Coping with Autism

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

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.

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 glanc

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

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!!

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.

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.

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!

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.

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, &

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

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,

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

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.

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-- albei

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

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 fun

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 k

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

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

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

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

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.

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. . .

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 mem

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.

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 ar

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 se

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 certai

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.

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

Well, at this point we know we will be 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."

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).