This Coming Tuesday (May 19th) is Caden's visit To Strong memorial Hospital to hopefully FINALLY get some sort of diagnosis written on paper. Over the years we have been told a million different theories and we still can't get any one to write anything down. Why you ask? Could it be that once there is something in writing Caden's world will just have gotten so much brighter?? SO many more services, funding, medical insurance will be available to him. I can't understand why doctor's don't want what is best for our children. We've had one doctor tell us Caden was Autistic (PDD-NOS) Then we got test results back and to be able to put that in writing, caden would have needed to score and 8 - he got a 7 (figures) then we went to another doctor (same clinic) who after looking at the test scores, told us Caden was shy. Um.. SHY??? Have you met my son???? he is furtest thing from shy there ever was. That same doctor told us to immediately stop using sign language if we ever wanted him to talk. Well it's been over 1 year and Caden still is Mostly nonverbal and using a million signs to communicate. Why would you take a child's only means of communication away from him? I won't get on that subject. So here we are, 10 LONG months of waiting.... We made this appointment even before he was center based. Which brings me to my next fear, Long before Gateway Came along, Caden was in the worst regression ever. Since school began last October, he has shown GREAT progress, as with anything in life, you progress right??? Well I can't help but wonder if I would have better chances of then diagnosing him if we didn't center base him. THEN however, I can't imagine how far he would slipped away from us. Kinda like dammed if you do, dammed if you don't right??My child, for the most part was NORMAL, in all senses of the word (what really is normal??) He talked, sat up early, walked at 1 blah, blah blah. Why at 15 months did he no longer talk anymore? He no longer knew ANY words. He could no longer communicate with us. He became afraid of other children and still is. Tell me what part of Normal that is?? Have you ever had a child standing with you one day and lose them mentally/emotionally? Watch them slip by you? Go from a normal life, to needing speech 3 times a week (now 5) and then OT 1 time a week (now 3) and special education at 2 years old 2 times a week (now all day for 5 hours 5 days a week) and you then want to tell me there is nothing wrong with my child??? Please come back and tell me that when you see your child in a regression. Please, we'll talk then. IN the mean time, tell me how normal it is, that my child can't deal with any transitions, for the most part can not talk?, Can't stand to interact with other children? Has NO fear of ANYTHING??? and feel no pain??, He is smart enough to dismantle everyday household items and put them back together just from memory?, Why does he need to vacuum and push heavy items ALL day long?, Why does he run everywhere you take him?, Why is he sensitive to noise and light (his class is as light as it is at dusk), why??? Please don't tell me it's the age, since he will have been this age then for almost 3 years.
I can't tell you how nervous I am about Tuesday. So much so I am not sleeping at night, I wake with an upset stomach most days and it doesn't end. Please keep us in your thoughts on Tuesday.
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2 comments:
It's about MONEY, and the ones that stretch the truth and take advantage that ruin it for everyone, pure and simple. My thinking is that the doctors are pressured by the government not to write it down because these services are so costly. It's probably worse with the current economic state and tight budgets. It's sad, and it's not right. It don't help that insurance companies don't want to cover these treatments because autism is considered life long and there are no quick easy answers, and people like Michael Savage saying that autism is some kind of fad. I could say plenty about this subject but it's late so I will spare you. I will elaborate more later.
The sad truth is that some doctors just don't have enough experience or insight to realize things. (And I'm sure the money aspect comes into play as well.) I remember the first 6 months of Dominic's life when he would scream continuously, sleep in 12 minute increments between 45 min to 2 hour bouts of screaming, was bleeding from every crease in his skin, and pulling out handfuls of his own hair with a thick crust attached. We spent 2-3 days per week at the pediatrician. One doctor told me "he just has poor sleep habits." If I hadn't been so exhausted, I would have strangled her. It is so infuriating when you know that there is something wrong with your child. There is SOMETHING WRONG, but the doctors don't see it, or can't figure out what it is or how to fix it.
It comes down to us as parents where we have to advocate for our children and fight with doctors, schools, etc. to do what's best for them and to keep them safe. I just wish the "systems" wouldn't make it so hard.
*hugs*
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