Uncategorized

An Update

Recently B visited his developmental pediatrician for his annual checkup with Dr. F.

You see, it’s been about 2 years since we received B’s official diagnosis. Looking back on that initial post I can see how far we have come.

Dr. F. initially recommended ABA Therapy. We tried that for a bit but it wasn’t for us. Instead, we went the route of a play therapist. I generally feel like we have a lot under control at home, though some days are more difficult than others, but all of the social needs can be met very well through play therapy. Just last week we switched therapists because his old one moved out of state. So far I think the new one is going to fit, but it will take B some time to warm up to her. The last one leaving was quite hard on him, because they formed a great connection.

I’ve been in contact with the University of Central Florida’s Center for Autism Related Disabilities (UCF CARD), which is a wonderful free service offered by UCF. They sent someone to observe in B’s classroom, and then they offered recommendations to us. They also offer free classes around town for ASD children. They are a plethora of information within the community! The guy who observed B in his class gave a detailed report, mentioning how smart he was but he was hyper and although he struggled socially with his peers at times, he was able to work through it by clearly using some strategies he’d been taught; communicating, removing himself from the situation, and asking for help. He provided recommendations to his teacher and me, most of which we were already doing. Still, it’s good to have that resource in our back pockets should we need anything.

I’m so grateful to his Occupational Therapist who also took on the role of working on social skills alongside his play therapist. Thanks to his IEP, he also gets social skills at school. I think all of this combined has helped him, as evident from what the UCF CARD coordinator was able to witness.

As we waited in the office for his annual developmental appointment with Dr. F. this time, B immediately noticed that she’d rearranged the room we were in from the last time we were there the previous year. (I’m not sure if the fact that we were placed in the same office for our visit was intentional or not, but it’s good it worked out that way.) He talked to me about the old placement of the furniture and that he was looking forward to the doctor finally coming in so that he could ask her why she moved things around.

It only took a few minutes for Dr. F. to come into the room. Rather than saying hello, B immediately questioned her (That’s my boy!! HAHA!). He asked her why she moved the table from the right side to the left side, what happened to the large carpet, and why the dinosaurs were in the spot that the toy cars used to be in. She answered all of his questions thoughtfully, explaining that she had to clean things out and that she naturally rearranges the room at times. She apologized that it wasn’t the way he remembered it.

When she started asking him questions about school, he came over to me, sat on the chair in my lap, and started whispering multiplication facts in my ear.

This meant he was uncomfortable answering her questions and was escaping with numbers. He loves math and anything to do with numbers because they do provide a sense of comfort for him. His therapist once explained to me that numbers reduce his anxiety levels.

He does get uncomfortable talking about himself. Dr. F. understood this way about him and to speak his language and make him feel comfortable, she started asking him math facts. He was eager to answer these, much more so than talking about himself.

After a few minutes of this he warmed up to her slightly and he opened up a bit about school.

I went on to tell her how well he did in Kindergarten this year, and how he was actually invited to a birthday party from class, and I even teared up telling her about it. She was able to see how far he’s come and rejoiced with me in his overall progress.

The headbanging in his sleep continues, along with the humming. (I hear it because I’m a night owl and when I’m up working late in my office, such as writing this blog post, I can hear him slamming his head against his mattress and humming a sort of chanting sound along with it.)

Thanks to years of Occupational Therapy, we still build obstacle courses in our house (B likes them so much that he will even do them for fun).

Stuttering continues to come and go, usually based on his anxiety levels.

Numbers are a part of his daily life. He’s always curious about the distance, miles, and timing of things. He even likes to take guesses on how many feet, miles, or kilometers something is. He’s also obsessed with timers and even sets his own Alexa timers in the house for various activities. He constantly looks at how much time is left on shows and movies he’s watching, always wants to know how many items must be picked out at the grocery store (and will call you out on it if you pick up more/less of those items), and enjoys finding number patterns in anything he can.

Just today he asked me if I could help him calculate the number of minutes he’s been alive in his 6.5 years. He guessed “300 hundred thousand, 3 thousand 6 minutes (300,003,006) “. The actual number is 3,504,960 minutes. We had fun doing the math together. And he was a little frustrated that he was so off!

