Ashton is autistic ….. big DUH to most of you, right? Many of you might wonder what our autism journey has been like though, as I don’t think I’ve ever shared our entire journey here on my blog…. so, here ya go!
Ashton was born at 38weeks on April 14, 1999, after me having been on bedrest from 29-36 weeks due to pre-term labor and complications from a bladder infection. We ended up having to induce because in the last month of my pregnancy with him, I gained nearly 20lbs and my blood pressure was rising and they were concerned about me having a “large” baby. Well, that “large” baby turned out to be a 5lb 14oz, 17.5in PEANUT! 🙂 We noticed right away that he had problems with reflux and as that first year went on, he had many issues with different foods. He couldn’t have soy/dairy, no orange veggies and corn seemed to bother him as well. Through all of that, he was a happy baby, developing at a pretty normal pace. The only out of the ordinary thing was his rather large head size/growth. He was, however, meeting all of his milestones on time (some, even early!) and we didn’t have any real issues other than the reflux/food issues.
We started to worry about Ashton’s development around 15months old. He wasn’t walking yet, was starting to “lose” some of his previously spoken words, and was starting to engage in (what we now know as) typical autistic behaviors. He was starting to be “obsessive” about lining up little hot wheels cars, flash cards, etc… basically any kind of small toy. He would lay underneath a ceiling fan and stare up at it for an unusual amount of time. He would flap his arms and clap his hands for unknown reasons. He was withdrawing socially (when before, he had been a very happy and social baby) and was just showing some concerning behaviors. At the time we didn’t think anything of those behaviors as we didn’t know anything about Autism at that point. We just knew he wasn’t walking yet. It took him until 22months before he finally started walking and probably almost another year before he was really stable and quick on his feet.
The summer after he turned 2, he experienced what a pediatric neurologist deemed a “seizure-like” event. He underwent some testing and was deemed “seizure-free” and has never had another incident like that one, isolated one. The neurologist did say at that time he felt like Ashton might be autistic and warranted further evaluations. At this same time, we had finally gotten Child Find involved and were undergoing evaluations to see what was going on developmentally because he was still not stringing words together, wasn’t making eye contact and had very little interest in interacting with the world around him. After many tests, a lot of paperwork and talking with specialists, we finally got a diagnosis at age 2.5years old, Ashton was severely autistic. He had maybe 4 or 5 words in his vocabulary, was delayed in all areas of speech (pragmatics, expressive and receptive), was very socially delayed, was delayed with his gross motor skills (wasn’t really running, didn’t jump, etc) but oddly enough, his fine motor skills (at that time) were on the above-average side of normal. Weird.He started in a special ed preschool program at 32months of age. He would go to school for a 1/2 day, 5 days a week and received speech therapy and 1:1 instructional time as well. Let me say here that we lived up in Northern VA at the time, in Loudon County. We got way more services than I thought we would and that very first teacher was a very crucial and critical part of helping and teaching Ashton how to communicate his very basic wants and needs. He picked up on the concept of PECS very quickly and a few months later was stringing PECS cards together to make small sentences to express his wants/needs. COMMUNICATION, it was amazing! He then started using something called a pacing board…. it was to help him space out his words so that he could learn to speak the words at a speed that was understandable, otherwise his words all came out as one big jumbled mess. He did very well and aside from only being 2.5/3-years-old when he started, he started communicating but was still very much isolated in his own world. His communication was limited to his wants/needs and was never really appropriate. But, he could communicate SOMETHING so we were thrilled.
That fall, he was accepted into an all-day autistic children’s preschool program. He would get his speech therapy, some group OT therapy and the classroom was based on ABA principles. I fully believe this classroom was another crucial part of his current success. He got to go out on CBI (community-based instruction) trips and did fantastic. He was even going back to the (general) special ed preschool program for part of his day near the end of the year because he didn’t need the intense therapies, instruction that the other children in the autism class needed.
Then came the first big blow….. we moved from Northern VA to the Hampton Roads area when Ashton was 4. Keeping in mind we’d had a baby only a year prior and not only were we moving, but we now had a very active and precocious toddler around in addition to Ashton and we were in addition, trying to meet his needs. We made that decision so that we could be closer to the family (in Northern VA we didn’t have any close family nearby) and for our children to grow up with their aunts, uncles, cousins, and grandparents. What none of us anticipated though, was how much that move would set Ashton off on a horrific downward spiral. They didn’t have an autistic children’s program in the school district so he got thrown into the “catch-all” special ed preschool program. Which, probably would have been successful if we hadn’t of just thrown him for a loop already with a move and a younger brother the year prior. It was six months of pure hell at school. We finally got him moved into a regional education program for children with autism. He did much better and thrived in that program. Over the next couple of years he progressed, maybe not as much as we would have liked in some areas (potty-training being one of them) but then in others, he seemingly out of nowhere knew how to do things (reading being one of those things). He went through several teachers and schools (uncommon in the special education realm, usually children have the same teachers/stay with the same school for elementary, and then the same cluster group in middle school and so on….).
