August 10, 2010

Today, as often the case, was a very trying 'little man' day. He had an appointment with a new psychologist and honestly I don't think he even looked at her. It was mostly to discuss the upcoming school year, the challenges and any new news with him. My son has been to several doctors, therapists, and most recently a neurophycologist. I have finally found a team of doctors that are working together to meet his needs and get him the help that we've hunted for. It has been a long road but sadly still walking it as meds alone are not a miracle cure.

The official diagnosis was on the fence for him as he shows so many 'classic autism' signs that the Dr's weren't sure. Because he has made progress in speech they decided to go with the lesser of the two and if we need to change it later to get him additional services they will. PDD-NOS and ADHD are the monsters we are dealing with. "Pervasive Developmental Disorder-Not otherwise specified" and "Attention Deficit Hyperactivity Disorder". He's had more hours of testing than I can believe and all seem to say the same thing. I have a VERY intelligent little man with the social skills a few years behind. He prefers to be alone but his competitive nature draws him to sports (and makes for a great therapy). He loves building and patterns and has remarkable dexterity. Everything is black and white in his world.  If you tell them that it's raining cats and dogs he's going to look up for those to come down. He requires an A, B, C direction and does best on a schedule. When he feels those of us visiting HIS world aren't communicating properly he will get angry and sometimes violent. I get kicked, hit, things thrown at and more. Yelling does nothing so not worth the breath and spanking would only provoke.Often the only way to fix it is to hold him safe until he's moved through it. He doesn't make a lot of eye contact, not fond of loud anything, and is known to shut down completely. The Dr isn't sure he'll make it through the first grade in a 'regular' school setting so we'll re-evaluate in a month and see if a special needs autism program would be best.

Today I was given a line that, although crude, it made sense. I'm not one to advertise to others what we deal with but when those moments come up, times when he's acting oddly and I can't stop it and others look to me with that uncomfortable feeling, that's when I give them a brief update with hopes they'll understand. Unfortunately I usually get "he doesn't look sick" or "seems normal to me". I try not to get mad but inside I want to thank they for their stupidity and ask which 7-11 they obtained their PhD. Well as I was thanking the Dr for helping and understanding I mentioned this and she replied with "Can you see HIV?" Doesn't mean the person isn't sick or suffering but you can't see all illnesses...

Ah and now the vent...
We left the Dr's office and he wanted something from the vending machine. I explained that if he was hungry we'd go get him real food but it wasn't working. First he refused to leave the building, then as we walked to the car he threw things at me (rocks, mulch, etc). When we got to the car he refused to get in. I had my three year old with me who seems to be mimicking his behavior so after getting her into the car I had to hold his legs together and then the arms and try and gently get him in. All, of course, surrounded by buildings of people who were probably judging my bad parenting skills. I got him almost in and closed the door enough to hear the click and started to drive away as he attempted to kick out my window. Just as he calmed down I started to cry, just driving in the rain and crying because how do you explain this life to anyone who isn't living it and who really wants to admit it?!

I've been crying on and off for about three hours now just wondering how to cope. I can't afford to talk to any therapist as his sometimes twice a month visits are $50 each. The additional classes he needs are not covered by insurance and run about $40/week per hour. So that leads me here and here I let it go. His older sister took him to football tonight while I stayed home with the little one.... crying, breathing, writing.
mysplitpersonality mysplitpersonality
36-40, F
5 Responses Aug 10, 2010

You are a good Mother-- I have two special needs kids- their meltdowns are common yet random. Our school system doesn't understand her disability. I'm a single Mom with no help- well emotional support, I do have.<br />
So I understand your situation- your kids are blessed to have you!

I went through that with my son.. It often made me wonder if all the doctors ans social workers had once been inside and somehow escaped. As my son became older he seemed to learn a lot more than I. My concern had always been of his future.. a future.. perhaps without me to help him.<br />
His life and mine became a lot calmer when there was no more school.. to more teachers, no more "health aids", no more social workers.. all these people who get paid because they know best.<br />
<br />
My son is now 52. We... that is HE has a very few of these people who know best in his life.. these work for social security. Now, in contrast, I think back to the other "helpers" who we had to deal with. At least they required some higher schooling to do what they do.. not so at social security.<br />
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My son, in his patient way has learned to find what is, perhaps, the one person in that office with some amount of compassion. At times, it takes a great deal of patience to listen to my sons explanations, but he gets his point across.<br />
.<br />
Though his case file says he will never get beyond where is is today. He is asked to "prove" his disability every two years. This he has done.. on his own, for the past 6 years. He understands much better than is sister that he needs to live his life.. as if I were already gone.<br />
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Hang in there and let the kid do what he can on his own.. he may surprise you.. mine sure did.<br />
<br />
................................................................... Lou

Thanks guys... Tulik you made me laugh. Maybe I'll bring you to next appoointment. Just a moment by moment challange. *heavy sigh*

sounds like you are an AWESOME mom to me! Keep your chin up. You are doing great - no matter how you feel! :)

let me cut through the minutia i am no doctor but i don't need to be i watch the news hear the specials on autism and i can tell you YOUR SON HAS AUTISM!<br />
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and he is acting typically for a kid with autism <br />
<br />
when you are out with your son- at least until he can read you should wear a t-shirt that says "my son has autism give me a f*cking break