ASD: Awesome Spectrum Disorder

Today marks my 4 year WordPress Anniversary! I started this blog nearly 5 years ago on blogspot, then switched over to Wodpress.

I thought an anniversary warranted a post. Naturally, I want to give an update on what’s going on with our little guy because it’s what’s relevant in our lives.

It’s been a rollercoaster ride since school began. He hasn’t transitioned very well to his new school, which also happens to be the one I work at.  Most mornings are quite rough dropping him off, but I am thankful that he has really great teachers who help him, understand him, and communicate with me.

One thing he does not do well with are changes in schedules. So much so that I had to create a schedule for him as he hangs out in my classroom before I walk him to his classroom in the mornings. I feel like most kids can just play and keep themselves busy in the mornings before school, but it was clear within a few weeks in that Blake needed a comprehensive schedule to follow for the 20-30 minutes he’s in my classroom in the morning.  We brought Legos and toys from home for him to play with, but it was all a little too freestyle for him. A few colleagues in my hallway also have children, so I asked if we could create a schedule of rotations of kids to play with, so that Blake knew what the morning would look like for each day of the week. This worked well for a bit, but as teachers we have to be flexible because sometimes we have meetings in the mornings and our personal kids have to go elsewhere. Sometimes we’re a little late to work. Sometimes life just happens. This morning the schedule didn’t happen in the manner it was supposed to because the friend who he was supposed to go play with didn’t arrive at school in time, and he didn’t take it well. Blake could not understand why his friend wasn’t yet at school. He wanted me to call them and ask where they were. He threw himself on the floor crying saying he had no friends. He ran out of my classroom and sat by their door, staring down the hall waiting for them. I had to go get him and when he came back into my classroom he sobbed uncontrollably, and spent the majority of the time staring out of my classroom window looking for them, continuing to ask why they weren’t there.  I tried to use it as a teachable moment, that things do not always go the way we want them to, but it’s hard to speak with someone when they’re in such an emotional state.

At 8:10 it was time for me to walk him to his classroom and he complained the whole way that he hated school and he wanted to know if I was walking him to someone’s classroom to play since he didn’t get to play with his friend, because he still couldn’t grasp the inflexibility in the schedule and that that moment had passed and we were now moving on from it.

This is so typical of him, and any kid with ASD, to be crippled by a change of events.

When I walked him into his classroom he went ballistic as soon as we walked through the door. At least that’s how I would describe it. Maybe I’m being overly dramatic.  Blake was screaming and flailing his arms. Another teacher came over and tried to gently restrain him and he hit her. My child HIT a teacher. My sweet, kind, smart, boy. I was in shock. He started screaming, “Leave me alone! Let me go!” I never thought I would be working at a school and having that child that everyone is staring at, then looking back at me, with my school badge on, thinking that’s a teacher’s kid?  I didn’t know what to do. I thought staying there was making it worse so I told him I loved him, choked back some tears, and walked out. As a teacher I know firsthand that sometimes you just want to yell at the parents “get out, you’re marking it worse!”. So I tried to be objective about the situation and let Blake know that the classroom teachers were in control of him when he’s in that setting, not me.

I saw the looks on people’s faces. Eye rolls. People moving themselves and their children two steps back to get away from the crazy-child.

I never thought I would be working at a school and having that child that everyone is staring at, then looking back at me, with my school badge on, thinking that’s a teacher’s kid? 

I wanted to assure them, “this is not my child! He’s not this kid! He’s so much more!”
But, it was hard keeping myself together watching him and several adults, as other staff members walked in to drop their kids off and offered the teacher help with Blake.

I bowed out, sauntered back to my classroom.

I couldn’t worry about what other parents were thinking in that room. It is what it is. If only we lived in a less judgmental world where people didn’t judge your whole life, child, and parenting style based on a 1 minute snapshot.

None of them know what happened that morning.

None of them know how he struggles.

None of them know how we spend the whole ride to school every morning talking about every possible social situation he may come into contact with that day in class, on the playground, and how to navigate it.

None of them know his heart.

It sure is difficult to carry on with your day at work when you leave your child in that state of mind.

This is not the first time his routine has been off in the morning in my room and he’s not had a good transition to the classroom.  When I walked him to class this morning I fully expected that to be the precursor to his day. I hoped it wasn’t going to be, but I knew. And it was. He didn’t have a good day. It set the tone, as usual.

It’s funny because I know these situations are going to happen. I know there’s going to be schedule changes, and I try to do my best to prepare him.

Okay, Blake, if we get to mommy’s classroom and Tommy isn’t able to play, what can we do? Usually he or I would give some ideas such as drawing, Legos, playing cars, kicking a beachball around, but today was a wake up call that I need a more detailed schedule for him.

