High school has this mama freaked out

Just checked out the school that my son will attend. I must say, I don’t remember my high school being so HUGE.

I hate that I can’t make easy decisions about his classes and electives, especially PE. I guess a lot of my questions won’t really be addressed until May at a special meeting with his IEP team. I feel like I just can’t wait to get some answers.

Biggest worries: Fitting in and being teased.

Next biggest worries: Teachers who won’t get him and getting kicked out of honors math and science.

I need to get over it. I know. It’s hard.

For now, my now history-loving son will take regular English and World History. He loves history so I wanted to push honors, but I don’t want to overwhelm him.  My son and I decided, together, to push math and science. His dream is to become a rocket scientist. So honors he will do.

I’m torn about PE and an elective. The school has special programs to emphasis one sport. All levels of experience are accepted. He’d like to do soccer. He was OK as a defender, but his Asperger’s made this sport difficult. That’s the subject of another blog. So let’s just say I worry about the jocks. There’s also a junior ROTC option. Meeting the group, I didn’t feel it would be a great fit either. And I’m not crazy about the general PE option. Ugh!

We won’t do a language this first year. I don’t want him to feel too stressed, and by default, languages require a lot of participation. So will we do art? Plant sciences? Again, ugh!

Praying his new IEP team and his teachers will make the transition to high school smooth. I’m shooting for success, but can’t help worrying disaster is possible.

Road to discovery, part 4

Was he or wasn’t he on the spectrum? How could one test say yes and the other say no. Confusion struck.

Our developmental pediatrician suggested we ask his school to perform an ADOS (Autism Diagnostic Observation Schedule) evaluation to get closure. Essentially, he would be observed at school and given some one-on-one tasks and evaluated on how he reacts. 

Our doctor pointed out that our son was bright, and a diagnosis could open up more help from school. Still, we were scared. This would determine his condition, an obvious good thing. But how would we feel if he had autism? Would our lives change? Would his school be able to help him? Would he be high functioning enough to find his way in the world?

Our dreams as parents shattered the day we learned he had Asperger’s syndrome. I cried a little. I hurt knowing my son wouldn’t be “cured” of autism or ever truly fit in. He wouldn’t be the kid everyone liked. Parents would still judge us for having the “weird” kid.

Emotions gushed. Thought we were afraid to say aloud finally made their way out. My husband’s desire that he become a star athlete was now DOA. He suspected for sometime, but hoped we’d find some medical fix. Would he be able to go to college and find a job or live with us forever? And I worried most about long-lasting friendships and falling in love. Would he ever experience that unconditional love in a relationship? Would people always give up on him, as they do now?

We had to get over our self-pity and focus on his possibilities. It’s not about us. It’s what we can do for him. He is bright. He can learn more socially acceptable behavior. We needed to look at this diagnosis as the first step to helping him unlock his talents and hit his potential at school and, later, life.

It’s still scary and we worry, but we have hope.

Road to discovery, part 3

The school IEP (individual education plan) was the start to really helping our son. We also tried counseling, hoping that it would help with the behavior. We didn't see much of a change.


We finally got in to see a developmental specialist on our insurance plan. The waits can be very long -- six months or more isn't uncommon. We lucked out, getting in sooner than anticipated. (Ask to be put on the cancelation list and take it, even if the day/time is inconvenient.) Our son would be first diagnosed with ADHD-inattentive and anxiety “not otherwise specified.” It’s now the middle of third grade and he’s 10.

The developmental specialist didn’t immediately think Asperger’s – was this a good sign? Was he missing something? I fear the autism label. I know it. I’m happy we are finally getting answers.

School got better as soon as we opted for medication. We’d first treat his ADHD-inattentive and get him some additional accommodations on his IEP. I didn’t think his teacher felt the “fix” was fast enough. It was the best I could do for now.

Trying to brush aside that bad parent feelings that I felt every time we spoke, I kept trying to seek strategies from his teacher to help our son at home.  After a while, I also felt there had to be a better answer than anxiety NOS and ADHD-inattentive.

By summer, the doctor included “social concerns” and a need to rule out a communication disorder on the diagnostic impressions sheet. After a few months, I reluctantly asked the doctor if we should test for Asperger's syndrome. He agreed.

Now in fourth grade, we and his teachers were given to forms with a lot of behavioral questions. So many of my answers seemed to be sometimes. Could it be? Was I missing something? His grades were average, but homework remained frustrating. He talked in cartoon fantasies rather than "normal" talk. No one wanted to be his friend. Even the girls who seemed to like him, stopped saying “hi” in the school hallways. Can't like the strange boy or you'll get teased. We also noticed few of the boys dared talk to him at lunch. Only a few of the “nice boys” came to his 11^th birthday – maybe their parents felt sorry for us and our son. This isn’t good, and it’s not because mom and dad want their son to be well liked. This was different.

Our first evaluation came back as a no. Relief hit. Maybe he'd grow out of these odd behaviors and build normal friendships. Before I got too happy, we learned the second was a yes. 

Road to discovery, part 2

I knew about autism, but not Asperger’s syndrome. It didn't seem to me that our son had autism. He didn't have to have his day follow a certain routine; and he didn't have dramatic tantrums, not like I had seen in autistic kids. I could hug him. He looked me in the eye. He was protective and caring with his younger sister.

