OK, I'll admit it...I'm scared to death about DS's AS...I don't know what to do.

[disney-super-mom]

You'd think I'd be a pro at this by now.

You'd think I'd know all there is to know.

You'd think after researching EVERYTHING there is to read on the subject over the last 4 years, I'd be well informed about...well...everything relating to Autism spectrum disorders.

You'd think I'd know who to call...who to talk to...how to get it done.

Honestly, I feel as lost as I did the first day I found out my son was on the spectrum. I make call after call, but no one can tell me what to do. There's no protocol to follow. I've even called organizations who are supposedly all about autism spectrum disorders, and they politely tell me me son is either too old or too young to receive any of their help.(DS is 7) It's like all the assistance is either for preschoolers or for young adults with autism who are transitioning into an adult life. Where is the help for the kids aged 5-20?!!!

I'm at my wits end. If there's help out there (I see it all the time on TV anyway), I can't find it. No matter how hard I try, there's just no help anywhere (at least where I live). Heck, my DH just lost his job last month, and I'm a stay at home mom. I'm just at a LOSS!

Everyday that I see my son get off the school bus (that he's actually there and not lost), I thank God.

The local school just poo-poos his disability and my concerns.

I'm just............desperate............and I hate it.

 

[1stluvispooh]

Disney-super-mom I know you must be feeling like you are in a boat all by yourself but trust me your not. (I'm there too ) Maybe if you tell us your specific concerns we can help you. If you have issues with the school set up a meeting with the teachers, school physiologist and principal I would keep having meetings until I was satisfied. Heck if things were really bad I would set one up with the school board president too.

I know it's hard sometimes to know what the right thing to do for our kids is. Just keep plugging away. I wouldn't say that where I live has the greatest services either. Everything has an ungodly waiting list and I feel like time is ticking away and no progress is getting made.

Hang in there things will get better.

 

[tw1nsmom]

I'm so sorry you're going through all this! I know it can be overwhelming and that you must feel alone. I could talk to you about federal law, but I think it would be most helpful for you to contact someone within your state who can help you with how your state interprets federal laws and what services are available to you. I done parent advocacy training through New York's Parent to Parent. It's an advocacy and training center that helps you to learn the laws and learn about local and federal resources. Here's a link to the Washington state Parent to Parent

I know that each office is run a little differently. I've found a lot of support and advice through mone and I hope yours is just as helpful.

Hang in there. Let me know if I can help.

 

[MDDisneyDevotee]

As a single parent raising an AS child I can totally sympathize with your feelings of frustration. My son is now 10 and we have gone through the whole gamut of emotions and fighting with the school system to get him appropriate services. I have moved him from public school to a private school for gifted to homeschooling and finally moved to another state to get him into a special public school program for gifted/learning disabled children. I can safely say that there were times I truly felt there was no place for my child and that there was a wholesale lack of understanding of what my son's needs were. There were times when he was so unhappy he couldn't see why in the world he was every born, and felt totally worthless as a person. My only mission in life was to allow him to see that what made him different didn't make him wrong or bad. I spent a lot of time figuring out how to tkae his strentghs and use them to modify or support his weak areas. It CAN be done without spending thousands on special services or special schools. Now at ten he is happier than he ever has been and his future looks bright. I am so sorry that you are under so much stress right now...please don't hesitate to ask any specific questions of me that may help your stiuation and I'll be glad to help in any way I can.

 

[shoegirl1020]

It really does feel like you are out there alone, and I don't know about your school, but my ds's school DOES NOTHING to get the parents together, no PTO, no school photos, NOTHING.

We are lucky enough to have several groups in our area, which will answer questions you may have. The Austim Project was wonderful in accepting my ds into their play groups. I'm pretty sure that all states have an Austim Project. I never got to use it, but my chapter had a "resource room" which I'm assuming had resources.

I would check that out first as a starting point

 

[disney-super-mom]

Thanks everyone!

I'm just venting - BIG TIME - that's all!

It's just one little thing after another, and after a while it just feels like I can't juggle any more balls in the air (if you know what I mean). You know...like all those little problems start to feel like one big weight on your shoulders.

I don't even know where to begin, but here's just a few examples.