In 3rd grade, Ashton was doing so well, I wanted to put him back into the school district’s special education program. One of the reasons was I wanted him to have more socially appropriate peer models. Also, he didn’t need the intensive behavior systems that the regional program provided and he was doing very well. We made the change mid-year, and he did fantastically back in a “regular” special education classroom. The classroom was mainly for autistic children and he got the opportunity to go to specials (art, PE, music, computers) with the regular education students as well as going to home-room with them as well. He flourished but still….. we wondered what more could be done.
That summer before 4th grade, I decided that I wanted to try the gluten-free and casein-free (GFCF) diet with Ashton. Many local parents talked about the successes they’ve had with their child on the diet and while Ashton was doing wonderfully, I wanted to see if he would benefit from the dietary changes. One of the major issues at this point was that he wasn’t potty-trained yet! Do you know how difficult it was to change the pull-up/diaper of a largish 9-year-old? DIFFICULT! We’d tried unsuccessfully over the years to potty train Ashton, and just as soon as I ‘d think we were *almost there*, something would happen and he would fully regress back into the pull-ups. However one day, a month after his 10th birthday, he just decided to up and start using the bathroom and was completely potty trained within a week or two! (night & day-time trained, as well both pee and poop). I think part of the problem may have been his very nasty bowels. He would literally poop upwards of 4-5 times a day (or more) and they were all, very very loose. So, we tried the diet and to our happy surprise, all reflux issues went away (yep, those issues lingered off and on throughout the years, to the point we medicated him for reflux) AND his bowel issues became non-existent. However, he still had nasty “rashes” on his bottom… turns out, YEAST was the culprit. How did we find this out? We started seeing a new doctor (who follows the biomedical interventions that have been known to help children with Autism) and one of the tests he recommended was the one to test for yeast. Come to find out – yeast was a BIG problem for Ashton and he started on antifungals. Oh lord the behavior was HORRIBLE with the yeast die-off. But, the rash went away and some of his more “stereotypical behaviors” started to ease off. It was amazing! He stayed on the GFCF (and free of other various things) for 2.5 years…. we started to slowly add things back into his diet and he now eats normal foods although we do limit certain items (macaroni & cheese, popcorn, and anything with red food dye).
The only really “rough” period we went through in all that time was a 3-4month period during his fifth grade year. He had gotten very obsessive about shutting doors and several other things. We started him on a small dose of Paxil (used to treat OCD) and it was horrible. The OCD stuff died down but he literally went psychotic! He cut his hair (!!!!) at school (after having just gotten a hair cut the day before) and he was throwing MASSIVE tantrums… EVERYWHERE. He was constantly “attacking” me and pulling my hair. I had a patch of hair missing at the top/front of my head. He and I were both covered in bruises…. me from him biting, hitting, pinching and kicking me and him from me having to restrain him from pulling my hair and biting me. It was an awful period of time. He was running out of the house in the middle of the night and he would even run out the front door in the middle of the day and take off down the road. One of the last straws was he jumped out of the shopping cart one night at Walmart (just a few days before Christmas) and took off running through the store, screaming as loud as he could. NOBODY stopped to help, and I got lots of weird stares. I finally got an employee to help me get him back into the cart and walk back up to the front of the store (where I had left Holden). Turns out, an angel of a woman saw what was happening and stayed with Holden while I took off after Ashton. They got me out to the car and I realized that they were putting my groceries in my car (I had been at the checkout counter when he jumped out of the cart). The woman had paid for my groceries! Wow! What a blessing. The very last straw was one day the boys and I were headed over to their great-grandparents as I had to do my laundry there since our washing machine was broken. Ashton jumped out of the car while I was driving down the road. I basically didn’t take him anywhere for almost 3months…. other than an occasional speech or OT appointment (if I didn’t feel safe taking him in the car, I didn’t take him… they knew the situation that was going on). We ended up getting an appointment with a psychiatrist at CHKD (Dr Dozier) and ended up finding out the Paxil was the cause of all the problems. Ashton basically had what amounted to a behavioral allergic reaction to it. We figured this out because, SOMEHOW, Ashton must have picked up on which of his medicines was making him feel bad, and had stopped taking that one pill (Paxil). Ironically, all 3 pills he was taking at that time were all small, blue pills. How he figured out that one was making him feel bad, I’m not sure. Once it was out of his system he went back to his happy-go-lucky self and had a great rest of the year in fifth grade. I know that all sounds problematic…. but the problem was mainly at home, and usually only with me. He was a usually pleasant child at school, so it wasn’t a global issue.