On the other hand, he did seem way obsessed with rocks and SpongeBob SquarePants, but every 8 year old we knew seemed crazy about the Nickelodeon show. Many of them also liked rocks, just maybe not as much as my son. His mannerisms and conversations did seem quirky, though, and those party invites had dropped off significantly.

I listened to my friend explain Asperger’s syndrome. All that I really heard was "high-functioning" autism and quirky. My mind drifted to his behaviors. 

He was super shy around other kids; eye contact wasn't so great with others. He’d sometimes hide when he saw someone from school at the store. Maybe something happened at school? He was very particular about clothes. Maybe he’s just starting early? His tone was flat and nasal. Maybe his tonsillectomy contributed to his speech problems? No, he couldn't have it. It had to be something else. Could I be in denial?

She suggested I learn more about the spectrum. I jotted down some names for developmental specialists who were respected for work with autistic kids. I worried about what I’d discover.

I looked at some web sites, and found he did seem to have some autism-spectrum traits. Still, I made excuses. Deep down I think that I didn’t really want that label then. My reaction was, will people think my kid is “Rainman”? Obviously he’s not.  

Road to discovery, part 1

Everything seemed normal to us in those baby and toddler years. The first bit of concern came only after moving. My son, 4 1/2 at the time, who never complained about me leaving him at daycare suddenly cried when I left. That separation anxiety waned. But as he hit preschool, I was warned that he seemed too immature for school. Teachers want well-behaved kids. I wanted to roll my eyes.

Kindergarten seemed generally fine, though the transition to a new school was a bit rough. By first grade, he fell behind in reading and more behavioral issues surfaced. We insisted that these problems were related to his speech delay and frustration with it. Things surely had to get better now that he received speech therapy. Besides, he seemed fine at home. Problems persisted, so his teacher encouraged us to have him repeat first grade. He needed time to develop reading skills otherwise school would become more frustrating. Our school boundaries changed. No one would know. We reluctantly said yes. I suspect that we really had no choice.

First grade the second time went generally well. He made friends, got invited to parties and received good grades. But in second grade, our son's teacher told us we needed to make our son focus more on school, behave better and make him participate in class. Ugh! It was obvious to her that he had ADHD (attention deficit hyperactive disorder) and medication could help. I sensed she thought that we were less than adequate parents for not doing something about it. I fumed inside. I hoped we would get some tips from her to help our son with homework, which took hours to complete. We didn't know how to cope.

Our pediatrician didn't want to medicate him without ruling out a learning disability. The signs are similar to ADHD, she said. We got him tested at school, where we learned he had two learning disabilities affecting his reading skills. We also finally saw a psychologist, hoping to rule out ADHD. He said our son had mild ADD (attention deficit disorder), or as they were now calling it ADHD-inattentive.

He was a daydreamer. I agree. His focus wasn’t ideal. But he wasn't hyper. If we could treat him, maybe his schoolwork would improve. We just weren't sure about going with medication, so we considered dietary changes. Less sugar and preservatives. More veggies and fruit. About that time, a friend suggested that I read up on Asperger's syndrome.

Getting diagnosed: We never thought he had autism

When our son was little, he was invited to parties. Kids seemed to like him. We had big dreams about how smart, kind and well liked he'd be.

Life slowly turned cruel. Problems at school developed, and those party invited trickled to nil. We were devastated and confused. What happened to our "champ"?

We would finally get an Asperger's syndrome diagnosis just as he turned 11. We felt terrible for not seeing it sooner, though our journey to figure out why he behaved and learned differently did begin at age 7 when school turned into a mess. I'll share more in another blog.

Why couldn't I see it? Why would I see it? He was my first born and everything he did was amazing. And when something seemed off, I called or visited my pediatrician who assured us OFTEN that he was fine.

We never noticed anything out of the ordinary about his behavior when he was little, though a preschool teacher did once say he was immature. She also told us that she believed immature boys should start Kindergarten at age six to give them time to catch up socially. In no way did we think this comment meant anything was developmentally wrong. Sure, he had a tantrum from time to time, but we'd seen much worse.

No one ever mentioned autism those early years. We didn't think it. Our only real concern was speech. Our pediatrician assured us that some kids were slower and he'd catch up.

Indeed, he seemed to develop normally with the exception of his speech. With walking, he was a bit behind, but still in the "normal" range. And yes, he was a bit shy compared to other boys. Sensitive. Nothing wrong with that, we told ourselves.

In hindsight, we were blind to many signs. But our reality never considered autism. We didn't know about Asperger's syndrome. I don't recall reading about it in parenting magazines or books. It wasn't the hot topic it seems to be today.

Lunch with a friend who was raising a severely autistic child changed everything. As I spoke of the problems my son was having at school and the judgments that I seemed to get from teachers, she stopped me. That's the first time I heard of Asperger's syndrome. It changed my life.

Getting permission to blog from my teen with Asperger's

My teen son has Asperger's syndrome. He doesn't like us talking about it. It's private. I get it.

At the same time, it's something I as a mom want to discuss with other parents to help promote sensitivity and understanding. Most people don't get it. If they say they do, they generally don't. It's frustrating.

My son is amazing. He's bright, funny, silly and obsessed with his favorite things. But most people only see the obsession and poor social skills. It frightens them. It saddens me.

Tonight, I again asked for permission to blog about my road traveled as a mom struggling to make others understand him and cope with my own issues. This time my son said OK. I just can't use his name. So I won't.

I know the struggle of raising a teen with Asperger's. It doesn't have to be a lonely or scary road.