Autism and the Fraternity of Hope

When you learn your child has autism, the first thing you scream in your head is "HELP!!"  Who can you talk to?  who will understand your challenges? who will understand your children?  I've gone through alot of that in the last 2 years since Jamie's official diagnosis.

First it was the grandparents who didn't want to believe anything was wrong with their grandchild.  Then it was the school system that found it inconvenient for your child to cause them trouble.  Then it's the public in general who look at you like you're a terrible parent when your child has a meltdown in public.  Then it's the other children who look at your child in the midst of trauma and ask "what's wrong with him?"

Where we live, there are plenty of children with autism, but we're left to flounder.  We get no support from the schools, the school system, the county...  I was fortunate enough to run across a local autism support group that I thank God for every day.  They help me understand, they know my struggles, they understand my child.  The events that we've gone to as a family have been some of the best we've had, as every one there had children with autism.  If my child yipped or yelled, no one cared, no one stared.  If he had a fit, they ignored it.  To just sit down and not have to keep your eye on your child every moment in fear that something will happen, you don't know how good that feels.

It's still a very limited group.

Then I found Google +.  Found the autism circles, autism parents, autism advocates.  You don't know how comforting it is to just get a post that you're not screwing things up, it's "normal."  To read about other children's big "firsts" they're experiencing, and being proud of them.  Being screwed by the school system and powerless to do anything, and having people offer me suggestions.

And today, I met a woman that I had met on G+ that I will be forever thankful to for her help and support.  I have a big IEP meeting coming up.  One where it has to be completely re-written because it was written wrong, the county isn't following the IEP, they're attitude is "oh well."  And this person drove 3 hours to come meet with my husband and I today, to explain things, to give us an insight as to what they're doing, to understand our concerns for Jamie.  And next week, she's driving down here again to go to the IEP meeting with us.  To be our/Jamie's advocate.  To help Jamie get the services he needs and is entitled to, that the county keeps telling us he's not.  We're going to have someone on our side for once who has the knowledge to call them out, who knows if what they're saying is correct or not, who's only focus is to make sure Jamie gets what he needs.

This woman isn't getting paid to help us/Jamie although I would do it in a heartbeat if I had the money to do it.  She's doing it because she has children on the spectrum, she knows how schools/counties operate, she knows their stalling tactics, and she wants to help a little boy she's never met get everything he needs to succeed in life.

I know there are people who think differently, there always are in groups.  But I've found the Autism community to be a Fraternity of Hope for me.  I see us all cheering on each other's kids, offering suggestions, offering encouragement, feeling other parent's outrage.  I would have gone crazy without the people I have had the opportunity to meet on G+ in the autism community.

So, as a mom who most-times feels alone in the fight with the world for my baby.  Thank you my G+ family. Thank you for your support, your self-lessness, and your kindness.  I hope one day I can contribute as much to you all as you've done for me.

Facing my fears

Ever since we got Jamie's diagnosis, I've done everything I could to make his life normal. Maybe normal isn't the word. We've learned what works and doesn't work with him. We know his trigger points, we try to make his life easier.

School is so hard for him. School really brought out the Aspergers. We try to give him a soft place to fall when he comes home.

We had an IEP meeting at the school yesterday. I was concerned with what would happen with Jamie next year. I wanted them to identify a teacher for him now, one who could handle Jamie, let them see Jamie in the classroom setting...see what works and doesn't.

What I got... was what I never wanted to hear. He's not ready for first grade. He isn't emotionally able to handle kindergarten. He doesn't have the social skills or the ability to function in a much more rigid setting like first grade. They want him to spend a majority of his time in the special ed class, and go to first grade for certain areas, like special classes and math.

They tried to say that it would be easier for Jamie, he'd have more one to one interaction (because there are only 6 kids in the class), they could teach him to his level in reading, keep him calm, let him go to some classes with the other kids his age, but limit the stressors of being there all day.

While this sounds like the best thing for Jamie. I'm devastated. I didn't want Jamie in the "special" class. He's so smart, I don't want him to flounder. And I know that part of it is what they did to "special" kids when I was growing up.... they stuck them in a room, taught to the lowest level, let them flounder, they were ostracized by the "normal" kids. Hell, last year in pre-K, when they put Iain in with the special kids because he needed OT and speech therapy, he was in there with kids who ate like dogs and wore diapers. He floundered...he didn't do anything... I don't want that to happen with Jamie. He's too smart.

I'm sure I offended the teachers with my questions. But I don't care. I DO want what's best for him. And I guess right now it's my fear of the perception, fear of the unknown, fear of how he will be educated... I'm scared for him.

And I guess it's also that I can't lie to myself anymore. I can't think our lives are going to be normal with just small deviations. That there really is problems with Jamie. problems I can't fix. Problems that will only continue. That he'll never be "normal."

I don't want this!! I want Jamie to be "normal." I don't want him to have to go through life being different. I don't want him to have Aspergers. I'm not strong enough for this.