I like things a certain way. I believe I have discussed this before. The same routines, jammies, my spices alphabetized, gluten free products in the pantry third shelf on the left, Cary Lynn's dresser drawers are even labeled so her attendant can put things back just so.
But when you have two special needs kids you often live in a snow globe that gets tipped upside down and shaken.
For Cary Lynn despite her complex diagnosis she is often times an easier kid to "fix". Apraxia, no biggie give her a communication device, check. Cerebral Palsy? We bring on the therapies, pain meds, make accommodations, get adaptive equipment. Check. Diabetes Inspidus? Extra liquids, measure urine output. Check. I could keep going but I don't think you want to know how we deal with constipation and if I listed the bazillion other things going on you would probably be ready to go to the next blog about the joys to knitting with organic sheep wool. (yes it does exist and yes I did read a post).
For everything I get thrown at me with Cary Lynn I get back up pretty quick. You see I can fix those things. If I can't make it all the way better I can come pretty darn close. I can make order out of medical chaos and all is right in her little world.
But what happens when you can't just fix everything? When you can't just slap an AFO on and call it a day?
Marvin is by far the kid most everyone looks at as the "most typical" kid in the family. Because you can't see abuse. You can't see prenatal drug exposure and shaken baby syndrome. They are invisible scars. But they are ever present in our daily lives.
Since I started home schooling Marvin I knew that he was behind. What I didn't know was how badly behind he was. Not in everything. I'm thankful that he has a natural curiosity about science and the world around him. That he's a cracker jack speller. But he kept getting passed along. So we go slowly day by day. We often repeat lessons because mastery takes time. Tests are read orally as he scrambles the order the words are in. Typing is encouraged alongside of writing. Breaks are frequent for sensory needs.
We also were able to increase his OT. He has a great person he sees weekly and she is working on lots of different things with Marvin. These things have helped. But he was still having panic attacks. His OT suggested counseling to help work on putting shattered pieces back together again.
I drug my feet. Surely he was getting better. I was doing all the right things wasn't I? But then Shannon left for an overnight and Marvin had a full blown all out anxiety attack. He was scared daddy wasn't coming back again. The abandonment, hurt and neglect came out all over again. It was at that point that I figured out that even with everything I was doing I just couldn't make this better. I hurt so bad for my son.
So after making many calls and talking to places we found a spot. It's a nice little office and they try to make you feel comfortable being there. We went for our first appointment last week. Marvin got out of the car and held my hand. I hadn't really gone into massive details about why we were there, just the lame parent spiel that we were going to go to a talking doctor that can help us with choices or some parental crap drivel. Marvin knew. He's no dummy. He looked at me and said "I'm sorry that I can't be like everyone else. I'm sorry I'm broken." Talk about ripping out my heart and stomping all over it. I just wanted to cry. And run home with my son. I looked at him and said, "Marvin I don't want you to be like everybody else. I love the Marvin I have. I wouldn't trade you for anyone else. But you feel scared and anxious so often that maybe talking to someone can help. Trust mama." Inside he crawled on my lap and I had one heck of a time filling out paperwork.
We were called back and introduced to our therapist. We went into a nice room with trees painted on the wall and toys. Marvin played with toys and met the rats that they keep as pets. He slowly warmed up and relaxed. The therapist and I talked for over an hour and even though I still wish I could wave a wand and fix it I knew when we left we had made the right choice.
So now weekly Marvin will get the support he is long overdue. He has a lot to work through. I grieve for the fact that he has so much on his plate and he's so little. He shouldn't have to have gone through this. But having people who care about my son and wanting to help him makes me feel better.
Putting the pieces back together won't happen overnight. This is a lifelong process. It will take time. Lots of it. It will also take patience and faith that we are going in the right direction and even though our choices for Marvin may not fit society norms at this time they are what Marvin needs to be uniquely Marvin. And I wouldn't trade that for anything.