-16T14:07:00.000-05:00

I just posted this on my political blog. And although I generally try not to mix the content or purpose of the two blogs, today I feel I must:

I just received an e-mail from someone at Britannica Blog who thought I would be interested in a recent post on autism and presidential politics. She was right. I have to say that although my focus on this [my political] blog is more traditional right to life issues, there is a convergence for me on autism, the right to life and the elections.

Let me explain--

Autism is not a condition that can be screened for before birth. That said, I have seen some pretty obnoxious comments on the internet. Things along the lines of "if these people know their kid is going to have a disability, why don't they have an abortion?" My concern is that most insurance companies in a vast majority of states (last I checked, 42 of them) do NOT cover therapy for children with autism. Our insurance company does but that's because the employer is based in Washington, D.C. and purchases its insurance package from the state of Maryland-- which is one of eight states that DOES require insurance companies to cover services for autism.

The monthly total for our sons' two hours/each a week private therapy is approximately $4400. No, that's not a typo.

Currently, research is focusing on genetic causes for autism and my fear is that the day will come when we will be able to screen for autism just like Down syndrome. And just like Down syndrome, approximately 90 percent of those babies testing positive will be aborted.

The very fact that parents can go bankrupt paying for services their insurance companies do not cover could encourage parents to turn to abortion.

This is very much a right to life issue. Thus far, autism has played a minor role in the presidential race and certainly abortion, as the larger issue, has played a much more significant role.

But with 1 out of every 150 children being diagnosed with autism, the impact of this issue in the next presidency, and on the pro-life cause, cannot be understated.

A Date for the Cranio-Facial Clinic

2008-01-14T15:30:00.000-05:00

Well, at this point we know we will attending the cranio-facial clinic on March 17th. On that day, we will meet with 12 or 13 doctors who will go over Peter's records and CT scans. This group of doctors will include his neurosurgeon, plastic surgeon, a cranio-facial surgeon, etc. Part of the point of the clinic is to determine whether surgery is needed. Cranial synostosis is most often found in infants-- if it's not too bad, doctors sometimes wait and follow-up with x-rays and such to determine if the condition is worse or if it is causing problems. In Peter's case, we've pretty much have already been told that we are headed for surgery. The clinic for us will be an opportunity to hear what doctors recommend for the surgery-- in other words how extensive-- and for us to ask questions.

We were told that the closer we got to the clinic date, the neurosurgeon's office would have surgery dates to discuss. So we are still in a state of "hurry up and wait."

First day of school for the new year

2008-01-02T11:45:00.000-05:00

I was never so happy!

Okay, I do miss the kids. BUT Gabrielle was doing "projects" that apparently required distributing construction paper throughout the first floor of the house. Peter commandeered the computer so I couldn't get on it without a bit of a fight. And Nathan-- well, Nathan ran the extremes between being clingy and independent.

He did do something exciting yesterday, he said "Mom, watch me, look" clear as day. I was so proud of him.

On another note: We are waiting to hear from the neurosurgeon's office regarding the cranial-facial clinic. We'll be getting a call telling us when that will be in February and that's the next step.

As my husband said, Peter has been an adventure almost from day one. (Peter's day one-- in utero).

Headed for Surgery (No Pun Intended)

2007-12-19T10:17:00.000-05:00

We heard from the neurosurgeon's office on Monday. Peter has cranial synostosis and we will need to attend the cranial-facial clinic in February. The CT scan results have been sent to one of the cranial-facial surgeons at MCV for his review and staff at MCV will be working on a list of proposed surgery dates.

At this point, unless Peter starts exhibiting some of the more severe symptoms of synostosis (seizures and so forth from intra-cranial pressure) he will have the surgery sometime in February or March (he turns five in March-- what a way to spend a birthday.)

I'm okay, I just think it stinks and I hate the idea of putting him through all of this but he has to have the surgery. Otherwise, the condition eventually becomes life threatening.

I'll keep posting as things progress.

Peter's 3D CT Scan

2007-12-13T12:46:00.000-05:00

This is the top of Peter's skull from the CT Scan. As you can see there is no suture down the middle of his skull. The suture you see running from left to right is the coronal suture that runs from right in front of one ear to the other. The sagittal should run from the middle of that suture to the back of the skull but it's not present. If it were, it would have the same zig-zagged appearance as the coronal suture.

This is a side/rear view of Peter's skull. As you can see, about where the ear is there should be a suture but, again, there isn't one.

The 3D CT Scan

2007-12-13T11:28:00.000-05:00

Well, I've seen the CT scan. The doctor has received the radiologist's report by now but he has not seen the scans (he picks them up tomorrow when he comes to Fredericksburg).

Peter has absolutely no sagittal suture. His skull looks like a shiny, smooth, round cue ball. He has the coronal suture and the lambdoid (the one on the lower back of the skull) but that's it. I can find little evidence of the temporal sutures as well. On one side, you can kind of see where it was but the other side looks as if the suture was never there. Peter also, very, very clearly, has trigonenephaly. You can't quite tell looking at him but his forehead is small and triangular shaped and his skull is strangely out of proportion with his face. Looking at him with his skin covering the skull, you can't tell this but the scans tell a completely different story.

The question for us now is whether the neurosurgeon will want an ICP test done and, if so, when. We expect that we will be meeting with the surgical team in February as the neurosurgeon suggested. I wonder now just how extensive this surgery will have to be and will Peter need additional surgeries to follow-up later.

I'm also wondering if this could be related to a chromosomal abnormality. Most multiple suture synostosis cases are related to a chromosomal syndrome but Peter doesn't display any of the other conditions related to these syndromes.

After our next meeting with the neurosurgeon, I will likely e-mail Dr. Bodurtha who is the head of genetics at MCV. She tested the boys a year ago this past summer and wanted to see them again this summer for more testing. She may have insight into what could be going on.

I'm worried that this may represent a larger, more serious issue.

I apologize that this post is a bit depressing. I try to be more upbeat but this has me worried (and rightly so) but I promise I'll try to write of some of the funny things the boys have been doing.

Cranial-synostosis (or Cranial-stenosis)

2007-12-08T14:25:00.000-05:00

Peter saw the neurosurgeon at the Medical College of Virginia on Tuesday (December 4). He confirmed that Peter has synostosis (or stenosis, depending on what source you consult). Synostosis is a medical term that means 'fused.' Some of the bone plates in Peter's skull have fused early. This can cause problems with his brain growing.

The sutures or gaps between the plates are connected with fibrous tissue that is supposed to fill in over time but in children it's supposed to remain flexible so that the skull can grow as the brain grows.

Peter has had synostosis of the metopic suture (the one that runs down the middle of the forehead) for quite some time. The doctor said this suture normally closes around 1 year of age or so and the fact the Peter has trigonencephaly (pyramid shaped forehead and probably forebrain) indicates that this sealed much earlier (this may have been why I had a devil of a time delivering him if his skull was partly fused).

The bigger concern at this time is that it seems the sagittal suture (the one that runs down the middle-top of the skull connecting the parietal plates on either side) is likely fused now as well. We go for a 3D CT scan this Monday, (December 10th) to get more information. The neurosurgeon will look over the scans and depending on how bad he thinks it is, he may order a ICP test. This test looks for intracranial pressure (ICP) that may be affecting the brain. In essence, the neurosurgeon would drill a hole in Peter's skull, place a probe in and monitor the pressure inside for 3 days. Peter, of course, would be hospitalized this whole time.