He needs constant repetition of concepts and scenarios, and sometimes our role-playing works, and sometimes it doesn’t. Am I saying the right things to him? Am I doing any good?

He has an afternoon schedule in my classroom after I pick him up from his classroom. This has been in place for quite some time.

• He works on ABC Mouse for 10 minutes. I check his lunchbox to see that he’s eaten all his food and if he does then he gets 2 cookies to eat while he works on ABC Mouse.
• He gets to watch 1 episode of his favorite show.
• We go home.

This schedule works really well for him.

As soon as I pick him up from class EVERY DAY, without fail, he repeats the schedule to me just to be sure we are on track.

Mommy, I’ll do ABC Mouse for 10 minutes, get 2 cookies, then watch something, right? 

I joke with him that he says ALL of this without first acknowledging me, or giving me a hug or kiss.

I say it jokingly, but I really wish he’d run to my arms because he missed me, not to repeat a schedule.

Some days I pack all my things up to leave work as soon as I grab him from his room, and he gets upset. You’d think NOT going back to my classroom would be something most kids would enjoy, but this disruption sends him off again. Lately, I’ve just implemented the same schedule at home (Duh, why didn’t I think of that sooner?), and it’s been working out okay, though he prefers my classroom.

The best day that he had at school this week was the day of our school Fun Run. His class ran first thing in the morning, and he ran over 20 laps WITHOUT STOPPING! I was able to watch him for the majority of it, and it was impressive. He needs that physical outlet and I had a hunch it was going to set him up for a great day, and his teachers confirmed. Most kids on the spectrum need more physical activity than most. Blake is sensory seeking so anything where he’s physically doing something is always a plus.

Do I need to get him up early every morning and go jog around the neighborhood?

He remains in speech therapy for the stuttering, but he’s doing really well again! He just need a bit of a refresher. The speech therapist has already joked with me that our time may be coming to a close again since he’s making such improvements, but that she’ll see us again in 4-6 months. True story!
Apparently he stuttered quite a bit yesterday at school and his afternoon teacher admitted to me that one of the girls was making fun of him and asked him why he was talking funny (he stuttered, then went into his baby talk voice, which is what he uses when he’s trying to compensate). The teacher said he got his feelings hurt and was crying. I don’t blame the other kid. They’re only 4, after all, so they don’t know any better, and to her, he was speaking strangely so she questioned it. The teacher did explain things and said the girl apologized.

Tomorrow my husband and I are meeting with Blake’s counselor without him, to talk about his progress with her and what we can do to support him at home.

I want so badly to understand all of this, because sometimes I feel that if only I could understand and just catch a glimpse into his brain and mindset, it will help me to help Blake more. Understanding the quirks, and why he relies so much on schedules and why veering from those schedules causes him so much anxiety and confusion. I don’t need to understand it, I just want to.

I guess that’s how my brain works.

But I remind myself it’s just him. And we all have parts that make us us.

I may not understand it, but I accept it all, and I 100% accept Blake to be who he is. My perfectly funny and smart boy.

I don’t ever want someone to catch a glimpse of him in the classroom throwing a tantrum and hitting a teacher and think that captures the essence of him, because it couldn’t be farther from the truth.

It’s heartbreaking to think of the judgments people make about your own child.

Autism is not a puzzle, nor a disease. Autism is a challenge but certainly not a devastating one.Autism is about having a pure heart and being very sensitive… It is about finding a way to survive in an overwhelming, confusing world… It is about developing differently, in a different pace and with different leaps. Autistic beings develop and bloom if their spirits, talents and self-esteem are not destroyed by bullies, prejudice, ‘doggie-training’, and being forced to be ‘normal’. Trisha Van Berkel, Odd One Out Blog

On the spectrum or not, we all know how it feels to be judged, or to judge others.

It is our job as his parents to guide him into the realities of the world. People are going to question him, test him, and judge him but it’s all about how he responds to it. He’s going to want to give up more easily than others, but our family motto is “Never Give Up” and he’s slowly learning that through hard work, and pushing through confidence barriers that he already experiences at such a young age. He continues to thrive and do amazing things!

On November 14th he has an appointment with the doctor for his formal evaluation for ASD (Asperger’s). We continue to try to seek services at school, at least for social skills and emotional support for him during the school day. No word on any of that yet.

One day at a time.

Meanwhile, I’m sure he will continue to correct me when I wrongly call a rhombus a square.

Yes, that happened today.

Oh, how I do love this kid! Every bit of his Awesome Spectrum Disorder.