Thursday, December 29, 2011

Sensory Processing with anxiety on top

Ever since our Infamy day our lives have changed. Something about life right now is not right. It is off balance and kinda out of sorts. But not just the balance. But The brain. Ty's brain to be exact. It is like in the last month I have gotten a child I hardly recognize. It is heart wrenching, frustrating and OH so sad.

We have known for awhile that Tyler has some sensory processing issues. For those who have spent any time with us and have tried to do something that involves talking toys or loud toys, you have watched the response and know it isn't "Normal" but we have easily adjusted to a quiet house hold and we don't always notice. There is no stroll down the toy isle for us. It just doesn't happen. He hears a talking toy and it is all over with. But what we haven't ever had was the meltdowns to the point of anxiety over taking him until he can get home.

In fact, he doesn't even want to go anywhere. Normally if I said I was going to the store he would be all over it. Now, he says " I will just stay here with Dad. You go all by yourself." If we tell him we are going home ( after we do finally get him out) and need to detour, we will literally be facing a new world war.

Case in point: We were in Logan and we were leaving a very busy, full house (sensory overload #1) and said we were going home. On the way down the canyon Gray's started crying (see above sensory issue). We opted to pull into a gas station to nurse. We stopped, we were not at home, screaming Tyler melting about wanting his home NOW. Gray's, a distract able nurser to start, wasn't having it and thought it was a game. We started down the freeway. Gray's cries harder, we pull over. This time enticing with drinks at a gas station. Meltdown central in the parking lot. The drive home was more "wash and repeat." At one point, Gray's was crying, Ty was covering his ears crying and I was in tears.( It's no wonder we need xanax in this house.)

So the sensory stuff isn't new. But the not being able to handle a change in routine is bizarre. The anxiety is intense.But the hardest is the stuttering. But it has changed. Meaning he now will not even get the first sounds out and stop and hide his eyes and say " oh dear" unless one of us can help him. It gets incredibly bad when he is over stimulated or if he is anxious. One of us will help him with the word he is looking for because we generally know based on what is going on around him. But it is sad and frustrating.

He has a one track mind. That part isn't new either but how intense it is is VERY new. Case #2: One day he got in his mind that he wanted to go to a big construction job. It took us a while to figure out what in the world he was talking about. Finally, it dawned on me he wanted to go to the discovery museum that has a big construction job. I got out a picture and and asked him what it was and he got excited and I had guess right. He wanted to go there. We couldn't go the first day he asked. He literally asked for 3 days. Finally we couldn't stand the 5 minute intervals that accompanied the asking so we took him. But it hasn't stopped since finding out he was going on a wish trip cruise either. Only the beach doesn't have a date so we find our selves answering a MILLION times a day that we aren't going today.

His one track mind includes the dentist too. But he can't go till after the 1st of the year and he literally asks about seeing the dentist at least 20 times an hour and all one right after the other. The sad part, I will get his appointment and he will be all excited about it and sensory problem #1 will come into play and 2 people will end up in tears.

. We have to take inventory of his body every night. No really. We count the bruises and new open sores so I know what to watch for as far as breakdown. He can't tell us he is wet or dirty ( another sensory issue.. he can't smell things that are foul. Like if we toot and it stinks up the house or poopy in the potty he doesn't say eww... and he doesn't gag or notice) so he doesn't notice if he is wet. Which is fine, but I have to remember to ask/change/ check more often than normal. But he slides down the stairs on his tummy. He has no extra fat on his body so his hip bone ( where a diaper sits!) is a raw open sore. He has basically rug burned a hole in his hip. He doesn't feel it, doesn't say a word. I put cream on it at night and he keeps doing it.

In the past month his feet have gotten huge blisters. Like fingertip ( of mom's) big on his big toes on both feet. One was a blood blister, one was a regular blister and one was a huge cut. Do you think he notices? Nope. Not at all. So we have kept shoes off as much as possible with socks on to avoid dirty feet.

He doesn't notice his hands are filthy. We do of course and wash them for him but again he could careless. He doesn't like his hair combed and never has so he looks like a dirty, disheveled little kid.

All of this, in a course of 4 weeks makes for the wall of reality to suck. Not only do I as the mom deal with nightly anxiety because of my fear of another seizure, but the daily meltdowns, stuttering, repeating and the works are my job to listen to and most importantly show him that he is important and help with the words, reassure that we ARE going to the beach and comfort during a meltdown. It makes me realize that it will never be normal for us. That the idea of possibly wanting more children is out the window. There is no way that another child could help the sensory over load that even a pretty good natured Grayson brings. Not to mention the demands on me as the mom ( nursing, crappy sleeping children etc) to bring it to the table with therapy and the works. It makes it very hard and very sad as we stand in the normal world and the special needs world.

What makes it even harder is the lack of support. Meaning, people say dumb things. I have no place to go to someone who is sitting in my position who says yes. its OK. In stead they say dumb things. Well intended dumb things. I don't have the support of going out on a date with Dallas, I don't have the support to have someone at the appointments that we go to because Dallas has to work. I don't have the support during surgery and shot times and I don't have the extra arms and attention to give Grayson. I have one friend I can go to that "gets" it, but I don't have a familial relationship to do so to. So it is lonely.

D doesn't have those things either and he suffers silently when I am emotionally spent. Grays suffers when I am spent. My goodness it is his food supply for Pete's sake. Tyler is busy and wants friends to play with. Wants to go to people's houses when he is bored, but doesn't have the social skills to call and ask. Honestly. It is a VERY lonely road.

Tomorrow I am going to post about Welcome to Holland and the REAL Holland.. You know, the being stuck in the airport not wanting to be in Holland that I recently ran across. And really, we could use a lot of brain prayers. That things are truly calm in there. That we can get this figured out. That we can sanely... make it through the storm.


Andrea, Mrs. said...

Oh! Nancy! I wish with all my heart I could help. I don't even know what to offer you. I am sorry there are people who are making things harder for you.

Joy said...

I wish I could make Tyler's life, and yours, easier. I don't know what else to do, but our family donated $300 to Shriner's hospital in Tyler's honor. We are thinking of you guys. -Joy (neither family nor stocker, just another mom)