If the neurosurgeon feels that surgery is needed (which is looking likely), we would meet with a panel of doctors in February who would sit down with us and go over the case and make recommendations. The panel would include the neurosurgeon (or two), a pediatric neurologist, speech therapist, a cranio-facial specialist, plastic surgeon, etc.

The neurosurgeon said that at this point fixing the metopic suture would be more cosmetic that anything else (basically 'what's done is done') but I wonder if it isn't the cause for Peter having a more severe case of autism. (Nathan doesn't have any of this). The forebrain is affected by the trigonencephaly and it's where a lot of higher reasoning takes place. Also, in synostosis cases there can also be mild hydrocephaly so this is a concern as well.

We will know more Monday and then after that, we will try to enjoy our holiday as much as possible while worrying about serious and life-altering surgery for our son.

Argh!

Updates and News on Several Items of Interest

2007-11-28T11:02:00.001-05:00

First, Nathan is talking. Finally-- really talking. I mean, I knew at some point, he would (I assumed by the time he was ready to enter college) but to have him actually communicate using his voice is fantastic. He still sounds like he is deaf-- his tone is flat and it's very difficult to understand him but he's using short sentences and naming objects left and right. I can get most of what he says and figure out the rest and this has been a tremendous change for the better right now.

Second, Peter was having difficulty sleeping again. We had put him back in the crib because he was getting out of the toddler bed repeatedly. But the crib is only meant to hold a child weighing 35 lbs or less. Peter is 45 lbs. He also wanted a "tent" over the crib. So, we had to put a coverlet over the crib to make a "tent."

Instead, we got a mattress (no box spring, at this point) and I was looking for a bed tent you can get on the internet. My sister came through instead. She had bought one for my nephew over the summer and didn't put up-- she said I could have it when she heard I was looking for one.

We put the bed tent on the mattress and put the mattress on the floor in the corner of Peter's room. He loves it. I can't say that enough-- he absolutely adores the bed tent. We have had few problems with getting him to sleep. We still have to put two gates up to keep him from climbing out of the room but instead of crying and trying to climb the gates anyway, he's crawling into the bed tent, playing for a little while and then drifting off to sleep. Hallelujah!!

Fortunately, the tent is big, it covers an entire twin mattress and should last him for quite some time. He doesn't pull on it or try to knock it over and he's managed not to get anything on the tent. Granted, Peter likes things neat so he's not one to draw on the walls or paint his floor with bath soap.

Third, Peter is scheduled to see a neurologist at the Medical College of Virginia in Richmond next week. We believe he may have what is called cranial synostosis. This is just a fancy way of saying that a couple of the bone plates of his skull may have fused together early. As young as he is, the spaces between these plates are supposed to be open to allow the brain to grow until it reaches it's full adult size. There are five plates that form the skull and the joints between these plates are called sutures. X-Rays done by his pediatrician showed no sign of the sagittal suture which is the one that runs down the middle the skull. It joins together the parietal plates which form the major portion of each side of the skull. You can also feel that Peter has a ridge running down the middle of his skull which can also be an indication of synostosis.

If synostosis is indeed what has happened, he will need surgery to separate the plates so his brain can continue to grow without hindrance. It's a matter-of-fact way of saying all of this but rest assured, like any mom, I'm scared to death my child may have to have some very serious surgery that will expose the membranes covering his brain and require him to be in the pediatric ICU for almost a week.

I'm sorry this post is ending on less than a happy note but sometimes things just stink and you have to let them. They make us appreciate the beautiful things of life all the more.

Peter: Nature Calls

2007-10-28T16:43:00.000-04:00

Well, today was momentous-- not necessarily in a good way.

Peter has had issues with clothing for some time now but he at least kept his undies or Pull-Ups on while at home. Not today. Today, he is as naked as the day he was born. I keep counting my blessings (for example, he's only 4 and not 16) and figure at some point he has to put his clothes on again.

Thank goodness Nathan hasn't decided to follow his brother.

Both boys have been sick all week and, of course, they just have to share-- I think I'm coming down with the virus they have had.

Well, at least if they're feeling better, they'll be at school this week and I can be miserable in peace-- for a few hours at least.

Cooking with Mommy

2007-10-16T10:17:00.000-04:00

I should start a cooking show-- I mean, really, everyone else has one. Why not a show on special needs kids cooking with their moms. Or maybe I should put together a cookbook using recipes from special needs kids and their moms. The donations could go to autism research groups. I don't know, I'm just thinking outloud (or in print) because I've noticed that Peter and Nathan like to help cook and Peter, especially, has gotten very good at helping.

When we make pancakes for breakfast, Peter's my designated helper and he "dumps" the flour, sugar, and etc. in the bowls. He then whisks the contents of the bowls and then dumps the dry stuff in with the wet. Which he then whisks together. The nice thing is that, largely due to his autism I'm sure, he's very precise about following directions. So for a four-year-old, he's very neat and a great helper.

"Destructo" is Peter's Alias

2007-09-13T17:20:00.001-04:00

I fear that Peter has a villainous alter-ego known as "Destructo"-- at least that's how it feels at times. In the last two weeks alone he shattered my cheval mirror (talk about 7 years bad luck. . .), a drinking glass and pulled a wall cabinet off the wall of the bathroom-- in the process breaking two ginger jars and an elaborate tealight holder that was a gift from my sister-in-law.

It's not as if I wasn't around when these thing happen-- they just happen so quickly you can't stop them.

And each time something like this happens, I become a little more jaded about whether we will ever have a nice looking house. On the plus side, our house is already a fixer-upper and while we've completed most of the exterior work and many interior problems, most of the cosmetic issues are still outstanding. This is probably a good thing. Since I tore a small hole in the wall looking for a junction box for the phone line (only to discover that the builders put a metal electrical box on the wall stud but nothing else) and haven't patched it yet and my kitchen ceiling has leaked countless times because of the flooded bathroom, I am no longer concerned about whether anything looks nice-- at least not today. I might be tomorrow or next week but definitely not today.

Ah, School. . . :)

2007-08-29T11:07:00.000-04:00

Okay, I feel bad. I was so excited when school started this week. Part of it is just so I can relax without having to have my radar up for noises that indicate destructive behavior in one of my children.

I don't have to keep my radar tuned to a door opening or the bathroom flooding. It's great!

I miss my kids!

I know this is good for all of us but I think I am suffering from a little withdrawal. Of course, it doesn't help that Peter was crying when I dropped him off this morning. (He had to wear of shirt and he's in a I-hate-shirts stage with his sensitivity issues.) Both boys are in school three days a week so I'm hoping to use the time to complete writing projects I want to do and have promised to do.

And I'm hoping that if Peter has to wear a shirt everyday, he'll be back in them in time for cold weather.

Nathan barely glanced back at me when I dropped him off. His teacher said he did well yesterday but he didn't want to do anything they asked him to do (typical Nathan). He's in a whole-language class meaning that the teacher uses gramatically correct sign language for just about everything she says. He'll probably come home using signs I've never seen before.

