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.

Keeping the faith isn't always easy

Church is supposed to be that place where everyone feels welcome and you should feel at peace and refuge. But during the past few years as my son has gotten older, I sometimes feel a bit of dread every Sunday morning. It’s not necessarily my fellow parishioners that cause that dread but myself. That’s because Michael is nearly 14 and almost as tall as I am doesn’t have the best church behavior. It’s not like he’s driving cars along the pews like he did when he was 4 or crying like he did as a baby, but in a place where people are usually quiet and reverent, he’s just being Michael. That means he leans against me at times when the priest is talking, he rocks back and forth during the readings and he always disappears for a good 10 minutes to the bathroom.

Michael pays attention and understands what’s going on at church, but it’s so hard for him to keep his body relatively still for an hour. Yes, there is some movement, but not much!

While sitting in church, I wonder what the people behind us or next to us must be thinking. Autism is an invisible disability. You can’t usually tell someone is autistic just by looking at them. For a while, we tried sitting near the back of church so fewer people would notice us, but Michael likes to sit near the front. I know I shouldn’t be thinking about what other people may be thinking while I’m at church, but I can’t help it. I just don’t want people to think poorly of him (or let's be honest -- my mothering skills).

Now that his sister serves at mass and my husband ushers, it’s sometimes just the two of us in the pew and I feel the spotlight is on us – and him – more. I just sometimes wish we were invisible, but I know too that it’s important for Michael to keep going out in the community – both for us and other people so they can what people with autism are really like.

Are We There Yet?

Most students count down the end of the school year, but this year I'm right with them. I cannot wait for this year to come to an end. Seventh grade for Michael has been one long journey. It doesn't help that every year after spring break, he loses interest in school. This year, I'm not sure if it's hormones or something else going on, but it's been worse than ever.

Michael "forgets" he has tests and quizzes and when he does remember, his effort is poor. The same goes for homework. For the first time ever, he likely won't have a GPA above a 3.0. Last quarter, he had a 3.5 -- his best. I don't care much about grades; I just want him to give it his best effort and that's not happening now. I have to constantly go online and see if the teachers posted homework assignment due dates and information about upcoming tests and quizzes. I then need to sit with him and study. Ask him to study something on his own and he'll look at a couple of worksheets for about three minutes and call it done.
Since Michael told me that fellow students were throwing stuff at him during art class and that another student called him "dumb," it's like we've been on a roller coaster. He tells me he hates school and doesn't want to go back, but when I bring up alternatives, such as an online school, Michael changes course and says it's not that bad. 
Last week, I finally got Michael in to see a new psychiatrist who specializes in kids on the spectrum. I told him our story while my soon-to-be 14-year-old held a teddy bear and played with a bunch of fidget toys -- I can't believe some people have the gall at times to believe there's "nothing wrong with him" because he looks normal. Michael didn't really talk much except when the doctor asked him what he was worried about. "Sleep. I have a hard time sleeping," he said. He didn't want to talk about being anxious, being bullied, self-harming or any of the other things I had brought up to the doctor. The doctor decided he wants Michael to be re-evaluated this summer to see if along with the autism and anxiety if he has any other mental health issues.
In the meantime, I try to remind myself to breathe and keep repeating that school will be over soon. School will be over soon.

When Your Fears Come True

Bullying. As a parent, you hear about it all the time in the news and from other people sharing their stories about their child. When I was in school, it wasn't called bullying, but rather being picked on -- unless things got physical. I'll admit that a group of boys occasionally picked on me from about third to eighth grade calling me names like "Creature" and other stupid comments. I'm not sure why they did it; probably because they knew I would cry, which I did.

Today, bullying is taken more seriously especially when it's cited as a possible reason a teen decides to take a gun to school and take his rage out on his classmates or why so many teens attempt or commit suicide. Students start hearing about bullying and that's important to report it in elementary school. It's something they're definitely aware of.
As a parent of a child with special needs, my bullying radar as a parent is often at full alert. Fears about Michael being picked on is one reason we moved him from a public to a private school. Despite those fears, his classmates never picked on him for being different. I felt relieved.
Then, it happened. I'm going to preface the story I'm about to tell you with, "I know it's hard to believe, but it's true." In mid-April, Michael called me from school (a usual occurrence) saying that his ear hurt really bad. That's highly unusual so I went in. He told me and the office staff it felt like something was in his ear. I looked in and didn't see anything. I suspected an ear ache based on the area he pointed to. I took him home and started calling around to get him seen by a doctor while he lay quietly on the couch. I finally got an appointment. About five minutes before we were to leave, Michael comes into my office and says, "My ear doesn't hurt anymore." I turned around puzzled and he held out his hand, which held a small piece of an eraser. "When I was laying down, this fell out."
An eraser in your ear? Now Michael loves to chew on things and will put just about anything in his mouth, but he's never placed anything in his ear. "How did that get in there?" I asked.
"Well, kids were throwing eraser bits at me in art class and I guess one got in," he said. Wait a minute. Kids throw stuff at you in art class? He nodded and then said it had been going on for awhile. Sometimes it was small paper balls while other times it was tiny eraser bits. He didn't want to say anything about it.
Now the cat was out of the bag. I took him back to school and we saw the school official in charge of students and told him the story. He looked at Michael and basically said he could not believe it. How could someone throw a tiny piece of eraser and have it land in your ear? I told him that Michael does not put stuff in his ear and the aide that usually works with him agreed. And besides that, what about throwing erasers and paper in general? Can we look at that? He nodded and said he would talk to the art teacher.
A couple days later, I checked in and he said he talked to the art teacher about it. I then asked Michael if things had changed. Nope. So I went back to the school official and said things were still not going well. He said he would talk to the kids Michael had named. Since Michael has problems remembering names, he wasn't sure of all the kids' names.
The next day in social studies, one of the eraser throwers called Michael stupid and a dummy who needed to go to resource every day. Michael was so upset when he got into the car that he started hitting himself and was completely out of control. 
That night, I sent an email to the principal, vice principal, school counselor and his homeroom teacher. The next morning, the counselor called and said she would "handle" the situation. Since then, I've dealt with her on a number of issues related to Michael's situation. I can't say if the situation has completely improved, but the counselor did have Michael moved away from the kids who were throwing stuff at him.
What got me and keeps me up at night is....would Michael have said anything if the eraser piece hadn't got stuck in his ear? With all the talk in schools about bullying, why are students slow to report it? Why are school officials slow to react? Everyday after school, I now give Michael the third degree and ask him if people threw anything at him, said anything mean to him or stole his basketball at recess (another fact that came out in the discussion of the eraser incident) I think he grows tired of it, but I don't care. I will stay vigilant. 
Special needs students like Michael are more likely than their fellow students to fall victim to bullying. Schools need to pay closer attention to when special needs students speak up and understand they might not have or be able to provide all the information that a "normal" student may.

