On the outside looking in...again

What should have been a regular, casual trip to the beach with cousins who we haven't seen in years should been fun and stress-free. Unfortunately, like most things in our family colored by autism, it was anything but. While my daughter played in the water with her cousins and other relatives, Michael was on the far side of the swimming area by himself. At age 14 and nearly as tall as I am, he's not invisible.

I went out by him in the water for awhile and talked a bit to him about Power Rangers and Pokemon (yes, he's transfixed by Pokemon Go). After about 10 minutes, he asked if he could be alone. I returned to the beach trying to not look disappointed. This was one of those days when I just don't "get" autism. I don't know why he wants to be all by himself, even telling me -- the person he's closest to -- to go away for awhile.

I slowly returned to the shore. While sitting on the beach, I felt the tears well up behind my sunglasses as I watched all the kids in the water -- not just our family members -- interacting with someone else and saw him spinning away and waving his arms every once in awhile. 

The trip to the beach was a microcosm for our entire visit with family members -- some we haven't seen in three years. He didn't speak much to his cousins, aunts, uncles and grandparents. At a cookout, he retreated to a bedroom to play his DS and read Garfield books. I did coax him out to play a game of UNO with a couple of younger cousins, but that was it. He always says hello to people when we arrive and goodbye when we leave, but that's about it. I feel like he's an invisible member of the family. He's there, but not there. People don't ask much about him -- not even where he is.

Throughout this and every visit whether it's with family or friends, I feel like I need to be at his size, whether it's helping him get food or making sure he has something to do so he doesn't become too bored or at least is busy enough so we can get in a decent visit before we have to leave. So while most people are relaxed and can't wait to visit with family or friends, trips away from home are anything but relaxing. Autism definitely affects our entire family and the older Michael gets, the harder it gets to fight its effects.

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.

Yes, he can: Important to let kids succeed on own terms

Michael with his black belt certificate.

There's a sign that hangs up at the school where Michael takes taekwondo that says "Yes, I can." Last week while watching him teach the Tiny Tigers class (kids under 6), it struck me how that sign fits Michael perfectly. Yes, he can do it, but on his own timing.
Earlier this week, Michael turned 14 and I thought back to when he was born and how many of my fellow co-workers at the newspaper asked what sports he would play -- knowing that Joe and I both like sports a lot and are fairly active -- and if he would be a Badger (I'm a UW alum). But from the get go, Michael showed little interest in sports and never had the best coordination (his sister got all the athletic talent in the family and then some). At first, I was a bit frustrated as we enrolled him in starter soccer, t-ball and basketball and watched as he was more interested in the post-game snack than what was going on during the game. (This was before Michael was diagnosed with autism.) Looking back, I am mad at myself for placing my hopes and expectations on him -- everyone doesn't have to like or play sports. And by the time, he got to second grade -- just about the time we received his official diagnosis -- Michael quit all sport activities.
But in his own time, Michael found his sport -- taekwondo. I originally had the idea to give it a try after my nephew did it and my sister raved about how it helped him focus. Michael's in-home therapist took another job and I was looking for something he could do while we looked for another one. I came across a post on the local autism group's Facebook page about a local taekwondo school that was very welcoming to kids on the spectrum. Michael attended the free class and said he wanted to continue.
Since I knew his interest in topics didn't often last long, I went with the month-to-month membership vs. the black belt plan where you pay a single fee covering your path to becoming a black belt -- usually about two years. But as time went on, Michael's interest remained and he kept plodding along. He rose through the ranks and earlier this year, Michael received his black belt right on schedule. It was a huge achievement for him. For his test he performed the forms for all of the different color belts. I don't even know how many different moves there were, but he remembered them all (quite the achievement for someone who can't always remember to brush his teeth or his teacher's name). He also had to spar opponents and break two boards. He worked really hard and I was so proud of him -- to me, it was better than seeing him star on any field or court.
After earning his black belt, Michael was invited into the leadership program where he's learning how to teach the younger kids and eventually may lead the larger classes. He's about four months in to earning his second degree and still remains interested. Michael has definitely taken that "Yes, I can" sign to heart.

Waiting is the hardest part

Frustration. Anger. Worried. That's how I felt yesterday when the local children and teen mental health clinic finally called me back to set the appointment for Michael's re-evaluation...and the first available date is mid-August. The re-evaluation his psychiatrist ordered at least three weeks ago. And this appointment would just be to discuss what testing would be needed. Then, the actual test date will be set. So much for getting it done this summer.

Michael's new psychiatrist--who focuses on teens and teens with autism--requested the evaluation saying it's common to do one every few years since things change. No, they won't find that his autism and anxiety have magically gone away, but they may find other issues going on whether its OCD, ADD or something else that need to be addressed. The doctor told me that when kids are first diagnosed with autism that it can sometimes mask other problems that don’t become apparent until later on. Since last fall, Michael has been “off” – more anxiety, a higher tendency to self harm, behavioral changes and overall grumpiness (that last item might be related to his age).  First, we tried an increase in his medication and when that didn’t help, we again tried cognitive behavioral therapy – but that again failed to see any results (try asking a kid with autism about what he is feeling and you’ll see how that when no where fast). Next up was the referral to the new psychiatrist. That psychiatrist increased Michael’s medication again and recommended that the original psychiatrist who diagnosed Michael do the re-evaluation since she had a better perspective. That led (finally) to yesterday’s phone call.

I don’t fault the healthcare provider. Believe it or not, this is faster than it was five years ago when Michael received his initial diagnosis. We started that process in early October and I received his diagnosis the day after he finished second grade. I know I’m not alone. I talk with other mothers who struggle to find a provider that takes their insurance or they wait too for months to get in. There’s simply not enough child mental health specialists available. Last year, we took Michael to the world-renowned Waisman Center in Madison to have them review his records and look for any red flags. We waited six months for that appointment and only got in for that appointment since I was on a cancellation list. They called Tuesday and asked if we could be there Wednesday. I said yes. His scheduled appointment was still three months away.

I’m not telling you all of this so you feel sorry for me. I just want people to better understand some of the challenges children on the autism spectrum and their parents face. Michael had a rough year in school. If we had an answer earlier for his anxiety, it could have been better. I had hoped it would have been figured out this summer – especially if the doctor prescribed new medications since they can take awhile before you see any results – and now he likely won’t be re-evaluated until after school starts. (That evaluation, by the way, takes between four and five hours.) Then we’ll need to wait several more weeks before we get results. My goal now is to have a better handle on Michael’s diagnosis before his IEP meeting in late November. This will be a crucial meeting since it will cover his first few months of high school (yikes).

As much as the school staff has been super supportive, I’m sure they’ll be less than thrilled to learn we didn’t learn anything new this summer and we’ll be back to where we ended seventh grade. I sometimes wonder how long their patience with Michael will last. 

But for right now, I’m trying to stay positive: school ends next week so that stressor will be gone from Michael’s life and since I had the foresight to fight for him to be covered under Wisconsin’s Katie Beckett program, all of his medical costs are covered. I continue to hope that more resources are put into children’s mental health and more young adults consider it as a career choice since having more professionals to help children like Michael will benefit the community as a whole.