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Tuesday, July 13, 2010

At the end of the day.....

UUUGH...... it is 10:10 pm and I am just now sitting down. Where do I begin? Well working backwords seems like as good a place as any. Danny has been on his new acid reflux med for 6 days now and after day 2 we noticed what appeared to be a slight side effect of coughing. Well it as now progressed and every night he goes into these coughing bouts that cause him to throw up and and sweat profusely and have trouble breathing and he says make him dizzy and make his head hurt. Tonight is the worst I have seen it. So tomorrow, no med and I am calling the doctor. There has to be something different we can try. The problem is with our insurance litle is covered and we have to take wat we can get because we are paying out of pocket fr therapy, and I barely have enough money to buy groceries and am looking at a shut off notice for the power on my desk right now. God! I remember when I was a child I was in such a hurry to grow up, and now I think why didn't anyone tell me this is what it was going to be like. I surely would have taken full advantage of my childhood had I known! :)
All jokes aside, I love my children, and while life is often complicated with my son's needs taking center stage, I cherish what I have and am hankful for every moment. I even tear up as I write these words. I think there are some things in life that can only be achieved with struggle, and appriciation and understanding for family and love are one of those things.
So, besides tonight's delimna what have I done this week? Well... chased down doctors and resources and insurance coverage questions, all in my spare time. We have finally been referred to Doernbechers Childrens Hospital at OHSU here in Portland. I am thankful because they have a bounty of resources available that we are in need of and I can not be any happier that we are heading in this direction, after being turned away from so many places because of our insurance and not having the money to pay for the care out of pocket.
And, when we get to Doernbechers I expect it to get worse than now with Danny. He will begin to recieve services for area's we have not began to address with him medically, and I know this will be a battle, but I am willing to try what I can. As his therapist said today, she can not imagine seeing him anymore disregulated. He is an extreme case, and we just have to keep trying. I hope once at the Childrens Hospital they will be able to give me a more diffinative answer to what is going on with him as well. Right now I have 3 different diagnosis's with his therapist telling me that there is something else there that is not being addressed, so sometimes I do not even know what to think.
The school diagnosed him as autism spectrum disorder. The pediatrician as unspecified nuerological disorder, and the therapist as sensory processing disorder, plus she says he needs to be evaluated again once at OHSU to find the missing diagnosis. I just want to help him. Some days at moments I feel like I am and some days I feel like we are not. I imagine many parents feel like this with their special needs children.
Today in therapy we addressed his feqar of the grocery store through imaginative story play. We came up with the plan to create an emeergency backpack for him. It will have all of his coping tools in it.  Such as his earphones for noise, sunglasses for lights, sweater for temperature sensativity, chew bar for his need to chew in order to help regulate himself, snack for when e is hungry because he misreads hungry as extremem pain, sensory ball for anxiety. Those kinds of things. And since I had planned on getting a leash backpack for him this will actually be a good time for this. The leash backpack is hopefully my idea to help him when we are out and he tries to run away, and because he often cries and screams that me holding his hand is hurting and painful to him, I imagine if I eliminate that pressure touch of my hand then it will help him as well. And our goal is to not support avoiding public areas of anxiety bcause then he will refuse to leave the house, so gradual acceptance instead by taking him to the grocery store only for a few minutes, like to buy a gallon of milk or one item. In and out. Exposure without over exposure, only what he can handle. And letting him help pay and those kinds of "jobs" as well. I hope this lends to a posative experience for the most part.
The other new thing we will begin next is music therapy. Some special headphones and music that is made with a machine that makes the music waves corelate with the brain waves and can help organize, calm and regulate his behavior better, possably. The other adverse is that it will irritate and overstimulate because he is not ready and go into one of his shut down modes. So... we will see what happenes. I think he may like it though, he seemed to enjoy it in therapy today and he always likes music. His therapist said that the effect is instant one way or the other.
And I managed to get my garage cleaned in the middle of the afternoon as well. I filled Danny's wagon with sand and gave him the hose and he was busy for 2 hours in that mess! But it allowed me to get the garage all cleaned out and carpet layed in there. I am turning it into a therapy room for him. So first the clean out, then I have ordered a trampoline and a multi colored curvy balance beam and a teeter totter and the special huge life size building blocks and a gymnastic pad and I have a tent and I am going to make a crash pad and then get a slide and hammock in there and  step ladder and then he can slide down to the crash pad or use the step ladder to jump off of safely onto the crash pad instead of throwing himself off his bunk bed onto the floor below. We will hang soft lights from the ceiling and I am thinking of putting in a table and chairs for activity crafts time as well and taking up oragomy if he will and then we can hang all of our creations from the ceiling. This will allow him to take advantage of his repeptative knot tying in a healthy way. I also want to get big body pillows in there so we can create a quite space to read and be mellow in those few days that he will allow it. This all is a process that will take tie, especially on my limited budget, but a little at a time is my plan. Eventually it will be a refuge he will really enjoy I think. And his sister too. Being a normal sibling in this situation is hard. I was in her shoes my entire childhood and I often felt neglected by my mother. So I am trying to find ways to incorporate things to allow her to be a part of it all. And what child will not be happy to be a part of a therapy room, even without special needs.
The other thing that he is enjoying is the garden. Helping water and looking for ripe produce is proving good for him. This is a plus! So, while the days are hard. Sometimes filled full of melt downs with a child who can scream with the most intense anger and other times clutching you as you rock him while he poors out this screaming cry of fear and pain. While the days often consist of me having to watch his every move to make sure he is not terrorizing his sister or paiting the bathroom purple or flushing things down the toilet or chewing up the toothpaste tube or throwing up in random places like under the bed or stealing shoe laces to compulsively tie knots durring nap time or hiding in the closet to cut paper into the tiniest pieces my vacuum can not conquer...  while these days are my daily routine which often leave me exhausted by the time I turn on my computer are 10pm and attempt to do my 16 credits worth of college homework before having to be up at 6am. I can say those minutes that are so very normal and precious that I wait to see, those minutes like at night when he is willing to hug me so very tight and offer up the tiniest kiss, and those minutes like today when I broke down in therapy explaining the week to his therapist and could not hold back my tears of frustration and concern, and he reaches up and hold my face in his hands and touches my eyes and asks why I am sad, I wait for the moments of normalcy that I know are locked away inside of my baby, being held hostage by something inside the mind somewhere, and I wait........
At the end of the day, that is what I realize I have done, aside from everyting else that I thought I did, I realize that I waited yet again. And as many a mother of a child like mine will do, I will try and exhaust any and everything that might help him, and I will wait as long as it takes.

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