Coping with Autism

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.

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.

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 ...

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 th...

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....

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.

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 out loud (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.

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 elec...

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 every day, 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 as...

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 ...

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.

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.

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.

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 fou...

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!

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.

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.

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 ba...

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.

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 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...

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.

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...

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.

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 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 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...

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.

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.)

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.

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 Da...

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 lock...

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 of...

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.

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!

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 :)

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 month...

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 wonderi...

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.

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.

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 litt...

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 bar...

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. . .

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.

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.

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...

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 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 ...

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.

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 chi...

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.

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...

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,...

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 a...

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 ...

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 nu...

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 tr...

Peter actually told me he had to go "potty" today. Again, this is a big deal-- so far I've had to ask him, he hasn't initiated anything. We're making progress but this is often how Peter does things. Once he achieves a level of confidence in something he doesn't look back. We are very fortunate that he doesn't regress or hasn't shown any tendency to do so. Our biggest struggle so far (and there have been many) seems to be with his allergies. He has the stereotypical autistic look (frail upper body, often dark circles under the eyes, etc.) and the wretched laundry list of allergies. So far, Peter is allergic to soy, beef, potatoes, birch, oak, walnut, grass, dustmites, cats, dogs and. . . I'm forgetting something. Nathan tried to say "fish" again yesterday and if you haven't already guessed, we have a fish and two cats -- and yeah, I know, with Peter's allergies, etc., but the cats are getting old so we won't be replacing them ...

I'm not sure where this is coming from but Peter is coming up to me, looking me in the eyes and trying to wink. It's terribly funny. He screws up one eye and then the other and then watches while I wink at him. Nathan doesn't feel well today but he was showing off on Friday. He used about five words he had never used before (of course this is the one who rarely, if ever, says anything verbally) and he surprised both me and his teacher. Now, if we could just get a repeat performance :)

We spent our weekend at my in-laws in New Jersey (and I apologize for not posting--my father-in-law's computer wasn't cooperative). My niece is also on the autism spectrum so it's always interesting to compare notes with my sister-in-law. My niece, "B," is between my boys' ages so as Peter leads us into new territory, we compare Nathan and B to what Peter has done or is doing. On another topic, Peter is (finally) potty-training which you will discover, if you haven't already, is a big deal. I know one mom (also with two boys on the spectrum) whose oldest at 10 is still not potty-trained so this has been a big leap forward for us.

My husband and I learned in December 2005 that our son Peter, who was almost three, was autistic (specifically mild/moderate autism). In March 2006, we learned that his little brother Nathan was also autistic and was given a specific (or non-specific) diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). Since then, we have joined the ranks of about a million other families who are coping with the everyday challenges and stresses of living with autism. If you find comfort in these postings then this will have been worth it. Let me say that each autistic child is unique just as each neuro-typical child is unique. Anything my children do or do not do may or may not be something your child does. Look to these postings as someone who walks with you-- we'll try to find humor in the odd things our children do and comfort in each of our challenges. Be sure to find support-- either in a local autism support group or with another family. Also, check around for doc...