Peter's "Sleepover"

2007-08-03T11:59:00.000-04:00

Sleep is a big issue for children (and parents) dealing with autism. Peter seems to have problems in this area more so than Nathan (although Nathan does too-- it's just not as bad).

Last night, Peter wouldn't go to sleep. He refused to take a nap earlier in the day so I knew he was exhausted. Daddy went up twice to get him to go back to sleep and the third time out of the bed, I went up. I asked Peter what was wrong and, clear as day, he said "I want to sleep with Gabrielle." So I moved him into Gabrielle's room and let him get in bed with her but because it was different (and, of course, a majority of children with autism seem to have problems with change in routine) he again was having a hard time falling to sleep. And, of course, Gabrielle wanted him to stay because she hates the idea of sleeping by herself. We were quickly approaching midnight at this point and I was getting frustrated that he didn't want to leave Gabrielle but he wouldn't stay in bed with her either.

So Plan C was to move the mattress from the toddler bed into Gabrielle's room and put it on the floor next to her bed and put Peter, his pillow, big Mickey Mouse and one of his stuffed dogs in it. I laid down with Peter for maybe ten minutes and both he and Gabrielle were sound asleep when I sneaked out.

I'm a little nervous that he's going to want this arrangement again tonight. I don't know how this is going to work if he continues to want this up through school.

And We Regress

2007-07-30T17:38:00.000-04:00

Peter seems to have lost some of his interest in potty-training. I went out and got him big boy underwear so I'm hopeful that this will give him the added oomf he needs to get excited about it again.

Peter is also getting angry frequently again and I'm not sure what this means. I'm hoping it means that he's on the verge of a communications breakthrough. That's what it meant last time. But for now we wait and see.

Nathan is talking-- well kind of. He's saying many more things and using more signs to communicate with us. This is making life easier for everyone.

My Apologies

2007-07-19T16:35:00.000-04:00

I apologize for not posting in the last couple of weeks. We were briefly out of town but upon our return had to deal with a few bouts of illness. I was sick for about a week and then Gabrielle apparently caught what I had but had an allergic reaction to something on top of the stomach bug. She broke out in a severe case of hives (which she has never done) and unfortunately was not on her maintenance medication because we accidentally left it when we had returned home from our trip.

The hives were so bad, we had to take her to an emergency care center since it was a Saturday and her pediatrician's office was closed (we almost took her to the hospital but I was afraid it would take too long there) and they treated her pretty quickly with steroids. She was on steroids for a week and a half and just came off of them.

And I replaced her allergy medication as soon as we left the doctor's office.

All around, a pretty exciting July so far and if it slows down I'll be grateful.

Smashmallers

2007-06-30T11:40:00.000-04:00

Peter requested "smashmallers" today. He meant marshmallows and I was so happy he had messed the word up. I know it sounds strange but when a four-year old makes up a word to describe something he's heard before it's so. . .normal(!)

It's just another sign that his brain is out of mimic mode and is processing information in a more normal fashion. "Smashmallers" is just another reason to give me hope.

Oh, Boy What a Week!

2007-06-27T11:58:00.001-04:00

It seems that just when I think it's safe to relax, that's when I discover that relaxing can't be in my vocabulary for at least another 10 years--if that.

Peter, flooded the downstairs bathroom. This time it was legitimately not his fault-- at least I don't think.

Last week, just before we were to pull out of the driveway to visit my in-laws (a four/five hour trek on a good day), Peter slapped at the television screen for the car DVD player and snapped it right off. I still don't know how much that is going to cost me. The dealer rep who handles this hasn't called me back yet.

Peter fell down the stairs while we were at my in-laws but aside from a rug burn on his shoulder he was okay.

On the plus side, my nephew had a stuffed Mickey Mouse that he toted around when he was little and, now that he is eleven, he bequeathed it to Peter who promptly fell in love. So this much loved on Mickey is now Peter's sleeping buddy along with a smaller Mickey and four or five copies of the Alaskan sled dog. His bed has gotten a little crowded.

Nathan Talking (!)

2007-06-15T19:52:00.001-04:00

Nathan is beginning to make intelligible sounds that come close to approximating the words he is trying to use. Between yesterday and today, Nathan has said the words: blue, red, car, house, cup and paint. I could actually tell that these were words he was trying to say. We're making progress!

Summer Activities

2007-06-13T11:06:00.000-04:00

Since both boys have been in school all year, it's easier to get them to participate in craft projects and activities with their big sister. She always wants to do projects but, in the past, this was problematic because the boys wouldn't use the glue correctly (What am I saying? Peter used it properly the other day but then finished by trying to shampoo his hair with it. He got a haircut.) or they would throw feathers, glitter or sequins all over the floor.

This year has been better. They've painted and glued objects onto paper. Next we're going to try popsicle stick projects or something like them.

We'll see how it goes but I would like for kids to do more than play outside or watch television. We've planned picnics for days when Daddy is home (and it's not raining) and we're hoping to do a few field trips to museums.

I would love for someone to put together travel books for parents of children with special needs. Maybe that's my next project.

Friday was Stinky but Today was Okay

2007-06-11T22:15:00.000-04:00

For the first time, Peter's speech therapist heard him use a full sentence with the first person pronoun. ("I want to play with the ball more.") He's done that at home but I would say only 5 percent of the time. The rest of the time he uses questions to prompt the listener into doing what he wants which he then answers. As in:

Peter: Do you need more help?

Peter: Okay.

Mommy: Peter, do you need help?

Peter: Okay.

Mommy: Peter, can you say, "I need help, please"?

Peter: Yes, please, I need help.

As I've mentioned before, Peter tends to incorporate new behaviors a little more each day until he's doing something almost 100 percent. I hope in a year we'll be able to look back and see that the third person questions are a thing of the past.

Sometimes It Ain't Pretty

2007-06-08T16:20:00.000-04:00

As I'm sure you've noticed, I try to remain very positive in these posts but sometimes it helps just to say that autism stinks.

It stinks when people stare, it stinks that you have to ask your child 14 times what they want to eat before you might get an answer (and that's for those of us lucky enough to have children who speak), it stinks when you have to clean up poop from the steps where the one potty-training decided to wipe his rear when you didn't change his Pull-ups fast enough (of course, again, that's for those of us lucky to have one who is actually potty-training.) Autism is not a "mental illness," as I've heard it described recently, it is a condition that affects the communications system in the brain, and yes, that stinks too. "Mental illness" always sounds like something most patients can recover from or take medication for-- no such luck with autism.

It stinks that we won't know how our kids will do as adults in this big bad world until we're there. Until then, every morning, I will wake up and pray that the autism doesn't stink as much today as it did yesterday and that I get a little piece of hope thrown my way to encourage me.

Eggs, eggs and more eggs

2007-06-05T11:26:00.000-04:00

I don't know why but Peter and Nathan are fascinated with eggs. Peter maybe more so but only because he is more capable of getting into the refrigerator to take the carton out. He got one, oops-- make that two, out this morning and dropped them on the floor.

Part of this may be my fault. To encourage social interaction and Peter's genuine curiosity, he's been helping me cook. He's actually pretty good for his age. I measure things out and he dumps. Now, of course, this means that he assumes he can help me every time I'm in the kitchen which isn't always desirable (try frying chicken with a little helper-- it's very stressful trying to explain, every two minutes, why he can't stand on a stool in front of the frying pan). Today, we made brownies even though I'm on deadline for three opinion pieces-- oh, well, I'll get them done somehow.

