PDD/Autism discussion board

[Kallison]

Any recommendations?

 

[Nik's Mom]

Sorry, no suggestions. But feel free to chat here! There are lots of us who have autistic children!

 

[thumpersfriend]

Hi all, I think this would be great to have a discussion board. There are questions I have about my 2 1/2 yo granddaughter that doesn't relate to Disney. I have a question and deep in my heart I am hoping for good responses. My DGD is still not saying mama or indicating what she needs. My daughter in law just got a speech evaluation this Tuesday to help her speak. Do autistic children carry on a normal conversation when they can speak or will there always be challanges there? She can sing her abc's on tv and count to l6 but the only word she says is ball. How can a speech therapist help if eye contact is so hard for them to achieve? Do you all think 2 1/2 is too young to start, partly because it will come out of their pockets (and ours)? I have been reading this board for a few months and am so impressed with your knowledge and true love for your children. Also one last question I have is, will she lose some of the things she has learned? I asked this because she could crawl down our stairs a few weeks ago but yesterday she acted like she had no idea how to do it. Sorry to start off with so much but hopefully someone can give me some answers.

 

[Nik's Mom]

Hi! Please feel free to post your questions! Don't worry about being non-disney! The DisAbility board is the best about helping with questions!
My ds hit what we refer to as "the brick wall" when he was about 2 1/2. He was able to speak a little bit of spanish and had a vocabulary of about 50 words in english until then. Then he hit the imaginary brick wall and lost a lot of his speech. Eventually, he was placed into speech therapy and I cannot even tell you what a huge difference it has made! He still has a speech delay, but is much better. He is high functioning, but still struggles on a lot of things. He's also got some fine motor skill issues, etc. But he will be starting occupational therapy in the Fall, and they are optimistic that we will see more improvement.
In regards to speech therapy, they will do wonders for your DGD! They are very good at helping with eye contact. It is truely amazing what they do. Try to get your DGD involved in a special day class as soon as she is old enough too. That is a big help!

 

[thumpersfriend]

Thank you very much, it is very encouraging. Glad speech therapy is good and will do all I can to help her with it. I am interested about this brick wall and does it happen several times?

 

[Nik's Mom]

"the brick wall" is just something we call it. For our ds, it only happened when he was 2 or 2 1/2. It has never happened again. But one thing that I've learned is that each autistic child is different. So what one child experiences, the other may not. But I know for most autistic children, they tend to have incredible memories. My ds always amazes me with his memory! Most likely, your DGD will or already has that memory.

 

[SueM in MN]

You are welcome to discuss autism on this board (even if it's not WDW related).
But, if anyone knows of a good autism discussion board, it would be helpful to post it here so you can get more broad experience.

 

[tw1nsmom]

Do you all think 2 1/2 is too young to start, partly because it will come out of their pockets (and ours)?

2 1/2 is NOT too young to start. The earlier the intervention, the better. But, I'm curious as to why it will be out of your pocket? Your DGD should have no problem qualifying for your state's early intervention program. You don't need a Dr.'s referral, a parent can request an evaluation for services. Actually, depending on how close to three she is, it may be just as easy to request an evaluation through the school district. At three she becomes a "preschooler with a disability", and the school oversees the program.

You may also want to look into ABA therapy. It has worked wonders on my friends son.

 

[Figment1964]

You are welcome to discuss autism on this board (even if it's not WDW related).
But, if anyone knows of a good autism discussion board, it would be helpful to post it here so you can get more broad experience.

There is a good discussion board on the OASIS site. It's focus is aspergers mainly. The link is: http://www.udel.edu/bkirby/asperger/

Hope that helps!

 

[MomOf2DisneyKids]

2 1/2 is NOT too young to start. The earlier the intervention, the better. But, I'm curious as to why it will be out of your pocket? Your DGD should have no problem qualifying for your state's early intervention program. You don't need a Dr.'s referral, a parent can request an evaluation for services. Actually, depending on how close to three she is, it may be just as easy to request an evaluation through the school district. At three she becomes a "preschooler with a disability", and the school oversees the program.

.

can I just ditto all of that?

Good luck!

 

[Nik's Mom]

Yup! My dis was in the special day preschool class. He made huge improvements almost immediately. It's like a roller coaster. He'll make huge improvements, then kind of stay the same for a while, then improve again.
And we don't pay a dime for the services. It's through our local school district. I know the preschool program starts at 3, but there is an early intervention program that will take children under 3.