Our kids doctor (who has known them since they were babies) took the Head of Pediatrics position at a local hospital - now I have to find a new doctor for them.

Of course we all face insurance coverage problems when it comes to our kids and Autism.

Ryan is still not reading, and during our last meeting, was making insufficient progress (in EVERYTHING) towards both his short and long term goals. You'd think after a year and a half of making little progress that his resource teacher would try a new approach. I'm calling asap to request that she does.

The regular school bus driver was ill or something, and so there was a substitute bus driver, who happened to completely miss Ryan's bus stop. The other kids on the bus finally got the substitute bus driver to stop, and he dropped Ryan off - a BLOCK AWAY - to walk home! Luckily I was standing out front of our house, like I do everyday, so I could see Ryan the whole time as he was walking home. Of course Ryan was in tears because after the bus driver passed our house and his stop, he didn't think he was going to GET HOME AT ALL, and of course it was a change in his routine. It scared the poor little guy to death. Well, I called the school district's transportation office to report it, to let them know that not only did this happen, but it happened to a young child with autism...and you know what?...the lady I talked to actually thought it was FUNNY!

My DH lost his job last month because the store was cutting costs - with NO prior notice. The decent thing would have been to at least give him one month notice so he could secure another job and medical insurance before losing the one he had (assistant store manager), but I guess that's too much for a dedicated employee, who never missed a day of work, to ask. Not to mention...they also did it right before the holidays.

I could go on, but I'm sure you get the idea of where I'm coming from.

ARRRRRRGGGGGHHHHH! When does it get easier?!

I want to take my family and move to a deserted island.

 

[1stluvispooh]

I'm sorry that you are having a hard time right now and know well the need to vent. As far as the bus situation goes have you thought about having him take the (dare I say it) special needs bus. I have my DD 6 who is also autistic take it for the simple fact that she can't cope if she doesn't have a seat belt on. (It use to be everyone else had to have there seat belt on even before the engine was turned on ) They would pick him up and drop him off at your door. (In my school district they won't let the kid off the bus unless a parent is there. (Last year they almost didn't leave her with her dad! ) It may be more for you so you don't have to worry about a substitute driver missing his stop.

 

[Goofyluver]

I am the mother of a child who has a rare neurologic disorder. We have been told that he probably falls somewhere on the AS. I feel your pain. My DS is 10. I also work for the school system and I still have to fight for everything we get. It is a never-ending battle. What are you looking to get information on? Maybe I can be of help??? I don't know. My advice to parents that I work with is always to take ownership of your child and their disability. You'll find your way. It's taken us 10 years and we're still fighting.

 

[feedindy]

If he falls on the low end of the spectrum, I would recommend looking into a gluten free/caisen free diet. My daughter is on a strict gluten free diet due to a different medical issue, but I have found in my research that a lot of parents of autistic children (mostly Asperger's syndrome) find that a gluten free/dairy free diet helps tremendously.

I wish you luck. Even though my situation is completely different I can relate somewhat. I think there are times I wish my child weren't quite so special.

 

[hookedup]

Although this is a fabulous support group here at the DIS it sounds like you need some local support. In my hometown we have several support groups for AS families and other developmental disorders. I am not sure where you have looked but there has just got to be something locally that you could join.
I have made a lot of friends at the appts I take my son to (waiting room friends) and the networking I have done from them has led me to some wonderful resources.
Also there are a lot of Yahoo groups and other web based support groups that may offer you some support or maybe even suggestions for local resources.

I know its frustrating and some days very very overwhelming but you will get through it and just remember - you ARE a super-mom!

 

[Taratink]

I have a DS7 who has AS too. I feel the same exact way as you. He was dx in August. I have read and researched and I feel lost too. Those are the exact words I use. My DS is high functioning. Some days he is fine and other days he is spining in circles and is so impulsive. I never know what kid I will get each morning. This is such a strange disorder. I have joined a group called Aspergers Assoc. of New England. They sent me a packet and they have a bunch of seminars that I plan on attending. I am hoping that they will help. I am also starting to get on his schools case. Feel free to pm me. I don't have many answers but I could use a friend to talk to.
Tara