A Visit to the Office

2007-06-01T23:38:00.000-04:00

After I picked the kids up from their last day of school today, I took them to my old office to see everyone. I've hesitated to take them because of the boys issues with paying attention, etc.

They were really good though. I was very proud of them. They were busy little beavers as usual. It's almost impossible to expect otherwise but they said hi to everyone and Peter did not display his characteristic shyness. He actually said "please" and "thank you" to people he likely did not remember. Normally, I have a hard time getting him to speak at all in front of "strangers" but he did speak and did well.

Nathan was more hesitant although this didn't prevent him from swiping toy cars off of someone's desk and walking around with them the whole time. He was a little fearful but he too was fine.

The End of School

2007-05-31T09:58:00.000-04:00

The end of the school year is always bittersweet. Teachers give so much of themselves over the year in an effort to teach our children.

Nathan's teacher was crying already when I dropped him off this morning and when I asked why (since it was the beginning of class and not the end) she said she realized that it was last time she would help this particular set of children off their buses. The two-year-olds move up and stay in the preschool 3 and 4 year-old class for at least two years but Nathan's teachers get them for only a year before they move on.

I'm a little emotional myself. I realize that this is the last time Nathan will be in this particular class and his teachers have done so much for him. He has mastered a number of areas that were considered seriously deficient only last summer.

To each teacher who sacrifices your time and energy to help our children, thank you. I don't know if you realize how much we appreciate what you do. Our gifts of thanks at the end of the year really don't say enough.

I believe it was Abraham Lincoln who said, "I am a part of all whom I have met." Each teacher leaves a mark on every child. You have helped to challenge them and to open up a door to a world that before now they didn't have the keys to. So it is heartfelt when I say thank you.

Memorial Day

2007-05-28T11:58:00.000-04:00

I want to say thank you to everyone who has served in our armed forces. Without you, we would not be the free nation that we are today.

Thank you. My sincerest thanks and appreciation for your sacrifices-- both great and small-- so we can live in freedom.

A Day Like No Other

2007-05-25T10:59:00.001-04:00

Yesterday had to rank in my top ten "worse personal days" of all time.

Nathan's diaper was dirty when I picked him up at school. His teachers change diapers right before it's time to leave but I was running a couple of minutes late. (I had picked up juice boxes for his class picnic next week.) And the interim between when they changed him and before I picked him up was apparently just enough time for him to dirty the clean diaper. This would have normally been okay but Peter was "helping" on Wednesday and took my spare diapers out of the car and carried them in the house.

I put Nathan in his seat but he fought me because he wanted to "drive." He slumped out of his seat and that was when I discovered that he was not a little dirty but a whole lot of dirty and it was on his carseat and carseat buckle. I had no diapers and only a clean shirt for him so I stuck him in his sister's booster seat (her's is easier to clean) and drove him home. Once home, it took an hour to clean him and the car up.

Later, Peter, Nathan and Gabrielle each made very specific, very big messes. Gabrielle left milk out and Peter poured it on the floor. This of course happened while I was cleaning two of Nathan's messes. Gabrielle left her dinner plate out and Nathan had carried it off and had gotten syrup all over the couch (Peter wanted pancakes last night so. . .we had pancakes) then Nathan wanted everything out of the toy box. While I was cleaning the couch, Nathan was pulling all of the toys out of the toy box-- he would look at them for a moment and then throw them on the floor.

Gabrielle, meanwhile, was playing with friends in the front yard and they all decided that it would be neat to open my papers (I get two) and spread them on the lawn or something. I opened the door to give her a ten minute warning to come inside and to ask her to bring me my newspapers and instead discovered the papers in a very messy pile on the front porch. I asked Gabrielle to bring them inside and she did. She piled them up on top of the toys Nathan had thrown on the floor right inside the front door. Oh, and she was wet from head to toe because one of the little boys she was playing with dumped a watering can on her head.

And daddy came home and walked through the back door.

LOL

Peter's Little Sentences

2007-05-23T16:32:00.000-04:00

Peter has been working very hard to speak in complete sentences. We are constantly reminding him to say "I want. . ." instead of him just walking up to us and saying "Band Aid" or "milk." And he's getting it, slowly but surely over the last couple of weeks he has been saying, "I want milk, please" or "I want chips, please" all on his own.

This is a tremendous accomplishment for him and we are encouraged at how quickly he incorporates new behaviors.

It's the Little Things

2007-05-22T12:16:00.000-04:00

I thank God daily for the little things we have been blessed with. Yes, both boys are on the autism spectrum but things could be so much worse. I feel blessed that both of them have rudimentary communication skills, that they show no regression and that we are seeing progress. As I've mentioned before, a positive attitude is everything. No matter how many times Peter floods the bathroom or Nathan's slight obsession over drawing has resulted in Sharpies on the sofa, ink on the walls and crayon on the cabinets and floor, I still thank God for the things they can do.

A friend of mine has a daughter who has Down syndrome, she also has moya-moya syndrome which caused a series of strokes when she was a toddler and has left her paraplegic. She has also been in regression for a year after ending chemotherapy for a leukemia diagnosis three years ago. Her mother has a marvelous positive attitude and thanks God for the good things. She has been an inspiration to me.

I have no complaints and I think the attititude I display toward the boys-- one of patience and the expectation that tomorrow they will be capable of doing more than they can today-- makes a real difference in how they do.

My Daughter

2007-05-18T16:05:00.000-04:00

I don't often write about my daughter because she is neuro-typical (or so we think). The doctor who diagnosed our sons suggested that Gabrielle might have mild Asperger's and I'm inclined to believe she may be onto something even though she didn't examine Gabrielle. The doctor made her comment based on discussions of our family history and Gabrielle's behavior both as a toddler and child.

Gabrielle is excruciatingly disorganized. I tease her that she couldn't find a bright yellow sock in a pile of black ones. She can't remember where she puts things to save her life. She's absolutely terrified of tornados and obsessive over storm clouds for the same reason. And she's unbelievably brilliant-- I think she may one day become a lawyer.

Case in point.

Last night, she began a discussion on coins, noting that Thomas Jefferson's profile graced the front of the nickel. Her father asked if she knew what the building was on the back of the nickel. She didn't, so he explained it was Monticello and that he had been to Jefferson's home before.

Gabrielle stared at him a moment, assessing his truthfulness (he's forever teasing her), and she finally said, "I don't suppose you have proof of that, do you?"

Despite the fact that our family life is not typical, Gabrielle is doing a wonderful job as a big sister and could one day become an advocate for children with disabilities or maybe even a physician. I don't know what the future holds for her but she is extremely tenderhearted and smart. She'll be able to do whatever she sets her mind to.

I Apologize

2007-05-18T00:47:00.000-04:00

Our computer has been slowing down considerably over the last few weeks and it was only today that I figured out what the problem was. It's still not 100% but it is much, much better and it doesn't take three hours of repeated rebooting just to read my e-mail.

I'll post something later today but I wanted to apologize for the inconsistency in my posts this week.

Ah, the Flood. . .