 

[Brightsy]

Hi all, I think this would be great to have a discussion board. There are questions I have about my 2 1/2 yo granddaughter that doesn't relate to Disney. I have a question and deep in my heart I am hoping for good responses. My DGD is still not saying mama or indicating what she needs. My daughter in law just got a speech evaluation this Tuesday to help her speak. Do autistic children carry on a normal conversation when they can speak or will there always be challanges there? She can sing her abc's on tv and count to l6 but the only word she says is ball. How can a speech therapist help if eye contact is so hard for them to achieve? Do you all think 2 1/2 is too young to start, partly because it will come out of their pockets (and ours)? I have been reading this board for a few months and am so impressed with your knowledge and true love for your children. Also one last question I have is, will she lose some of the things she has learned? I asked this because she could crawl down our stairs a few weeks ago but yesterday she acted like she had no idea how to do it. Sorry to start off with so much but hopefully someone can give me some answers.

It sounds like you DGD needs more than just a speech eval.
As to the loss question, yes ASD kids can lose what they learn. My son, now 3 1/2 had been saying milk, mama, and thank you at 18 months, but by 24 months he was pretty much non-verbal. He got diagnosed w. HF ASD at 26 months. At that time his vocabuary was less than 10 words and no two or more word phrases. This was a little over a year ago and now he has a vocabulary of more than 100 words and has several multi-word COMPLETE sentences at his disposal! This was with intensive work on my part and the part of ABA skills trainers, and his pre-k teacher. He's in a wonderful school program right now and he's the class favorite (so they keep telling me). And they think he's gifted too!
Anyways, the point is she's is not too young for work. As a matter of fact she's at the perfect age for it! The younger our ASD (and related) kids get help the better!
You can start working with her when you see her too. Make a game of it. We use a mix of treats to reward my son when he gets things right. Sometimes it's Goldfish or yogurt covered raisins, and other times he gets to sing a song w/ my Figment Puppet.
Keep your chin up, having an ASD (or related) child in your life can be a big challenge but it can also be rewarding.
I'd love to make my DS neuro-typical and take away the rough spots life is going to offer him w/ his issues, but sometimes I wonder, had he been born neuro-typical would he be the wonderful little guy I have now?



Sara

 

[SueM in MN]

The others who posted about school and Early Childhood Services are correct.
Every state is mandated to provide what is called "Early Intervention" or "Birth to 3" programs. For the children under 3, it is an Early Childhood Program, not connected with the school system. Many of those are home based (where therapists will come into your home). Some are center based (where the child comes to a center for services). Once they reach 3, the children's services are the responsibility of the schools.
Those are services you are paying for with your taxes. Anyone can refer for an Early Childhood evaluation. Whoever diagnosed your grandchild would be able to refer, or the parents can call. If they don't know who to call, try your local health department, the school district office (ask for their Early Childhood Program). Anothe place would be United Way - their information service useed to be called "First Call for Help." Now in some places, it's called United Way 411.
Also, this website, www.pacer.org has a lot of resources and links to local assistance in each state.

 

[marj70]

My son is 3, will be 4 in October. We did the early intervention here in GA, where we are stationed (military). It was called Babies Can't Wait and was a GREAT program. I never thought he would speak but through intensive speech therapy he is verbal now.

When he turned 3 he started going to the Special Needs Pre-K program at the local public school. He loves it!! He has made so much progress, and the staff is truly amazing! It is a great program, I cannot believe it is free. I would pay a ton of money for the services he is receiving. It's good also because it has been like pulling teeth to get the military insurance to pay for hardly anything. Autism is considered "mental illness" which carries huge co-pays. I do think we'll soon be able to get him into the military program for Exceptional Family Members, which will make it much easier to get services paid for. I actually had to apply for a medicaid deeming waiver to pay for his speech therapy over the summer, which I find outrageous.

 

[mlwear]

www.autismtalk.net

WONDERFUL message board. Great folks. Super support. A few adults with Aspergers and/or HFA join in and tell us how they felt about things and how they experience life, this is amazing. (I must warn you that as is often the case with Aspergers, they are strongly opinionated. But, there is insight is worth it and we all understand that it is just the way they are..) Mostly US users, but many U.K. and Canadian. Currently one Australlian regular.
Great info. on a wide range of topics.
Format is the same as this board.
Seldom if ever does anyone chat, mostly messages.
It helped me get through the whole process of diagnosis...grieving, why?, anger, acceptance.
Just can't say enough great things.

 

[thumpersfriend]

Thanks for the input everyone. My granddaughter is in the early on program since March of this year. She has done pretty good with it, we still can't leave her alone though because she gets so upset. The teachers are relieved when I stay with her so my daughter-in-law can go to the mothers group discussion. She also has someone that comes to the house once a week for an hour. This summer has been summer school l 1/2 hour once a week. There are a few mothers in the group that have the extra speech therapy and they say they have to pay for the extra. So far she hasn't had any speech therapy as such from them. Mostly they are getting us to make eye contact and do brushing and compression. I think my son might make too much money to qualify for private speech therapy but I am not sure. Not that he makes a lot of money, lol. But thanks for the advice and we will keep checking about funded therapy. I will certainly keep reading this discussion, and I appreciate everything you can offer.

