Look what poster is up at my son’s IBI.
I haven’t posted much this week. Was a bit busier than usual but honestly, it’s been an emotional week…one where I’m still wrestling with logic vs emotions, trying to see the positive side of things. We received the report from my son’s assessments when he started IBI therapy at this location (after we moved last summer).
Because of staffing issues, the meeting for the report was 5 months after the assessments were done. These assessments are done every 6 months so you would think I would be ready for them each time, but at the end of the day, I’m not. I go into a bit of an emotional turmoil each and every time. See, these assessments compare my wonderful and amazing son to neurotypical kids of the same age.
I made the choice a long time ago to focus on the positive side of things…what my son can do, the humour of it all, and recognize how hard he works to do the things that come easily to other kids: sitting down for longer than 30 seconds, finally being potty trained at 7 years old, knowing what to do at the park, sleeping through the night, and the biggest of all…finally learning how and when to talk! He overcomes so much to be able to do these things that it’s a party around here whenever he masters a new task!
On the tough days, when Autism seems to take over, I try to stay on the logical side of my brain…looking at how I can support his IBI programming, manage his surroundings, minimize external over-stimulus, etc. So, when I get reminded with these assessments that on average, he’s about 5 years developmentally behind from other children his age, and despite having a twin sister who doesn’t have an ASD diagnosis, it’s really hard to manage my own emotions around this reality. I have a hard time managing the emotions vs the logic of it.
All I can say is that it’s a good thing I have a counseling appointment booked for next week!
He was home from IBI last Friday because of being sick and, while we were home, I was puttering around. Finally decided to put up one of the word wall decals I recently bought and, as I was sticking it to the wall, I realized he was behind me…READING EVERY WORD out loud!! It’s in script!! So proud!
I asked if I could take his now empty glass of water away and, without prompting, he clearly said “thank you”. So proud!
Each day this week, he has returned from IBI, having learnt something new. First it was our address, then his birthday and today, it was his school name. When prompted, he stops moving, looks the person who asked the question square in the eyes, and loudly answers the questions.
Last year, I coached my son for weeks before Halloween. Walking him through how to walk up a sidewalk, up the stairs to the front door, knock on the door, say “Trick or Treat”, hold his bag out, say “Thank you”, turn around, walk back down the stairs, walk along the sidewalk….and repeat. This year, someone around us mentioned the word Halloween a few weeks ago, and my son immediately responded by saying “Trick or Treat”. I was pleasantly surprised.
Halloween day was really busy this year! Between my man and I, we have 3 kids, which meant 3 different Halloween parades at 3 different times, on opposite ends of town. My son‘s IBI therapy‘s Halloween parade around their buildings, going Trick or Treating to other departments in the area. When we got there, was surprised to see him in a matching Crayon costume to his therapists. His Spiderman costume hadn’t felt “right” for him that day so they improvised. I was so proud to watch him interact with his therapists, his friends in IBI, other people in the departments (especially the ones who were dressed up too!). He went between me and his therapist, and whenever he was holding his therapist’s hand, he would say “Mommy” and make sure I was right nearby.
That night, we went out with our party of 6 kids and 3 grownups. My son went up to each house while I watched from the sidewalk, would say “Trick or Treat” and/or “Thank you” the majority of times, completely unprompted. He waited his turn when he was there with other kids. He even sometimes checked out the bowl of candy to see if there were other things he preferred but never just took other candy unless the grownups told him it was ok. Some houses had fog machines and the grownups there thought he was the cutest little Crayon while he played with the fog.
He and I were slower than the rest of our party but I couldn’t have been more proud! My man would let us catch up with the rest of the party sometimes, only to find me with tears in my eyes…each time telling him that they were happy tears. My son was doing it! Autism took a backseat and let my son just be a kid, participating with all the other kids.
My daughter was her usual happy, cheerful self. She was independent, straight-forward, polite and thankful to each and every house. I was so proud to watch her have a great time with the rest of our party, showing off her Batgirl costume that my man had sewn for her…if I had made it for her, she would have been covered in safety pins and/or iron-on tape! Thank goodness my man can sew!
I threw out my kids‘ old backpacks and my son’s winter boots…and I feel horrible about it. Despite the holes in the backpacks (there was barely any bottom left) and my son’s winter boots didn’t do up anymore, I still feel like a bad mom.
I grew up in a family where we believed “help thy neighbour”. It’s probably part of why I became a fundraiser (when I worked outside the home). How better to help thy neighbour than raising funds and/or items for those who need them?
I’m also raising my kids with the same philosophy. Whenever they aren’t using something anymore and/or have outgrown something, we give them to friends we know as hand-me-downs or to a charity. (It really helps me logistically that there’s a Goodwill literally right beside my son’s IBI therapy so I don’t need to make an extra stop, but I digress…)
But the backpacks and boots were so far gone that I just couldn’t donate them or give them away. Putting them in the garbage bag this week and taking them to the dump felt so…wrong. I have thrown away stained clothing before and broken toys, and not felt bad about it but this was a gut-wrenching experience, and my reaction surprised me. I had to stop myself from taking them back out before throwing the bag into the dumpster at the dump.
Even today, 2 days later, I still feel bad about it. I had bought the boots at a second hand store and I got the backpacks off of a “Recycling Kindness” group on Facebook (where all items posted are free, in the efforts of keeping them out of the landfill) so the three items were well-used and had blessed at least two families for the purposes they had been designed for. I also bought replacement backpacks at Goodwill before I threw out the old ones. I’m not going to replace my son’s winter boots until closer to next winter as his feet are growing by the second right now.
I still feel bad though. : (
This week, I’m thankful for:
- my son and daughter
- receiving paperwork that let me know I’m divorced!
- my son’s IBI therapy provider
- our local library
What are you thankful for this week?
A year ago, my son was considered to be “non-verbal”. Six months ago (around our move from Big City, Ontario to Small Town, Ontario, and especially him starting IBI), he started using words on a more regular basis, but it was only about 20 words, and it was still intermittent. Fast forward to two nights ago…
He regularly wakes up for 2 – 4 hours overnight for what I call his “Autism party” where he plays constantly for that time period. Since I’ve taken everything out of his room except for his bed, bedding, and his one stuffed animal (Mikey Mouse) that he takes everywhere, it amazes me that he can spend so long playing. In the morning, I am encountered by all the bedding taken off his bed and his mattress will be folded in half, or leaning up against a wall, in whatever shape he has decided to create. At first, I was amazed that he could do this, now it’s just “normal”.
Two nights ago, his “Autism party” consisted of him talking NON-STOP. His favourite thing to say right now is “Oops. Almost. Try Again”, which is a statement from his favourite game on TVOKids.com. After an hour or so of him saying this (and laughing his head off each time he said it), while moving everything around in his room, and me telling him to lie down and go back to sleep, I finally lost it and told him “stop talking, be quiet and go to sleep!”. Of course this didn’t work, but I chuckled a few minutes later when I realized the irony that I’ve gone from desperately WANTING to hear him talk, and now I was telling him to stop talking in such a short time period.
For the record, I want my little man to keep talking, more and more every day so I can learn from him…BUT, I would really appreciate if he would NOT do it during the wee hours of the morning.