2007-05-16T17:00:00.000-04:00

Well, it happened again. I was rushed for a deadline for some writing projects but I took a break to take my daughter to Tae Kwon Do. My husband had gotten home from work early but had risen early for his job (2:30 a.m.) yesterday so he was tired. Peter had a dirty diaper and I couldn't get him out the door fast enough so my husband said he would watch him. I dropped Gabrielle off and took Nathan to get gasoline for the car (just down the street) and came back to get Peter. I opened the back door and walked past the kitchen just in time to see water cascade down the soffit and into the sink. Peter had managed to flood the bathroom again, less than fifteen minutes after I had left.

When Tae Kwon Do was over, the writing project was placed on hold and I installed the lock intended for the bathroom door.

Peter will not flood that bathroom again. (I hope.)

Small Steps

2007-05-15T01:11:00.000-04:00

My husband and I get discouraged sometimes at the thought that the boys will likely always have problems-- Peter more so than Nathan. Nathan's condition isn't as obvious at first and I think as he gets older, he will calm down considerably with his stimming and do much better socially than his big brother.

Peter's future is much harder to guess at. We try not to think about what things will be like too far down the road because it's pointless. We can prepare but we can't predict. So we do our best and pray (a lot) and cheer Peter and Nathan on when they accomplish both big and little things.

Small steps lead to great strides, so we wait and watch and take pleasure in what we have.

Mother's Day

2007-05-11T17:40:00.000-04:00

My husband and I were told that it would be very difficult for us to have children. Mother's Day would always tear me up because it was just a reminder of our infertility and how much it hurt not to be a mother.

Today, in spite of my sons' conditions, I couldn't be happier. What seemed to be missing, my children, are here and that's all that matters.

I'm asked all the time if raising children with autism is difficult. The answer is yes, it's very difficult. But the rewards are priceless--when one of them potty-trains or says "I love mama," these are far more significant achievements than those of neuro-typical children and I have had the honor to witness these hard-won victories.

Becoming a parent teaches you just how selfish you are. Becoming the parent of a child with special needs teaches you just how unselfish you are willing to be.

To all moms, moms-to-be, grandmothers, loving aunts and the teachers of our wonderful children: Happy Mother's Day!

Peter's At It Again

2007-05-10T13:25:00.000-04:00

What is up with the water obsession?! Everytime I think I've manage to control this, Peter and/or Nathan find a way around whatever I've used to block or impede their access to water.

Peter (who is, of course, more mobile than Nathan so more likely to cause problems with water) found a way to get over my gate/laundry basket blockade and flood the bathroom while I was doing some laundry. (BTW, anyone who tells you that autistic children are somehow mentally inferior to neuro-typical children is an idiot who is blissfully ignorant of the truth. Let him or her try living with an autistic child for a week and they will quickly discover how smart and resourceful they are.)

Since this is the second full flooding and probably the fourth or fifth time he has come close to it, I will have to replace the sink cabinet. It is showing signs of damage, especially around the bottom. So that's going to be around $200/$250 from start to finish.

On a bright note, however, I bought locks to install on the outside of the bathroom doors to prevent Peter from gaining access without help. Now we'll see how long it takes for him to figure out a way around commercial locks :)

Shopping and Toddlers

2007-05-09T11:02:00.000-04:00

Shopping with toddlers is a combination that can strike fear in any mother but combine that with autism and you've got the makings for a possible county-wide crisis.

One wants to go one way and the other wants to go another way. And running and hiding from Mommy is funny (Who knew? I certainly didn't know that this was supposed to be funny.) The one thing I went in for turned into five as we picked out a toy for each and a pack of bandages to feed the latest obsession that one of them has for Band-Aids.

I try not to take both boys by myself if I can help it. It's just way too stressful. One of them is okay but both is a fearful force. Take the normal toddler behavioral issues, cube them and this is what it is like to deal with autistic toddlers.

We did manage to leave the store with a toy motorcycle (Nathan), a small electronic abc/shapes toy (Peter), bandages (Peter), diapers (both) and a box of tissue (the car). But Nathan had to be put in the cart to keep from running off (about which he wailed) and, at the end, Peter had to be hoisted over my shoulder in order for us to leave.

C'est la vie.

Nathan's Little Smile

2007-05-08T14:16:00.000-04:00

I confess that the Mona Lisa smile does not fascinate me the way it seems to have fascinated others for several centuries.

But I am willing to revise my opinion.

Nathan as of late has been giving me a similar smile when I praise him for something he has done. Since he doesn't really speak, it makes his smile all the more mysterious since I can't figure out what he means by it.

It's a slight uptilt at the corners of his mouth, almost like he knows more than he lets own. The smile makes me laugh because it is so adult-like-- it's so knowing.

I'm looking forward to when he can communicate with me better. I want to ask him what he is thinking when he smiles like that but, by the time he is able to tell, he may not remember. Like the Mona Lisa, the smile may forever remain a mystery.

"I love tickling!"

2007-05-07T09:50:00.000-04:00

This morning, while waiting for my husband to come home after dropping our daughter off at school, I was horsing around with Peter.

My parents bought the boys a little toy that, when a button is pushed, multi-colored lights spin around on the inside of a clear ball. When the button is pushed the little toy vibrates a little as well. I was using the silly thing to tickle Peter. I kept putting it against his neck and he would say "tickle, tickle" and then laugh.

After about a minute, he giggled and then said, "I love tickling, I love tickling, I love tickling!"

We've been trying to get him to use complete sentences and for him to spontaneously say this without prompting has made my week!

Shoes

2007-05-04T12:36:00.000-04:00

Peter apparently hates shoes. The first chance he gets, he takes them off. I think it's because he is sensation seeking and feels so much through his feet.

We have issues with this constantly. For Nathan this isn't a problem. He likes wearing shoes but because he took so long to walk (he was 26 month's old when he started walking), he went a long while without them and I think that he thinks they make him look like a big boy.

Peter, however, echews shoes (LOL) every chance he gets. His teachers (with whom he has been since late last year) have experienced the "shoes-off" phenomenom but Peter surprised them a little by insisting on taking his socks off. My first thought was that he was REALLY comfortable with his teachers now :)

A New Gate Works Wonders

2007-05-03T15:09:00.000-04:00

My husband went out last night and bought a new gate for Peter's room and as I readied the kids for bed, he tried to figure out the best way to use it.

Now, in the interest of full disclosure, my husband is the modern American male and grew up watching too much television. He's often all thumbs when it comes to home improvement. He can, however, beat just about anyone, on almost any topic, when it comes to pop culture trivia.

So as he struggled to figure the contraption out, I had to come to his aid. I grew up with a father who insisted that we know how to change a tire, check the oil, swing a hammer and know a Phillip's screwdriver from a common.

After adjusting the gate, we discovered to our delight that it fit much tighter than the old one and Peter was at a loss as to how to scale it since it was also a few inches taller.

Yippee! For the first night in about a week, we seem to have won the battle.

However, the war wages on. Peter will get taller and in a few short months we'll have to figure out a new way of keeping him in bed.

Ouch!

2007-05-02T17:42:00.000-04:00

Having autism does not mean that my sons aren't smart. Having autism doesn't mean my sons can't be sneaky.

Case in point.

Peter and Nathan, like most kids with autism, are fascinated with water. To put it another way, between discovering we had a leaky toilet and the boys' obsession with water, my water bill over the last couple of months has been $200. Normally it's around $25.