At the end of our visit, Dr. F. said that she was very impressed with his progress, at this point the annual visits are not necessary unless we feel we need them. Of course, he’s still ASD (Asperger’s), because that never goes away, but because he’s doing so well and everything is managed, then it’s not necessary to continue seeing her annually unless there’s a problem that arises. She said to continue doing what we are doing and to also continue to keep an eye on his seizure activity, as this could be the age when it all spikes. She said there’s a chance we will return to see her around 3rd grade, as this is when certain behaviors in kids like him, even those doing well, will begin to spike.

I appreciated the “heads up”.

We had a visit with his neurologist for an in-house EEG because this has also become an annual gig. This was the EEG that initially didn’t show any seizure activity, but even at that time, the doctor decided to do a 24-hour one anyway. The 24 hour EEG is where they discovered he had seizure activity. This in-house EEG showed no activity, just like last time. That’s good though because it could mean nothing has worsened! In another year or so we will need to return to that 24 hour EEG to find out if the activity has increased. By age 9 we were told it would be a lifelong condition most likely, and at that point, we would probably need to seek seizure medication.

I continue to be impressed with B, and how he overcomes some of his obstacles. Current world events have made everything a little more difficult, but distance learning truly went well for our little man, and if it was something I could do full time, I’d homeschool him in a heartbeat. I fell in love with the amount of fun we had during distance learning and how I was able to truly catch a glimpse of where his beautiful mind is at daily. He started asking historical questions about World War I, which prompted me to write a whole mini-unit for him on a kids version of World War I. This is something I know never would’ve been touched on in Kindergarten. It also allowed me to work with him on his Reading, a subject he hates in school. In the span of a few weeks, he went from reading on a mid kindergarten level to a late 1st-grade level. I truly attribute this to simple one-on-one instruction. I think that’s an environment he would thrive in. (Then again, wouldn’t most kids?)

His least favorite part about distance learning was the whole class ZOOM sessions. He dreaded them. He said it was too loud and there was too much going on. I think it was overstimulating for him. I know that returning to a distance learning platform would not be good for him in some ways (whole class zoom sessions) and they would not help him to work on his social skills, however, he would get so much out of them when it came to exploring things that are in his head. I guess there are pros and cons to both (pandemic aside).

These days we spend our summer days hanging out together, swimming, learning, and playing games. Sadly, there isn’t any Disney fun happening this summer. I could just have never imagined last summer what the world would be like only a year from then. I’m truly trying my best to take every moment and seize it. I know I’ll never get these moments back with him.

He’s not attending Taekwondo anymore because since we’ve moved the distance just became too much. He was taking acting and improv classes before the pandemic but now that’s all been on hold, and we haven’t taken part in their online zoom classes because, well, he hasn’t been a fan of those from his classroom. Now he’s doing guitar lessons once a week, after asking us if he could do a musical instrument. He’s honestly taken to it very well and seems to be a natural. He impresses me with how quickly he picks things up. Of course, this does make it more difficult when something is hard for him because he wants to give up easily and not try. This is something we are constantly working through.

I don’t know what the next school year will bring. I can’t believe I’ll have a 1st grader! He had such an amazing Kindergarten year thanks to a beautiful and patient teacher who will forever go down as a saint in my book! I can only hope that our 1st-grade teacher is just as amazing, and will be able to understand him as much as our Kindergarten teacher did.

It’s all in God’s hands, though.

This kid….he just makes me smile at the very thought of him, and laugh at the comments he makes, even when he’s not trying to be funny. If you ever want honesty about anything, ask him! A few days ago I talked to him about how I’ve always wanted to be a Disney princess. He quickly informed me that I was “too old”. When I started to laugh he didn’t understand why I was laughing. “I’m serious. You’re too old!”, he said. I tried to explain to him that’s exactly why I was laughing. His honesty.

He never did understand.

And things like that…that’s exactly what makes him so funny. So endearing.

So-

So…

Blake!

How is it possible that he’ll be 7 in a few months?

AGGGHHH!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s