Is there real help?...

[Mountain9Mom]

<FONT font="Times New Roman">My 2-yr-old boy was diagnosed as autism recently. We already knew that he had speech delay and communication delay awhile ago. We have therapist coming once a week.

Although the therapist keeps telling me how much progress he made, I have to say that I didn't see it. I read many books about it and it seems Autism is not curable, right?

So how much have you helped/changed your kid? What is the most effective way for you? I don't feel much help in the current therapy and definitely need more help.<FONT font="Times New Roman">

 

[Mom2all]

My nephew is autistic. For him, speech therapy went on for several years without much progress. Then one day it almost seemed it just clicked. He has not stopped talking since. He was about 6 then. Its a long road. I know its hard. The only hope I can give you is they are researching it every day and coming up with great treatments. Get in to some support groups and find parents for you and future friends for him.

 

[Mountain9Mom]

Thank you so much. I know I must be strong. If I feel hopless, how can my son feel?

 

[bssage]

My daughter is 9 yr old autistic. In the beginning it was overwhelming. Really it kinda stays a little like that. You just get accustomed to the things that go along with it. Most advice you will get is subjective. There is a saying in the Autism community. "If you know one child with Autism. You know one child with Autism" What is meant by that is that they tend to be quite unique. their sensitivities, and what differ widely from child to child. The interventions <U>We</U> have found some success with are a close collaboration with her teachers and educational team, A internal medicine doc (Similar to MADD) who has put her on a schedule of supplements (much success). None of that is a covered cost, quite expensive. But a necessary evil. Music Therapy has shown proven helpful. And believe it or not. Ipad has lots of very useful apps specifically for Autism. THE SOONER YOU BEGIN INTERVENTIONS THE BETTER. There are a lot of people taking advantage of the Autistic community. Use caution and ALWAYS read the find print. Be carful of interventions that are not data driven and instead have a bunch of testamonials Caution, Caution.

I could write a book. So long story short. This is a link for IAN project. Its kinda a clearing house for interventions, research and current events. It is not a site that sells. Its a place that can help you evaluate interventions. See what other people have success with. And ask specific questions to qualified experts. The have a community forum that I have found extremely helpful when sorting through the bs.

http://www.ianproject.org/

There is also some information as to the legal responsibilities in regards to the school and state. I attend this and while we maintain a great relationship with the school. There are plenty of horror stories of people who have issues. IMHO useful for ANY SPECIAL NEEDS PARENT.

http://www.wrightslaw.com/

I know I just layed a big ball of burning crap on your lap. But its really not a terrible thing. Chloe is very loving and it has been very rewarding being her dad. She really is the highlight of my day.

 

[Mountain9Mom]

Thank you , bssage, for the information.

It's encouraging to know some others have similar experience.

 

[bssage]

I really didnt have time to finish.

I know its a scary time for parents of the newly diagnosed. And you going to hear a lot of the struggles and hardship for parents of any special needs. But believe it or not there is an upside. And I should spend a little time with that.

While special needs kids present more challenges. The also present you with more opportunities for victories. Things that other people take for granted turn in to a reason to celebrate for a special needs parent. You have been gifted a chance to make a significant positive improvement in someone else's life almost daily. Not everyone has that chance.

Being a special need parent empowers you and lets you be all you can. It will bring out the best in yourself. You will find yourself researching, digging through information, running you own trials to find things that work and discard those that dont. Its really something you will begin to take a lot of pride in.

Its been my experience that special needs kids arent as put apon with the norms of society. At ages when other kids are concerned with " Its not cool to hug or kiss mom and dad as school" its a non-issue with them. I have several sessions daily with Chloe that are snuggles kisses and tickles. Its a blast, you'll see. Autism kids are not as influenced with peer pressure or commercialism as others. They tend to like what they like. Spending a lot of money on toys and such is a huge waste of money with my daughter.

You are now an elite group of parents. We welcome you with open arms. You will meet them at appointments, school functions, and in support groups. They tend to take parenting to another level. And when gathered together in groups you can feel the pride they have for their kids. Its in the air thick and unlike anything else.

Its hard to explain. And I enjoy many of these things with my son. But I think special needs kids take being a mom or dad to another level.

So please take heart. Your best days are not behind you. They lay in front of you, many of them. So many that I promise at some point you will understand how blessed you and your young family are. And think people with "normal" kids are really the ones missing out.

 

[bssage]

Also there has been a lot of states passing insurance reforms for autism. You should check and see if your in one of these. It requires insurance to cover a lot of stuff.

I can set you up with a lot of links for info. Just pm me it you want more.

 

[Mom2all]

One thing that I read and we started doing with my nephew is to clearly state and give details when talking to him. I do not know if all children with autism are like him, but for us the most frustrating thing was the questions. Typical conversation would be like;

Can I use the bathroom?
<I>Yes Logan. </I>
Which one?
<I>Any one you want to?</I>
Can I use the hallway bathroom?
<I>Yes Logan, Ether one.</I>
Can I use your bathroom?
<I>I don't care Logan just go.</I>
Aunt Kelly, can I use the hallway bathroom with the door closed?
<I>Of course. Go! </I>
Ok, I'm going to use the bathroom and close the door, ok?
<I>Ok</I>
Do I wash my hands?
and it just keep coming like this....

At which point, I'd be pulling out my hair. And he done it for everything. Something to drink, putting on shoes, eating a snack.
I know that your son is only 2, but I wanted to share because this was the thing that made us all a little crazy. A 2 second thing turning into a 20 minute thing. But I read that children like him needed specific instructions and they need routines.

The next time he came over, I literally said, "Today, Logan, when you need to use the bathroom you will use this one, close the door and after wash your hands and then turn off the lights when you are done. This is your cup, the red one, it will be right here, and this is the drink you can drink when you are thirsty.... etc. "

I promise you, that very first day, I watched him go the bathroom and get his own drink without coming to me. I almost fell on the floor. Now everything we do with him is very planned, and he has a watch and has to do every day things like lunch or snack at a specific time, but life is so much easier for us all.
Just read... research and know that you are not alone!

 

[Mom2all]

I wrote all of that without thinking about the fact that there are different kinds of Autism. My nephew has Asperger's syndrome.

 

[momtoallkids]

Personally, I have aspergers syndrom and i am pretty sure that my 10yo and my 6yo nephew do too. although autism comes in many forms, for the higher functioning forms detailed instruction and a constant routine is nessisary. Most autistic children can not handle change, at all. straying from their routine can have drastic conciquences. my 10yos weekly schedual is so set that when something goes wrong (like his therapist or his mentor not showing up) he gets very upset. when this happens i feel so helpless. when you do have to make changes to their routine the best way to aproach it is to sit them down explain the changes and why and go from there. again though, this does not work with all forms.

talk to your local medical center. they will have information on support groups for parents, programs for kids, and specialized services.