Let's just say I'm thinking about chaining the bathroom doors shut-- from the outside.

This morning, Peter snuck upstairs to the scene of last week's crime (remember the overflowing sink and my leaking kitchen ceiling?) and began running water. I sensed rather than heard what was going on and ran upstairs to see what mess he was making. As I walked into the hall from the stairwell, Peter rushed at me, squealing, and began pushing me away from the bathroom (where the water in the sink was running). As I pushed past him, I hit the wall or something with my foot and I am now wondering if my second toe is broken. It has slowly been turning purple and swelling. Now the perky pale pink polish on the nail looks like it lacks respect for the rest of toe.

I did, however, manage to avert yet another catastrophe involving water. I limped to the bathroom in time to turn the water off before it cascaded down the front of the sink cabinet. I closed the door and blocked it with a very large and full laundry basket (never thought I would appreciate laundry day quite so much).

Peter was mad at me but as I told him-- c'est la vie.

Hug Them and Don't Let Go

2007-05-02T15:45:00.000-04:00

A story today on Breitbart tells the tragedy of a one-year-old little boy who died yesterday when his father left him in the car instead of taking him to day care. Timothy Reid's father found his son seven hours later when he returned to his car with the intention of picking up his other children from school.

Timothy was pronounced dead at the scene and the internal temperature of the car was 142 degrees.

I cried and cried. I feel for his father but I have a terribly vivid imagination sometimes and I cried knowing that Timothy must have been scared at being left alone for so long. He likely fell asleep as the temperature rose and became unconscious before dying but somehow my imagination gets stuck with the first part.

It makes me want to hug my children all the harder and be grateful all the more for them.

Oh, Happy Day!

2007-05-01T14:11:00.000-04:00

I pick Peter up from school at 12:50 p.m. and he goes three days a week. Nathan goes only two times a week for two hours a day so I had already picked him up by 11:00 a.m. this morning. I put in one of their "Signing Time" videos in the car's DVD player (fantastic video series, BTW) while driving to pick up Peter. At the end of this particular video, the host, Rachel, goes over the alphabet in sign language. Nathan, yes-- my virtually non-verbal youngest, said and signed all the up through the letter G.

I was so excited I actually started to cry. But driving and crying don't mix very well so I had to content myself with squealing, laughing and telling Nathan how proud I was of him.

Speech

2007-05-01T10:13:00.000-04:00

Peter finally went to sleep last night a little after midnight. Of course, when my husband went up for the umpteenth time to keep him from climbing the gate, I ran up to grab pajamas out of our room (if Peter sees me, he gets upset, wants Mommy and then we start the whole going-to-bed process all over again.) As I round the corner, I hear Peter say "paci" which is our shorthand way of saying pacifier. He must have lost his and he's not able to sleep if he doesn't have it.

I laughed a little when I heard him say that. A year ago, we wouldn't have known why he was upset or having a hard time sleeping. We would have been lucky to hear anything other than his repetitive speech or mimicry (echolalia). Now, I can carry on simple conversations with Peter and we see his communication ability improve nearly everyday. At this point, he has one more year in preschool and then the goal is to see if they can mainstream him into a regular kindergarten. I hope so. I worry a little about what happens if he does go into a regular classroom and I worry a little about what would happen if he doesn't. So I try not to think about it right now. I have a whole year to go and other things to worry about in the interim.

Nathan is my social butterfly. Despite his developmental problems, he's very smart and very social. His communication skills stink but he is beginning to approximate speech. It's a guessing game sometimes trying to figure out what he is saying but at least he is trying which is a huge improvement over last year. He has also gained significant independence compared to how he was a year ago. It was one of our big hurdles-- his lack of confidence made him whiny and fearful. He also wouldn't try new things. This has all improved. Now, of course, he's bullheaded, single-minded, opinionated and independent.

I couldn't be happier.

I Jinxed It

2007-04-30T23:55:00.000-04:00

Several days ago, I wrote about sleep and autism. Many children who are autistic have significant problems with establishing consistent sleep patterns.

I then made the fatal mistake of mentioning that Peter (who has had the worst sleep habits of all three kids) has settled into a routine that allows my husband and me to get a full night's sleep most of the time.

Well, that's no longer true. You may notice that the time stamp on this post is midnight. I am awake because Peter apparently feels that he doesn't need sleep tonight or at least not anytime soon. And since he has discovered that he can escape both gate and crib, there is little to keep him confined in his room. We have found that, by confining him in his room, we can get him to calm down long enough to go to sleep. Not now.

My husband did have a very good idea for fixing this problem but we still need to iron out some logistical issues. At the moment we are thinking of installing something like an old-fashioned barn door-- where the top opens separately from the bottom. If we install something like this, we could keep Peter in his room by locking the bottom half of the door from the outside and leaving the top open so he doesn't feel shut off from the world. Then, after he has gone to sleep, we could unlock the lower half of the door.

In the meantime, whether Peter naps and sleeps is anybody's guess.

My Pinch-Hitter

2007-04-28T12:32:00.000-04:00

My husband is off today which is unusual. Normally he works Saturday mornings and because he gets up really early (2:30 a.m.), he's exhausted by the time he gets home. This means he takes a nap (he falls asleep whether he wants to or not) and I have all three kids by myself for almost the full day with little relief in sight. (When he does wake from his nap, my husband is still tired and grumpy.)

Today, I get a little break. I won't have to wrestle Peter during naptime by myself. I won't have to harp at Gabrielle to clean up one of her many notorious messes. (Why is it dads can say something once in that deeper voice and kids jump to obey?) And Nathan will have another person with which to play jungle gym.

Now, if I could convince my husband to let me take a nap. . .

Ah, Destruction

2007-04-27T15:52:00.000-04:00

Peter, again, refused to cooperate last night at bedtime and ended up finally going to sleep at midnight.

And he didn't want to nap today so, being the Houdini that he is, he managed to escape my seemingly impenetrable jerry-rigged blockade while I was writing downstairs. He then decided that our upstairs bathroom needed to be turned into a swimming pool or small lake. I know this because, as I wrote, I suddenly heard additional water-dripping sounds apart from those made by our fishtank.

My kitchen ceiling was leaking.

I ran upstairs to discover, to my horror, that my bathroom was (and still is) greatly flooded. So I sit here, exhausted, out of clean and dirty dry towels, trying to decide if I should call my husband now or later to tell him.

Later, definitely later.

Peter and Sleep

2007-04-26T07:53:00.000-04:00

Last night we had to put Peter back in the crib (I was so looking for to taking it down!). As I mentioned in a previous post, Peter has gotten tall enough to hike his leg over the gate and hoist himself up and over. And kids with autism are horrible sleepers and nappers. Take the average child's reluctance to sleep or nap, cube it and you're close to what it's like.

Next step will be a sit down discussion with my husband to brainstorm our options. We'll end up deciding on a solution after we look at catalogs, visit the baby section of a store for safety ideas and take into consideration Peter's personality.

In the meantime, we're adapting to the situation as much as possible.

Haircuts

2007-04-25T09:57:00.000-04:00

It's amazing what we take for granted as "normal."