Constantly Being on High Alert Exhausting

As a parent of a child with autism, I feel like I'm constantly on high alert. While there are a lot of resources and blogs out there about younger kids, my son is entering his teen years and I have more questions (and angst) than ever before. I decided to start a blog on my experiences as a way to express my feelings and if I'm able to help someone else going through the same thing or help someone without an autistic child better understand what I go through daily, then all the better.
I rarely get a break from the parenting realm. Earlier this year, I went on a business trip to Madison (that's the cool photo from above) for a dairy conference; I'm a freelance writer and the dairy industry is one area I focus on. It was such a huge relief to not worry about Michael's daily medication, if he used deodorant, brushed his teeth, his homework -- well you get the picture. Since my husband was very busy with work (he's an accountant), my mom came to help with the kids for three days and two nights. I think that experience gave her a little more perspective on what I deal with daily.
I get so tired sometimes, but I keep telling myself I need to keep moving forward and can't give up. Michael is counting on me.

It Can Be Tough for Teens and Tweens With Anxiety

As soon as I figured out how to assign ringtones to numbers on my then-new phone a couple of years ago, I immediately assigned the siren tone to school. I wanted to make sure I didn’t miss it. Unfortunately, it goes off way too often. But the reason isn’t one you might expect – it’s not a teacher or staff member calling to say my son is in trouble or that he needs to stay after to finish up homework (the school has a policy of making students stay after if homework assignments aren’t complete). It’s Michael calling, saying his head or stomach hurts and he wants to come home.

When the calls first started coming two years ago, I would immediately get in my car and rush over to school to get him, thinking he was sick. But after two or three times of him feeling completely “fine” after an hour coming home, I started to look at other options. It turns out it was anxiety. When Michael was diagnosed with high-functioning autism, the psychiatrist also gave him an anxiety diagnosis, but I honestly didn’t think much of it. He didn’t seem nervous. And that’s the problem with anxiety – the person may look and seem absolutely fine, but on the inside, they are a mess. In Michael’s case, he would get so nervous about math class, that it led him to have stomachaches, which then led to the calls home. Another problem with anxiety, is that you never know when it will strike. At times when I thought he would be nervous – such as when he was Joseph in the school Christmas play last year – he wasn’t. Instead, it can just a regular Tuesday where it looks like everything is going ok and he’s thrown for a loop. Worse yet, he can’t always identify what is making his anxious – although his default answer is usually math.

Michael’s not alone. Anxiety disorders are the most common mental health disorder in teens, with studies showing that up to 20 percent of all teens and 30 percent of all teen girls struggle with anxiety. Anxiety disorders include not only the generalized anxiety disorder that Michael deals with but also panic disorder, obsessive-compulsive disorder and social anxiety.

To cope with his anxiety, we’ve pursued a number of options. He’s on a low-dose anti-depressant to help “take the edge off” as his doctor says. Michael also sees a therapist to help him self-identify when he’s feeling anxious and some tips on how to deal with it – such as deep breathing, writing in a journal, etc. He also has a de-stressor bag that he just started taking with him that is full of different items to help him calm down. As part of his IEP, Michael can also visit a special room in the school where he can bounce on a trampoline or just sit in the quiet and relax. I’ve also gone to school and talked to him, rubbed his back and he’s then decided he was ok to head back to class.

But even all of that doesn’t always work. Last Friday, the siren tone went off again and it was Michael, saying his head was “spinning” and he wanted to come home. I told him to lie down on the little bed in the room off the office and try some deep breathing and then call me again in 10 minutes. Less than 10 minutes later, the phone rang and he was asking again to come home. So I got in the car and headed over to school. He kept on apologizing and saying he was sorry and that this time, he really was sick. But within about two hours, Michael was back to his normal self, asking to play video games (I have a standing policy of not letting him have his iPad on days when he comes home sick from school.)

Days like last Friday seem to come in streaks. We can go for a month or so without any problem and then have two or three within a two week period. Since I’m a freelance writer, I set my own schedule so I’m able to run over and pick him as needed  (this is the standing reason I give my husband whenever he starts making noise about me possibly finding a job with a more reliable income).

I’m hoping that as he gets older and continues with the cognitive therapy that Michael will develop the coping skills he needs to deal with his anxiety. Yes, his autism isn’t the easiest thing in the world to deal with, but he has set behaviors and definite likes and dislikes that we’ve gotten used to over the years. His anxiety is what throws our family for loops since it has not only led to him missing school, but also intensifies some of his autistic behaviors, such as rocking back and forth or flapping his arms. Anxiety is really that silent disability.