My kiddos experienced Courageous Kids Camp this week! They aren’t exactly traditional campers so we are grateful for the chance to expose our boys to camp-like activities in a camp-like environment!
Things have been rough here lately. Looking back I probably won’t even remember why. I’m far overdue a post and have so very much to share but it will just have to wait.
This is my outlet and I enjoy it. Life has suddenly become a bit too overwhelming to enjoy. Moments of joy seem like I’m robbing Peter to pay Paul. Two special needs kiddos is no joke. One isn’t either.
I swore up and down that good parents give it 💯. It doesn’t matter what it looks like, it’s still 💯. Somewhere along the line, it seems I started giving more than 💯. Taking from me and giving to them.
Now we are all at a deficit.
It will get better. I won’t remember this week. Life will go on. But today, this week, this month, Ugh. M
Confession: Cub takes at least 12 medications a day.
Why? Because that’s what he needs to be successful.
Why is it a confession and not a statement? Judgement.
I was refilling Cubs medication dispensers tonight when I said to Tiger, “I think people would judge us if they knew how many pills we give our child each day.” He replied “you are right. Maybe even report us.” And then I said “I keep it a secret because I’m embarrassed. I feel like it presents as poor parenting and I want to protect him and us from judgement.”
This is what it’s like to be an autism parent. While our child is navigating an uncharted path in the world, we are second guessing everything, ourselves included. We are constantly walking a tightrope of empowering and protecting our children.
I don’t want people to see his explosive meltdowns. “I keep it a secret because I feel like it presents as poor parenting and I want to protect him and us from judgement.”
I don’t want people to notice his tics (mouth noises, tongue turning, etc). “I keep it a secret because I feel like it presents as poor parenting and I want to protect him and us from judgement.”
I don’t want people to see his intervention tools (headphones, fidget tools, weighted vest, pull-ups, etc.). “I keep it a secret because I feel like it presents as poor parenting and I want to protect him and us from judgement.”
I keep this blog anonymous. “I keep it a secret because I want to protect him and us from judgement.”
I started this blog because I needed this blog 7 years ago. I needed someone who would be real, honest, raw, and forthcoming. So here it is: Cub’s medications
We took Cub and Roar to our family farm for Easter. It was a wonderful weekend.
Roar struggles with safety and impulse control on the farm. Any farm is dangerous if you aren’t aware and cautious around equipment, livestock, tools, etc. Roar is NEVER aware or cautious. NEVER. He’s up for anything. We have to watch him like a hawk!
This trip, I brought his compression weighted vest. When we got to the farm, I put it on him and we went for a walk. He walked the whole time (.25 mile)- no running and no unexpected detours!
Funny thing is we’ve had this vest for six years and this is the second time it’s been worn. It was Cub’s but he hated it and didnt respond to it. We ended up going with a weighted non-compression for him. This vest has been patiently waiting to be “really useful.” (Sorry for the Thomas the Tank Engine pun)
So now we are taking it to and from school daily so everyone can experience it’s magical powers.
Roar is in early intervention for speech and functional delays. He talks sometimes but mostly he’s quiet. His receptive language isn’t all that great either. We recently saw a neurologist, endocrinologist, and had genetic testing. Roar is also very low percentile for height. He’s been that way since in utero. No one knows why. Genetic testing came back normal, as have diabetes, celiac, thyroid, etc.
So Roar goes to Occupational therapy, Speech therapy, feeding therapy, and sees an early interventionist each once a week. Exhausting. His progress is notable but not exciting. This schedule is identical to our oldest (Cub). So, second verse same as the first. The lyrics will be different because Roar is a “hold my beer/challenge accepted” kinda guy while Cub was always a tiny adult.
Usually, I’m more positive but today I felt defeated. Tomorrow is a new day!
Cub’s school has a run fundraiser every year. Last year he got overwhelmed after four laps and sat on the pavement with his hands over his ears.
This year, I went too! My mom came as well. We took turns walking the laps with him. He got to 11!
We ran into some issues because Cub, never one to miss a science opportunity, found a crack in the pavement which cued up an entire science lesson on how water expands when it freezes and moves anything in its way.
He also taught his Sheba about typhoons, and land to ocean ratios.
Tonight Cub asked me how old his brain was because he feels it doesn’t match his body.
Today he met a 6-year-old friend with the cognitive capacity of a one-year-old. Rather than thinking any less of the other child he began self-reflection. Without prompting, He quickly shared with me that he isn’t the same age as his body either.
After he asked, I shared his cognitive age with him (based on IQ testing). His reply was that he and (friend) are the same because they don’t fit their body.
I spend so much time explaining to adults how the autism spectrum works- they are all different but their challenges are similar- but Cub gets it.
I wish I could claim some credit for his insight but he’s lightyears beyond me.