Getting the boys haircuts is so difficult. They are too old for a stroller so I can't strap one of them in while getting the other one's hair cut. And often I have to sit with each boy to keep him calm while this is going on. So I have to go with someone else-- I can't get their haircuts done by myself but it seems like my husband is always at work and he's the best one to go with me.

Yesterday, I finally broke down and bought a hair clipper kit. Up to this point I thought if I tried to cut the boys' hair I would tear their hair up and it would look awful. However, Nathan was beginning to look like a girl with his hair so long and fluffy (my husband and I both have thick hair so each of the kids has really thick hair).

So I clipped the boys' hair late yesterday and, even if I do say so myself, they both look pretty good. Granted they could have held still longer so I could trim the temples a little straighter but, considering that it was my first time doing it and that they held pretty still despite the tears, we did okay.

And yes, Nathan definitely looks like a boy again.

Nathan Still Sick and Peter Not Napping

2007-04-24T13:43:00.000-04:00

Nathan's fever broke over the weekend (his fever lasted about 24 hours or so) but he's been in a grumpy/clingy mood ever since. I'm fearful he has an ear infection (which is more common in kids with autism) and I'm praying he doesn't. He's supposed to see an ENT on Thursday as a follow-up to a previous appointment. However, when he has an ear infection he's extremely grumpy and extremely clingy and it's impossible to get anything done.

To add to this, over the weekend Peter figured out how to climb over his gate (without a chair or any other height enabling assistance). He has gotten tall enough that he can swing his leg over, hoist himself up and drop to the other side and, although I do have concerns about his ability to sing anything lower than a high tenor in the future, he manages to do this without getting hurt. Right now he is lying on our couch supposedly attempting sleep but it doesn't sound like we will have a successful naptime. And, again, I have writing deadlines.

Therapy and More Therapy

2007-04-24T10:40:00.000-04:00

I was shocked when we first started private therapy for the boys last year. An hour of speech and an hour of occupational therapy for both-- both therapists working together with each boy for 1 hour a week-- runs around $4000 a month. We are very fortunate, my husband works in Washington D.C. and his insurance through work is purchased in Maryland. Even though we live in Virginia, state law in Maryland applies to our insurance coverage. Maryland is one of only eight states that require autism services to be covered.

While our insurance applies discounts to the services, they still pay somewhere around $2500 a month. I can't imagine what a family goes through if they can't afford this. We found that having the therapy early on, as soon as they were diagnosed, helped both boys tremendously. Neither was enrolled in the special-ed preschool services at the time and it was a couple of months before either qualified to enter school. Now, both boys continue to receive private therapy in combination with speech and O.T. through their schools. We also work very intently here at home.

But without those early months in therapy, I would not have known whether what I was doing at home was right and the boys likely wouldn't be as advanced in their treatments as they are now. If only all states required this condition to be treated as it should be by ensuring that insurance companies included it in policies. Too many families go bankrupt trying to do what is best for their children.

The Need for Openess

2007-04-23T10:10:00.000-04:00

Autism can be very isolating for the parents of these special children. My husband and I have to make an effort to be kind and loving to each other. We don't often get to go out on dates so we have to make the best of the time we have together. Whether it means a movie night while the kids are supposed to be going to sleep or spending a few minutes every day really talking to each other, we have to have that time together so that we don't feel isolated from each other.

My husband's job keeps him away nearly all day between work and his commute so I have the kids most of the day by myself. During the school year this isn't so bad-- the day is split up into many different activities. However, come summer, I have to come up with some creative ways of entertaining three kids without breaking the bank or causing a county-wide state of emergency.

Most of all, I have to manage to keep my sense of humor and my sanity most of the summer.

Random Acts of Illness

2007-04-22T18:46:00.000-04:00

Friday seemed to start out fine but then I received a phone call from my sister saying that my daughter's school had been trying to reach me. Gabrielle was sick and my sister was on her way to pick her up.

While this was happening, Nathan was exhibiting signs of a fever but showed no other symptoms. When I checked his temperature later, he had a fever of 103 degrees. Strangely, Peter remained healthy throughout all of this and both Nathan and Gabrielle were sick only for about 24 hours.

Despite these random illnesses, Gabrielle was recovered and well by the time of her Tae Kwon Do belt graduation yesterday. She did very well and received her red belt (decided) which is her last color belt. In eight weeks she will test for her "black belt recommended" (it's actual color is a red stripe/black stripe) so she can beginning training for her black belt.

Peter is doing well with his potty-training. We still have "oops" moments but that's the same with every child. I spoke with Gabrielle's Tae Kwon Do instructor about enrolling Peter in a year. They mainstream the special education students so Peter would have to enroll on a trial basis to see if he is able to follow directions and take instruction. I'm hoping in a year that he will be able to fully participate in such a class (or at least enough). He could certainly use the focus such training would provide. And the self-defense aspect would make me very happy.

My List of Things to Do

2007-04-20T11:59:00.000-04:00

I hate forgetting things. I hate forgetting appointments or sippy cups or meetings with teachers. I write things down and still I sometimes forget. I think it's the craziness, the constant going-- meetings, therapy, school-- that can overwhelm my memory and the silly thing shuts down. I think that part of my brain gets overloaded.

Today, I confused one of Nathan's doctor's appointments with one of mine and switched the times. Of course, I realized what happened about ten minutes into what should have been his appointment. I tried calling and couldn't get through so we had to drive down there and ended up rescheduling.

I used to be able to remember meetings and appointments with ease. Once upon a time, I could remember things I read, where they could be found and what page they were on-- sometimes even a year or more later. Now I'm lucky if I remember to write things down.

The Things They Do

2007-04-19T14:14:00.000-04:00

Peter is a climber. And Nathan has learned much from his brother.

Peter is upstairs right now climbing in and out of his dresser drawers to reach the top-- although it's naptime and he is supposed to be sleeping. Earlier, Nathan was "performing" his new trick which he concocted only earlier this week. Nathan's big trick is to climb on the chest behind the loveseat, hoist himself onto the back of the loveseat, lie down and then roll down the front of the loveseat until he is lying on the seat cushions. He thinks it's great fun.

What strikes me as so odd, or maybe sadly indicative of the grip autism has on our family, is how blase I am about the boys behavior. Five years ago, I would have been all over Gabrielle saying things like "be careful" and "don't do that" or removing temptation from her line of sight. Now, the boys' behavior can often be so "out there" that minor things like climbing to sit on the dresser or rolling onto the couch cushions seem tame.

Or maybe I'm just learning to pick my battles :)

It's Amazing

2007-04-18T13:52:00.000-04:00

Peter continues to surprise me. He is stereotypical in his autism (with the hand-flapping and squeals) and appears to be mentally disabled to many who meet him but he's very smart.

As I've mentioned before, he is learning to potty train and today he has been coming up to me and handing me a diaper to let me know he has to go potty. He has volunteered to go potty very few times since he started going consistently so I've had to remember throughout the day to ask. Peter's very visual and I'm sure when he saw the diaper I had left out for his brother, it seemed a natural extension to use it to tell me what he needed. Now the next step is to get him to use his words all of the time instead of occasionally.

His favorite thing to do (for now) is to say the alphabet and sign each letter as he says them. He is very much attracted to numbers and we've been adding more shapes to his geometry knowledge. He can identify all the usual shapes (star, moon, diamond, rectangle, square, circle, oval, etc.) but he can also identify an octagon (he knows stop signs are octagons) and the current favorite-- trapezoids. His teacher says that she can count on Peter to answer questions during circle time and he always knows the answer.