 

[thumpersfriend]

What is ABA therapy? Thanks.

 

[tw1nsmom]

thumpersfriend:

These are not need based programs. They're governed by federal law. It's called the IDEA (Individuals with Disabilities Education Act). I'm less familiar with the terminology involved in the early intervention program, but the same laws apply. Your grandchild will be transitioning to the preschool program soon. Based on what you've said, it seems imperative that she be enrolled in a center based special needs preschool program.

A parent can request a meeting at any time (do it in writing). Have her parents check with their early intervention coordinator about when they begin transition proceedings. Someone else will have to give you the particulars about the procedure for early intervention meetings.

Meetings at the preschool level are called CPSE (committee on preschool special education) meetings. Your grandchild shouldn't need a seperate eval. to qualify for preschool services. If she does, have your daughter/son request an evaluation from the school district immediately. They have sixty days from receipt of the request to have the evaluation done and a CPSE mtg including the parents. The evaluation should include: Speech, Fine and Gross Motor and Psychological evaluations. If the parents do not agree with the results of the eval. The can request an IEE (independent educational evaluation) at school district expense. If they refuse, there's an appeals process. If they agree, they will give the parents a list of acceptable evaluators. The parents can bring whomever they want to the meetings. If the child is seeing outside specialists who have pertinent information, they can bring reports from them, or the person themselves. If an evaluation was done by a person with acceptable credentials, whether it was at school district or parents expense, the school district must consider the reccomendations in the evaluation. They don't neccesarily have to follow them, but they must consider them.

I'm sorry this is so long.

Some points to remember:

Have them put everything in writing and keep dated copies of correspondence. Keep a dated phone log of all conversations pertaining to the child. NEVER use the word WANT...ALWAYS use the word NEED. Don't use the word BEST...use the word APPROPRIATE. Try to get your hands on a copy of the IDEA (it can be downloaded from the web, but it's very lengthy). Have the parents bring it with them and put it and the parents rights booklet that every parent should receive on the table in front of them at meetings. Other terms to know are "FREE and appropriate education" (FAPE...what every child is entitled to under the law) and "Least restrictive environment" (LRE..you want the child educated with her typical peers as much as will be beneficial to the child).

Know that some (not all) school districts (and even states)will omit or lie about the child's rights and their responsibilities. The parents really need to make themselves aware of the child's rights.

I'm sorry, I've been rambling. I'd be happy to try to answer any other questions you have.

Dawn

 

[thumpersfriend]

Thanks Twinsmom, but my grangdaughter is in the early on program and will be in the preschool program when she turns 3. I think this is a great program, except they seem to think the communication should come from pictures ( which we have as magnets and flashcards, I made a cloth book with all her families pictures) She has had all kinds of evaluations and is definately in the program you are talking about. We just think maybe extra speech may be the way to go for now. I am printing out all of your recommendations and opinions (hope you don't mind, and will study them more to make sure she is getting all that she is entitled to. We love her teachers and they seem to know what they are doing, they seem to think she will be able to go to the preschool program in February. Then it will be 4 days a week instead of l. You all are wonderful to help and I really value your opinions.

 

[mlwear]

Things will change a lot when she turns three. However, even before 3 she is still entitled to funded speech therapy. The younger she starts the better. My oldest son had a speech delay at 15 mos. and the state (NY) fully funded a speech therapist to come to our house twice a week. It has been so long ago that I can't remember all the terms. I think the pediatrician helped me get started. Anyway, the sooner the speech therapy starts the better. I suggest you contact the local chapter of the autism society of america. Go to www.autism-society.org and there are links to find the chapter nearest you. There will be a phone number and they will help you get on the right track. A friend of mine got GREAT services from Easter Seals for her autistic son, but when he turned 3, the services were terminated. I would contact them. If they can't offer you anything, they will give you leads.
Your granddaughter is young but there is much available to here and she needs it and is entitled to it. The younger the child the better the chance for language development.
When you write about income, it is probably Medicaid related and SSI. Income has to be fairly low to qualify. However, most (if not all) states have a waiver. This allows the child to get Medicaid (not SSI) and other services deemed approprate for their disability (ex. respite care hours) without regard to the parents' income. Above organizations can probably give you more information or contact your local ARC. In some states (like mine, Virginia) there is a waiting list for the waiver (we have been waiting for 3 years and I know of people waiting for 10!) in other states there is no waiting list.
I know all of this is so much info. Everything that tw1nsmom wrote is great advice. You can also check www.wrightslaw.com and I highly recommend the book Wrightslaw:Special Educaton Law.
I'm leaving soon but will be back on the 21st. PM me if I can be of any help.