Then the next big blow….. middle school. What we expected to be a happy and joyous time, turned out to be a literal disaster. Ashton was SO excited about middle school, in fact, asking to go to school the day after his last day of 5th grade! He was thrilled to be moving up to the “big kid” school! Within the first few weeks, I had a sinking feeling. He had started running out of the classroom, something he’s never done before. Sometimes he was running with a “goal” (ie, getting to the bathroom, his classroom didn’t have a bathroom in it like all previous classrooms did), but other times he seemed like he was running to “escape”. Of course, I kept getting told: “it’s middle school, it’s a big transition for ‘normal’ kids, but even more so for autistic kids, he’ll adjust”. Well, things never improved, and only got worse. We had several major incidences happen. He threw a ball at a kid’s head, he stripped to complete nakedness IN the classroom (don’t ask me how this happened in a classroom with at most 6 children and 4 adults), and a few days later, stripped to nakedness in the bathroom and went into the hallway and ended up getting suspended. It was obvious to me that something was going on, but I couldn’t for the life of me figure it out. Lots of other bizarre things happened (peeing in a cup and drinking it, escaping from the building and running laps around it, which he got suspended for running out of the building ) and things just continued to decline. He was sent home probably at least 2-3 days a week near the end of his sixth-grade year. To ME, it was very obvious that he wasn’t the problem. He’d NEVER displayed ANY of those problems before, never! He ended up doing summer school that summer following sixth grade. Between camp (4 weeks), summer school and ESY services (speech, OT and 1:1 academic instruction) he made a lot of awesome progress. I was able to conclude that he really was NOT the problem. Well, seventh grade started and the weird and erratic behaviors started all over again (same teacher, same classmates). He got suspended within the first couple of weeks of school and again another week or two later. I was DONE. FED UP. PISSED OFF AT THE WORLD.
After 25+ hours of IEP meetings, many phone calls to the special ed director, threats of filing complaints, many notes sent home back and forth from home and school, I finally gave the school an ultimatum. “Move him to another school, or else I will file a complaint. It must be done by such-and-such date”. That got them in gear and he got moved to another school, with the same LEAD classification within 2 weeks. That doesn’t happen often. Most kids who are sent out of their school are moved into the regional education program, SECEP (which if you remember, Ashton had been in just a few years prior to). I felt Ashton deserved a fresh start with a new environment and staff, and I WAS RIGHT! Imagine the feeling of validation I get when I see someone (teacher/administrator) from his old school and I can say he’s doing AWESOME! He’s got great grades! He’s participating and all of those WEIRD/erratic behaviors he displayed at YOUR school, are GONE!He’s now in eighth grade and is doing VERY well! He’s maintained an A/A- average all year so far and in fact, for the end of semester averages, maintained 3.85-4.0 – ALL As!!! 🙂 SO PROUD! He’s becoming incredibly social and loves being a part of his classroom. He’s participating in group work, he’s doing a lot more of his work independently, and is a contributing member of his classroom. He’s got friends (see my last post) and he’s becoming an incredible young man!
His Autism journey isn’t over and it likely never will be. He will always have autism and will probably always struggle with communication and social interactions and fitting into society’s “norms”. But he’s got amazing friends (Leber family, Goldman family, that means you!! :)), he’s got teachers (both past and present) that adore hearing about his amazing progress and he will always have his family at his side and backing him up. He’s nowhere near the quiet, non-talking, off in his own world kid that he was at 2.5years old and just in the last year has made an incredible amount of progress. So much so, that I won’t even attempt to guess where he’ll be when he’s an adult. He will be exactly who he’s meant to be …. ASHTON, and we wouldn’t want him any other way :)**edited to add** Ashton is actually doing SO well right now, that we’re contemplating moving him onto high school in the fall! At the beginning of this school year in September, I would have said, absolutely no way. I want to keep him in his current placement. But he’s gaining new skills almost daily and improves each and every day. His current teacher would like to keep him another year (and I don’t doubt that it would be a good idea), but the idea of moving him back into our own “home” zone again is very appealing. Nearly his entire class is moving onto high school in the fall and all to their “home” school, which is not Ashton’s home school, obviously. So even with the same teacher/school, he’d have to get used to a whole new group of classmates. It just almost feels like it would be better to do the whole move at one time, rather than spread that over 2 years. Now, I haven’t made up my mind, one way or the other. I’m still waiting to get in and talk to the administration at the high school he will go to. But so far, they’ve been very welcoming with information and emailing me, keeping me updated. I have a good feeling about it, but I won’t really know until I get in the building and see what the placement looks like, on whether or not we’ll retain him for a year or let him move on to 9th grade. It’s a hard decision and is one that could have a negative impact either way but either way could also have a positive impact. We’ll see 🙂
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