Most children with autism often have above average intelligence and this is the case with both Peter and Nathan. However, I worry that with Peter, as he grows older, people will not see him but his autism (Nathan isn't as obvious with his stimming). I also worry that people will assume that he is "slow" and try to limit him. This will be an area we will have to learn to contend with and teach him how to break the stereotype.

Words, words and more words

2007-04-17T11:50:00.000-04:00

Nathan is on the verge of talking. I say this because he is starting to use words or parts of words to express himself as opposed to just yelling or squealing. It's very limited speech-- "tha" for "that" or "no" or "tea" (to describe what I had in my hand) but I'm so excited, I can't wait to see what he will do next!

Nathan is the baby and you can tell quite quickly that he knows it. I don't know how he knows but he does. Part of the reason I knew something was wrong originally was because he wasn't maturing as quickly as he should have (both developmentally and emotionally) and I was getting frustrated with how baby-like he was acting when he should have been acting more like a toddler. I find it strangely funny that the more I want him to act his age the more he acts like the spoiled one. So I can't force him to act his age, I can only encourage it in as many situations as possible.

Don't get me wrong, Nathan is an absolute sweetheart and I love him tremendously but for someone who can't speak, he can certainly let his opinion be known. Granted a lot of his behavior comes from his lack of speech and his desire to assert himself despite it. My husband sums up Nathan's opinion on toy possession, for example, with the phrase,"what's yours is mine and what's mine is mine, too." Of course it doesn't help that the natural give and take among siblings is stunted by the boys' social skills-- particularly Peter's. So Nathan takes and often doesn't give but we're noticing that Peter is starting to "fight" back by saying "no" or "I'm playing with this." And we're trying to remember to remind Gabrielle that she doesn't have to give up something the minute Nathan shows an interest in it.

The Need to Communicate

2007-04-16T00:28:00.000-04:00

I think one of the most frustrating aspects of dealing with autism is the poor communication or speech skills of children diagnosed with the condition.

Peter's speech is consistent with a child somewhere between one and two-years old. Nathan rarely speaks at all. Most days we do okay. Peter will come up and tell me something using just a word or short phrase and it is often enough for me to figure out what I need to ask him in order to get more information. But even this gets to be nearly an impossible task when he is tired or mad-- he has a harder time concentrating on the words which just serves to make him angry.

Nathan communicates primarily using sign language although he is starting to name objects more frequently than he has in the past. He is pointing at cars (real ones and toys) saying "car." Today, he dropped something and said "Oh, no!"-- something I think he gets from me. Nathan's hearing was recently tested because we are trying to rule out any hearing problems since when he does speak his voice sounds flat-- like those of friends I had in college who were deaf. It's difficult at this age however to determine if he has tonal or range deficiencies but he did pass all of the other hearing tests. We have to return in about six months to have him tested again because he wouldn't respond to the tests using tones.

I can't say that the communication issue is guaranteed to get easier but it usually does. When Peter was diagnosed, he was just starting to speak again after nearly nine months of silence-- and even then all of his "returning" speech was mimicked.

So if it takes a lot of give and take and sign language to figure out what both boys are trying to say, I'll take it over the mimicry and silence anyday.

Of Bedtimes and Naptimes

2007-04-14T09:19:00.000-04:00

The boys have been home all week from school (Gabrielle goes to a private school so she went back on Tuesday). And as things would go, both of them decided that napping was low on their list of priorities and took a nap only once this week. (And of course, I have writing deadlines looming over my head.)

Sleep, for children with autism (and their parents!), is often a hit or miss game. Many parents experience sleep-shortened nights or sleepless nights while their little angels seem to have no concern over the lack of sunlight outside their windows.

Peter did this for awhile and I know we are likely going to experience it again in the future. Some parents find it occurs in spurts every few weeks while others find that their children go one way or another for a few years and then switch.

A few months before we got Peter's diagnosis, Nathan was on the way and, since we still live in a small home, we were trying to get Peter to share Gabrielle's room so we could put Nathan in the nursery. Instead, Gabrielle was being shorted of very needed sleep. Peter would bang on the walls with his feet, get up and play, talk gibberish, etc. My husband would sit in there with them for two or three hours trying to get Peter to calm down so he would go to sleep. I was on bedrest for pregnancy induced hypertension (I had the condition with all three children) and couldn't help much.

Finally, Peter was moved back into his old room into a toddler bed and now a gate is put up at the door when daddy leaves and says goodnight (the gate is removed after Peter goes to sleep in case there is a fire or he needs to get up for some reason). Peter still horses around some but not as much and he listens to music as he goes to sleep. He has books to "read" by the light of a nightlight and his stuffed dogs to comfort him. And he still uses a pacifier to help him go to sleep. For now, he sleeps all night. Nathan sleeps in our room but he too sleeps all night now (he woke for half an hour to an hour around 2:00 a.m. for the longest time) and we have debated on putting him in a toddler bed in Peter's room. But everyone get a full night's sleep so we hesitate to mess with perfection.

How many years or months will this last? I don't know--but I'll take it as long as I can get it.

Our Daughter Lives Here Too!

2007-04-12T00:33:00.000-04:00

Just in case you didn't notice it in my bio, my husband and I have an eight-year-old daughter. It often seems like siblings get left out when you are dealing with one autistic child but two--whew! We have to make an extra effort to notice her achievements and praise her for things she has accomplished.

She is currently completing her requirements to get her red belt (decided) in Tae Kwon Do. After that, she'll test for her "pre" black and begin training with the black belts. She'll test for her black belt when her instructor feels she is ready but it's usually anywhere from six months to a year.

Gabs began taking TKD when she was 4. We enrolled her because we were scared to death she would walk off in the mall (which she did do) or walk up to a complete stranger and begin a conversation like they were her best friend (which she also did). It was stressful to shop with her because I couldn't really look at the merchandise in my hand--I was too distracted trying to keep an eye on her! I don't know how many times I found myself holding an item that I didn't like yet couldn't remember picking it or even truly seeing it for several minutes.

Of course after Peter and Nathan's diagnosis, the developmental pediatrician (who did not meet Gabrielle) made a comment in passing about Gabrielle likely having mild Asperger's. When she did Peter's evaluation, she had asked about Gabrielle's development and then as we talked, she began asking very pointed questions such as "do you feel that she is often emotionally immature but seems to grasp concepts that seem beyond her years" to which we would laugh and say "oh, yeah, you've pegged her." I thought the doctor was thinking ADHD-- Gabrielle is certainly very "busy" and always has been-- but at Nathan's diagnosis the doctor offhandedly said something about Gabrielle having mild Asperger's. You can imagine my shock. I realize that this was not a true diagnosis (it helps to have the patient present) but it has given me insight into Gabrielle's behavior (such as trying to be pals with perfect strangers or her obsession over tornadoes) that I have gotten frustrated with before. Now I try to redirect Gabrielle and help her use her intelligence to overcome her fears or to establish goals.

Is it Asperger's? I don't know. But if it is, she's grown past the worst of it and this gives me hope. As the boys' brains mature, they may "outgrow" a good portion of their autism as well.