Buying clothes for son with autism a real challenge

My son's go-to pants
for school from Lands End 

Most parents view clothes shopping for their kids as a fairly straight-forward event. Go to store, pick out clothes – maybe have the little ones try them on – and then head home. Not so for me – and I’m guessing other parents of children on the autism spectrum. I thought of this yesterday when the Lands End school uniform catalog arrived in the mail (didn’t school just get out?)

Despite OT, my son has poor hand-eye coordination so any pants with zippers and buttons are out. When he was younger, it was fairly easy to find pants with an elastic waist. Not so any more. He now wears a size 18 or 20 and there are few choices that have an elastic waist besides running pants. While those work for him on nights and weekends, he can’t wear them to school. He goes to a private school with a dress code that requires khaki pants. I’ve searched high and low to find khaki pants with an elastic waist. I have gotten lucky at Lands End although they are pricey. As for jeans – another staple of many teens’ wardrobe -- I previously found elastic waist jeans in his size at Walmart, but not anymore. I guess he is now too big.

Shoes are another challenge. Just like with zipper and buttons, tying shoes is a challenge for Michael. He can do it, but it takes a long time and his knots don’t seem to last long. When he was younger, Velcro shoes worked great, but as his size got larger – he’s now officially a men’s 9! – finding shoes with Velcro is nearly impossible. I finally found online some laces that tie and lock into place that I can use for his shoes.

As for his shirts, Michael is a chewer – although we have cut down on that problem dramatically in the past few years – but I do have to watch out for anything with drawstrings or zippers, which can be very tempting for him to start chewing on.

Other children may have problems with tags and fabric; luckily, Michael hasn’t had that. But clothes with “itchy” tags can complicate clothes buying for some parents.

I guess buying clothes – something that is simple for many parents – is just another challenge we moms of children on the spectrum have to contend with. 

Summer goes by fast, but days are very long

While I was elated when school ended last Friday and enjoy being free of the daily drives back and forth to school, summer vacation is a real hard time for us. Having days without a set schedule are not easy for Michael and most other kids and teens on the spectrum. Michael constant needs help coming up with what to do and keeping track of time. "You mean it's not time for lunch? I've been up forever and starving," he will say at 10 a.m.

I'm sure the days would be easier if I said play video games all day, but I won't. Instead, I've come up with a list of activities he can choose from and have set rules in place, such as asking before eating anything and limiting electronics time. But even with that list, he can become out of sorts about what to do. I work from home so he'll come into my office looking for something to do and someone to do it with. I get up at 4 so I can get in some work before he gets up at 6 and squeeze in work while he's occupied. I also wind up working weekends, too. But it's still a challenge being activity planner-in-chief.

In previous summers, Michael often found a willing playmate in his sister for the different games he's made up or to play Pokemon, but as she's gotten older, she's less interested. I've also hired babysitters before, but now he's 14 and Alli is 12 that just doesn't feel right. I've signed Michael up for some afternoon computer classes that give him something to do all June, but I'm not sure yet about July and August. The three of us also went through volunteer training to help out at a cat shelter this summer to give us something else to do.

As he's gotten older, Michael's interests have grown in different ways than his classmates. While video games are popular among all boys, I'm  sure not many of them are interested in Pokemon cards or Garfield books. Calls from classmates to get together are few and far between. I try to plan activities with others, but don't like to always be the initiator. 

I'm grateful Michael is active in taekwondo year round so he has something to do several nights a week. Right now, however, the days can be pretty long, but I also realize that next summer he may be taking a summer school class before his first semester of high school or perhaps have a job. I'm trying to enjoy this time and know I'm lucky to have a flexible schedule so I can still set aside fun times like taking them to the beach, but that's easier said than done.

I know summer doesn't last long, but sometimes the days sure feel like they'll never end.

Drowning in a sea of paperwork

A sampling of my Michael files.

The pile of papers is barely manageable and represent nearly 10 years of evaluations, progress reports, IEPs (individual education plan) and test results. The papers --  jammed into several folders -- represent the quest we've been on since Michael was in preschool. I revisited the piles this week as I looked for the requested records for his psychiatric evaluation later this summer (I won't even go into how the doctor doing this eval did his two previous evaluations, but doesn't have access to those records because of local healthcare system changes.)

Looking through the records reminded me of the long journey we've been on. Like a dutiful parent, I took Michael to the school district 3-year-old screening and they said he was in the average range. He went to daycare and besides being slow to potty train, no problems were reported. The spring before Michael would have started kindergarten, his daycare/preschool teacher caught me off guard by saying Michael wasn't socially ready for kindergarten and recommended another year of preschool. After much discussion with Joe and officials at different schools -- we visited every Catholic elementary school in our city -- we decided on a half-day, 5-day preK program. Michael seemed to enjoy it, but at pick-up from time to time, the teacher or aide would mention he had problems with directions that day, but overall things were good. At a conference in February, his teacher suggested we have Michael evaluated since he was behind in social skills and motor skills. We got a referral and waited three months before Michael was tested. The doctor looked for ADHD and autism, but found nothing concrete and sent us on our way.

The next fall, kindergarten started and all went relatively well. Then, first grade came and Michael's teacher expressed concern with his reading and writing. We connected with a tutor who ran multiple tests and found he was behind in those areas. She also diagnosed him with dysgraphia, which means the message of how to spell a word gets messed up on the way from his brain to his hand. So Michael can tell you orally how to spell a word, but has problems writing it. Michael started working with her on his reading and made big strides. We received a referral to OT from Michael's pediatrician to help with his writing skills and she tried to help with that. She also diagnosed Michael with poor muscle tone, too. He did six months of therapy -- the max our insurance would allow -- but never saw a lot of change. 

I thought we had it handled and then second grade came and the wheels came off. Michael -- who had always been a chewer -- developed even bigger problems chewing. He would come home with wet sleeves and a collar. Michael also started chewing on his arm. We also noted he was rocking more. At school, his teacher said he would spin a lot, couldn't stand still and had problems paying attention. While he was now doing well academically, it was clear something was wrong. I called to get Michael another evaluation with the psychiatrist. We waited three long months for his testing and evaluation. When the doctor told us Michael had Aspergers or high-functioning autism, it was such a relief. (I suspected that based on my readings and research). But when I asked what happened next, she said, "just work with your school. There's not much we can do to help." 

This is where my heart sunk. I loved our school, but since it was private there were no public school resources available. I emailed our principal -- it was by now summer -- and she said when school started in the fall we would request an evaluation from the local school district to see what services may be available. (What happened with the school district is a very long story for another blog post; let's just say it was a giant cluster and the state needed to get involved.)

The truth is, for someone like Michael who was diagnosed after the critical intervention ages of 2 to 5, services that can make a real impact and change are few and far between. Research has shown that the earlier intervention services begin for children with autism, the better the results. And autism isn't something that goes away or be cured despite what some celebrities allege. That summer -- we also moved into a new house and went on a two-week trip to visit relatives out East -- I devoured everything I could about autism. I knew the road ahead was long, but really had no clue what to expect. Five years later, I still feel the same way: the road ahead is long and I don't know what the future holds.