Accomplishments (moved entry)
The fighting with the school system has begun. I spent an hour on the phone yesterday being told that, they new my kid's better than I and I was wrong about their needs, or what the school system can provide for them next year.
They are also reevaluating Sean, to ensure he is 'eligible' for special needs therapy.
DUH! He has Spastic Displegia and Elongated Brain Stem! It doesn't have a cure and it doesn't go away on its own!
In other words, they are going to try and mainstream him into a classroom of 28 children and normal-paced schoolwork.
They might THINK they are! We have been there, done that. He went from having all C's and D's, to having A's and B's since I changed him to an LD classroom.
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The Taylor/Colin issue is still being fought, hoping I will back down from an IEP meeting being called. The news yesterday was that, THEY HAVE AUTISTIC KIDS in their classrooms. Well, to be exact they have PDD kids in their classrooms that are on the low end of the spectrum. There is a major difference--duh, and I am not a teaching professional either.
I heard a comment recently that, someone believed I didn't have a right to fight for my kids special needs because, I caused their problems, and I have no right to expect anything in return.
You can't cause Autism in children. It isn’t genetic or caused from anything during the pregnancy. That was proved. Unless it is finally established that the vaccinations with mercury caused it--and the Biotech companies no longer can afford to pay the high-priced lawyers from preventing it from coming out-no one will ever know the truth behind the disease.
Sean had surgery at 6 weeks, on the recommendation of a well-know, now-famous doctor. There were slight risks, but he said that they rarely happened.
Sean was the rarity. He bled out for a long time. They couldn't control the bleeding. As I paced in a waiting room, nervously watching the clock for 2 1/2 hours, his surgery had complications. The surgery was only supposed to last 1 ½ hours tops. Without any knowledge, my son was losing massive blood in the operating room.
It took us 7 years to find this out. The new neurologist found it in the surgical report. We were only told he was anemic from the surgery. It was never divulged that his crit level was severely low.
It is believed that, the EBS was caused from his head being misshaped prior to the surgery. Because they reshaped his head, it is possible that the brain couldn’t adjust as quickly. While preparing for the surgery, one resident noticed some 'questionable symptoms' being displaying and requested an MRI. The head-honcho refused, saying that he saw no need for it at that time for such a ‘routine’ surgery.
7 years later, a new neurologist found the report and realized it SHOULD have been done. The surgery would have been postponed and/or a specialist would have been contacted.
I fight for my children like anyone else would do so for theirs. I don't see any difference between the parent that fights for their kid to be on the soccer team, and my child needing services that will help them to mainstream into this world. The hope is SO-THERE! The need for them is minor, considering the progress that can result.
I see that progress. I saw it even more so today.
What brought me to tears today is many things--The breaking point was when I was making dinner. Taylor came right over to where I was standing, pulled on my arm and said, "EEEEEE"....This meant, EAT! Yes, she tried to speak. A child that no one believed would ever be able to communicate without picture books, just said Eat as best that she could!
I thought I might be over-reacting a bit, since she tends to use all-vowel sounds without much meaning. They are usually "AH'S and OH's", so I took her over to the banana's to see what ‘words’ came out of her mouth. She pulled my hand that held the banana, looked me directly in the eyes, and said, "EEEEE".
She understood. She was asking to eat!
I had to come down and write this because; I started to cry, knowing that I was beginning to believe I was wrong. I now know that, I am right.
She has a chance. Colin has a greater chance because; in small settings he can advance at a high rate. He has more possibilities of mainstreaming by 1st grade than his sister, but he needs the help to do so.
I am going to bring up home schooling at the meeting. The school system doesn't like you to do that with special needs kids. It costs more--they have to pay professionals to come to your home, which is cheaper for them to go to the school in a group setting. They have to do more paperwork and have constant evaluations. They don't want this.
To tell you the truth--nor do I.
Kids need to be with other kids, if they are able to tolerate it. I grew up with all adults. I had a hard time relating with my peers on the same age level. The autism only adds to this theory for me because, how can they evolve if they are not put in the surrounding that they need?
I have talked with the head of the autism program and we are trying to get a school started. I have to also contact my EI friend, Valentina and ask her for assistance. She is probably the best versed person on special needs that I have ever known, and loves kids so much that it amazes me to watch her.
If nothing more, today is a day that enforced this need for ALL children to receive the schooling that is right for them.
I am preparing another letter to my State Rep and Senator. My Senator is the one that fights for special needs issues all of the time, so she is a better choice. The State Rep is also an old neighbor--crooked is just one word in her political career and there is little she will do, unless it is election time.
Do I feel my kids deserve more? Absolutely--but, doesn't every parent feel that way? Wouldn't every parent go out of their way to ensure their child got the best education possible? Unless they are not good parents that care for their child, of course they would!
I am willing to work 2 jobs if I must, and live on 2 hours sleep if this means, private versus public. The problem with that is, private schools don't have special needs help (at least here in Mass.) and will not accept a special needs child.
In that case, I must start that school--with or WITHOUT the help from the state. I will find ways for parents to acquire financial help, grants, etc. to have their child attend. There must be ways. I just have to find them.
I am rambling. Someone that doesn't know me might think I am being histrionic over a small little word. Those that do know me are aware of what this means to me.
My autistic daughter just spoke. She said, "EAT".