Peter did a slightly less than half day at camp yesterday and had no behavioral issues(hooray!). Originally, the plan had been to do another half day today, but my heart was telling me to end on a good note. So we did.
As hard as this week has been with him, I feel like God has been opening my eyes to view Peter in a different way...in a more complete way. I've barely started to wrap my head around it yet, but I do want to share what I'm thinking so far.(So please bear with me if it's somewhat discombobulated!)
Other than the obvious reason that, as a mom, I would be upset and discouraged that my child has bitten or slapped another child or his aide (insert painful groan!)........I am struggling with the "why" to Peter's behaviors lately? Besides absorbing this week as a failure as a mother to consider something that I thought Peter would find "fun" to be so completely overwhelming to him, I find myself questioning my connection to him and his feelings and his needs.
Over the course of this difficult week, I have spent some time asking God to help me understand why Peter is acting this way and what to do to help make it better. Peter can be such a contradiction....too much structure and he rebels. Too little structure and he can't seem to regulate himself. I think that's why summer camp always tended to be a more positive experience....it had some structure but the demands were fairly low and there was a lot of leeway to be flexible and spend extra time doing favorite activities(read: pool time!) if he was struggling with some of the other activities.
This week, nothing worked. Peter was just overwhelmed. Even today, Jeff told me that as they were heading to the pool a group of campers was walking towards them. Peter's grasp on Jeff's arm tightened and he became visibly stressed. Peter actually stopped and turned his back to the group until they passed. That made me so sad....he's never done that before.
Yesterday, Jay's uncle sent him a link to a video about an autistic teen who, until age 11, had no verbal communication. Then, one day when she was 11, Carly started typing. And now, she shares so much of how she is feeling and what she is thinking....all through typing. The way she feels and thinks was trapped inside of her for 11 years. Everyone thought she was simply autistic and mildly mentally retarded...but she was so much more.
How much of who Peter truly is....is simply trapped inside of him? For most of his life we have worked so hard at keeping him safe(not an easy task for the "bolter" he was for many years), and trying to regulate his diet so he would actually sleep, and give him structure so he would not just walk around aimlessly rarely connecting with anything all day long.
For so many years, his need of constant supervision(and I mean constant!!!) and his lack of sleep, and his constant movement just completely exhausted us and burned us out. When Peter was home...we had to be "on" all.the.time. No matter what I was doing, one ear was listening to where he was walking. Two minutes of quiet sent us looking to see where he was....always poised to deal with a possible escape.
Going outside in the yard meant dozens of promptings to "stay in the yard" and you could NEVER take your eye off of him. Trips out in public meant Peter strapped in the carriage, or, once he outgrew it, holding someones hand at.all.times...no exceptions.
It's hard to enjoy someone that requires the supervision of a toddler at their most difficult developmental stage when that stage lasts for YEARS! Peter exhausts us.
I'm sorry if that sounds terrible.
Despite the fact that he was so difficult, we almost always try to include him in what we're doing as a family. Our friends and family are very accepting of Peter....but I know we overwhelm people just in the sheer size of our family and topped off with a child that just never stops moving or getting into things.
Over the past two years, Peter has gotten a little easier. He generally stays in the yard without reminders. He mostly sleeps through the night as long as he hasn't gotten into things he shouldn't be eating. (I know for some kids diet doesn't make a difference, but it makes a big difference for Peter!) We don't have to have keyed locks on all the windows so Peter doesn't escape.(Yeah, that was a great phase!insert eye roll here) It doesn't take me weeks to "get over" the burnout when Peter is home for a vacation week.
All positive things. But this week has brought his needs as an independent, growing and changing person more into focus. Seeing the video of Carly and the interview with her parents has got Jay and me thinking...are we missing something?
We've spent so long just trying to survive each day that maybe we let our exhaustion, and our disappointment, and sadness, and grief over Peter's diagnosis and all his challenges keep us from seeing who Peter really is. And, more importantly, maybe we forgot to hold onto hope for who he can become.
How do you know someone who can't let you in?
How do you keep trying to break through to something that may or may not be there?
And, more importantly, have I given up thinking there is more to Peter than what his disability shows me on the surface?
Like I said before, I don't have it figured out at all. But maybe there is a greater good that will come out of this rough week. It sometimes seems like the best changes in life come in the wake of difficult moments.
Sometimes I'm so busy just trudging forward trying to get through daily life, I forget to look up and see that God opened another path for me. He uses those challenging moments to get me to look around at where I am and what I'm doing. Though I don't appreciate it at the time, the new path always ends up being better than the one I'm on.
It just takes me a while to acclimate to the change in scenery!