Update....

iVillage Member
Registered: 09-12-2008
Update....
5
Sun, 09-19-2010 - 9:12am

I have not updated or posted on here in such a long time. Most of you are on facebook and know Gabe's story, but I thought I would share on here too.

It has been one rough summer for Gabe and the rest of us. He has refused to eat any solid foods since The beginning of July. Because of this and severe rapid weight loss he was started on tube feedings. He has an nasal gastric tube and is fed during the day and continuously at night. He has gained some weight back...and looks great. We are very happy about that because after almost 2 months of not eating he was starting to have sunken in eyes and look pale. His hair was all dry and he had no energy. He definitely has energy now! :)

Gabe started kindergarten this year and it has been horrible. His behavior is something I can't even describe. I have never seen him act the way he is acting now. He pees his pants, he spit at his principle, tried to hit him, runs around his class room, won't sit at circle time, plays in the bathroom, yells at his teacher, won't transition at all, etc. I could go on all day about his behavior. What is so bothersome is he never had behavior issues this severe. Gabe never transitioned well....but this is much worse. My guess is he is too overwhelmed. There is too much change going on. It's too rapid, too many kids (21 in the room), the lights, smells, sounds....they are all just wigging him out.

That being said....we have a meeting on Thursday. It's going to be a placement meeting. I do not want him back in his mainstream kindy class. He can't handle it. It's not fair to him, his teacher, or the other kids in the class. And it's only setting him up for failure and hating school.

I either want to home school him or have him in the autism class. I am very worried the school is going to try to place him in an ES class. (emotional support) But he has no business being in an ES class because he doesn't have emotional problems...he has autism. His behavior IS his communication. If they only offer ES...I will refuse, hire an attorney and go after them for better placement.

So...that's our update in a nutshell. All of this is wearing me down....and emotionally I have been a mess. I hope Thursday offers some relief.





Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)





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Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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iVillage Member
Registered: 03-27-2003
In reply to: cl_tingngabe
Tue, 09-21-2010 - 9:11am

(((Jessie)))

                                

iVillage Member
Registered: 10-08-2009
In reply to: cl_tingngabe
Mon, 09-20-2010 - 11:07pm

iVillage Member
Registered: 01-07-2008
In reply to: cl_tingngabe
Mon, 09-20-2010 - 8:10pm

I'm so sorry you are going through this. You must be feeling exhasuted. I hope you can find a better place for Gabe soon, stick to your guns on that. He might ell be able to come back to a mainstream class with support later but right now that doesn't sound like what he needs.

Have you had a chance to look at the ES placement? Does it really not provide anything he needs? It sounds like he needs to be in a safe placed, with minimal stress and nice clear boundaries and expectations and a LOT of structured support. Does anyone in the team have specialist training in ASD? If not, can you get someone in who does? In my experience this makes a world of difference in finding the right kind of support.

I hope things get better soon

Kirsty mum to Euan (11, Aspergers Syndrome) Rohan (7, NT) and Maeve (4, NT)

"My definition of housework is to sweep the room with a glance"



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iVillage Member
Registered: 02-28-2008
In reply to: cl_tingngabe
Sun, 09-19-2010 - 2:59pm

{{{HUGS}}}

I didn't know what was going on with Gabe, how stressful this must all be for you!

Stand up for the placement you believe in. It's his right to be placed in the best environment for him to be in.

You and your family will be in my thoughts this coming week. Thanks for the update.

Andrea, mom to

Graham
Miles
Anson

Andrea, mom to

Graham
Miles
Anson
iVillage Member
Registered: 10-03-2004
In reply to: cl_tingngabe
Sun, 09-19-2010 - 2:00pm

Such big ((((((hugs)))))) to you, Jessie. I know from personal experience what this is like and how helpless and hopeless you can feel, but you are doing the right thing and sadly, with our kids, finding the answers in these situations is trial and error. It is so painful to have to watch your child struggle.

As Gabe grows and learns, his abilities to cope will improve, but he needs to learn at the pace that is appropriate for him. There is no one right way to educate all children with autism, each one is too unique for that to work. Our son is thriving at a school that specializes in teaching kids with autism. He is safe there to fail and try again, and the school is demanding, esp. in terms of behavior and responsibility. He is growing in independence and self confidence, and as he has lots of friends who are like him, he doesn't consider himself "too weird".

You are a great mom and Gabe is lucky to have you. Take care of yourself as best you can. My son recently had a huge meltdown on a beach and I know I spent the rest of that day mourning, you'd think after all these years I would not get hit so hard by his struggles, but I still do!

more (((((hugs))))))

Sara