For the past two weeks Jackson has attended Camp Communicate. It’s an intensive speech therapy camp for children with Childhood Apraxia of Speech. I saved every penny from my photography sessions this year to cover the cost of camp, because it isn’t covered by insurance. I had such high hopes for the last two weeks.
As a special needs mama I should know by now it’s best not to let my expectations get too high.
I wanted Jackson to have a fun two weeks, make progress with his speech and have a “camp” experience like so many neurotypical children get to have in the summer. I never dreamed these two weeks would be some of the most challenging we’ve had in months.
His anxiety was through the roof. The group sessions were too much for him to handle. The noise, people in his space, transitions. You name it, it was a challenge. He just couldn’t cope. My happy kid became aggressive and out of sorts.
It was so hard to watch (and deal with) that I completely lost my shit with God.
Why the hell does everything have to be so hard? Why can’t he just have one normal childhood experience? I am so angry. When are you going to cut us some slack?
I found myself screaming those words at God from the privacy of my car as I went to pick Jackson up from camp last week.
When I walked out of camp last Friday I didn’t want to bring Jackson back this week. I didn’t care about the thousands of dollars that would be lost. I just didn’t want to do the hard thing. I was emotionally and physically drained. I had cried every last tear. And I certainly didn’t want to take another walk of shame.
But special needs parents aren’t quitters (because what would that teach our kids?)
Special needs parents adapt.
Special needs parenting is all about adapting to what your child needs. Sometimes we adapt day to day. Sometimes we adapt hour to hour. Sometimes we adapt minute to minute.
So that’s what we did – we adapted.
Jackson’s speech therapist and I decided I would bring Jackson to camp later each day so that he could receive his two individual therapy sessions. Once he finished his sessions, I asked him if he wanted to join the big group for the closing song. Some days he said yes, some days he said no. I honored his choice each time.
Adapting meant staying with Jackson at camp instead of reading a book or running errands.
Adapting meant allowing Jackson to choose not to stand up and sing the goodbye song.
Adapting meant respecting Jackson’s feelings and honoring his choices.
Adapting meant a much smoother second week of camp.
Camp Communicate didn’t go how I had planned, but nothing in our world of Apraxia, Dyspraxia, ADHD and Sensory Processing Disorder has.
I’m still guilty of wanting my kid to fit in a box. Boy would it be a lot easier, but it’s not going to happen. No matter how hard I try to force him to.
But I don’t want to force him.
When I try to force him to act like a typical kid it’s out of my own selfishness and people-pleasing tendencies. I still worry too much what other people think.
Instead of trying to make Jackson fit a certain mold, I want to do the hard work of helping Jackson find his niche. I want to be flexible enough to adapt (even if people don’t agree with the adaptations we make for him). I want to celebrate his differences and strengths. I want to help him when he struggles.
Camp Communicate reminded me of that.