Friday, August 26, 2011

the long awaited diagnosis

Today was jr's evaluation at the Child Development Center in a queens hospital. Whenever you think that it's something it always turns out to be the opposite. I got the news I've wanted to hear for the longest time and it turned out to be the news no parent wants to hear. Jr was diagnosed with PDD (Pervasive Developmental Disorder) and it falls under the umbrella of autism. I'm devastated. I just want to scream and cry but I was at my desk at my work so I just silently cried at my desk. We always knew there was something that they weren't catching but I just thought it was hyperactivity or ADHD never in a million years I'd expect this response and I'm still trying to digest it. I feel sad, angry, and question why my child, why us? why now? The doctor hasn't graded the evaluation yet but this is her diagnosis based on her observations and while I'm still trying to process all of this b/c I listened to him on the phone and when he said that I felt like I had been punched in the stomach so the sadness shifted into anger. Anger b/c these incompetents at the Board of Education first b/c they denied my son the services that he really needs with no real reason but I also think that besides them being incompetent and wanting to provide the bare minimum of services to kids and families I don't even think my child was properly evaluated and had he been properly evaluated perhaps he would be in a center based school setting well now that we have a name and a diagnosis it's a small relief so at least we know what the next step is he will need the school setting, transportation and additional therapy services than what he's getting now and I now have to look for a CPSE advocate b/c now is when the fight with the Board of Ed and the system is going to begin and I've got my boxing gloves ready for them. No one is going deny my child services just b/c no one wants to do their job anymore but wants to get paid or due to red tape and bureauracy. I tried contacting the service coordinator but just got a voice mail seems like no one picks up their cell phones anymore and I really hate speaking into voicemail I always mess up and have to delete and re record the msg. I can only imagine how many other families the Board of Ed and EI have gotten away with doing this to and it's ridiculous. It makes me realize that you have be to professional yet aggressive and persistent and we the only real advocates for your children are had we not pushed this issue my son probably wouldn't have gotten any additional evaluations. People who go into the professions that help children should do exactly that not nickel and dime people out of things they need like this idiot psychologist did to us now I can see why people rather not even deal with the city and state and go through their private insurance or sacrifice and pay out of pocket you get better services and treated better. I have the woman of Queens EI to thank for this evaluation and hope that things will progress from here. It's an immense amount of stress to be under especially when everything else seems to be going wrong like him moving out. You would think this a time when we should be closer than ever but we are not. I felt the effects of my stress today when my stomach started acting up that's like my body is telling it's just too many things at once. As this week comes to a close I feel disappointed with all that is happening it seems like when it rains it pours and I don't know if I can take on anything else at this point. We are also going to have change our parenting strategies since I've read a little on the topic and now kind of notice little behaviors that were a sign but I was blind to b/c we're not professionals but certain tactics don't work with kids on the spectrum but they always have to have consistency. They say life is a journey but this is one journey I'd rather not take but have to for the well being of my son.

No comments:

Post a Comment