I have been posting on this forum for quite some time now about my 2 sons that are showing many red flags for ASD. Well, we ended up taking all three of our triplets to see Dr. Solomon in Ann Arbor Michigan last week for developmental assessments. He would not diagnose them this young but it turns out all three of my triplets are HIGH risk for ASD. He validated my concerns and pointed out some things that I had missed. He wants to treat them as though they do fall on the spectrum and see how they do over the next few months then he wants to see them again in December. He told us to do the following:
~P.L.A.Y project
~local Early Intervention through the school system
~OT for sensory integration
~in home speech therapy

So far the school system said they didn't qualify even though their testing put my boys developmentally at 7 months in their speech. That is half their AGE ! My daughter is at about 10 months.

Anyway, I am feeling really devastated, frustrated and overwhelmed. I am looking for support and advice. I have contaced Autism Speaks for the first 100 days packet. What else should we do? I swear I am so disappointed with our EI program here I want to move out of state to get better services. I have heard New York, Pennsylvania, California and a couple other states offer great services. If anyone is in those states can you tell me what services you are getting? Thanks so much.

Liz~ Proud Momma of BGB trips
Born on June 28, 2007
Lucian 3 lbs 1 oz
Zoe 4 lbs
Aiden 2 lbs 12 oz

Hi

Are your sons diagonised with PDD-NOS??? I had my boys checked when they were 16 mths old and they were told the same as what u are told about the symptoms , we are in CA and immediately i called EI , they wanted to do another evaluation on their own and the docs there said they DO NOT have symptoms of pddnos..so we had 2 different diagonosis but my insurance docs were gr8, they pushed and asked for services for my boys just as a precaution and i too kept requesting so EI did agree......They get ABA therapy, OT and speech therapy.....MY DD is not pddnos but still the docs wanted to evaluate her since she shares the same genes and she gets speech therapy.....so get hold of ped (ur ped or developmental ped and ask them to push for EI)...till they turn 3 yrs u will get home service ...IN CA to get ABA one has to have a diagonosis of pdd so that helped.



Its such a hard road and for me i am so so confused still now but what makes me happy is that they are getting the services...and trust me it really helps since we have 3 kids and its impossible to give equal attention so having therapies at home helps.

email me if u have more questions or need to talk to me, i will send u my ph no.

BBG born at 35 weeks 5 days
Adit-5 lbs 5 oz
Arul 5 lbs
Delisha 5 lbs 1.2 oz

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Thank you for your reply mdcoolus. My trio has not received any diagnosis yet. The developmental pediatrician would not diagnose them this young but he wants us to start therapy as though they are diagnosed and see if we can keep them "label free" so to speak. The problem with that is without a diagnosis they do not qualify for any services through EI. Our EI in Michigan appears to really suck (sorry for the terminology). I guess even if they did qualify my trio would only get 2 hours a week of a play group. Which seems absolutely absurd to me. Anyway, thank you again.

Liz~ Proud Momma of BGB trips
Born on June 28, 2007
Lucian 3 lbs 1 oz
Zoe 4 lbs
Aiden 2 lbs 12 oz

Liz,
It sounds to me like your three should qualify for EI services -- have you contacted the EI program directly (rather than through the school system)? In both places I have lived since our triplets were born (DC and Indiana) EI sent out its own assessment team and they determined eligibility for services. I would be amazed if they denied you, given when you've written! If that's really the case, is there an appeals process? Could you get the Dr. who saw them to support you with a letter or a phone call or a written copy of the assessment he did?
Good luck and keep us posted!
Rachel

Rachel,

I think the main problem is the services here in Michigan are awful that is if you can even qualify. I am in the process of finding out if I can appeal but truthfully seeing that they would only get 2 hours a week of a playgroup what is the point? I also called the developmental pediatrician and let him know that EI denied us. I haven't heard back from him yet. Thanks for your reply.

Liz~ Proud Momma of BGB trips
Born on June 28, 2007
Lucian 3 lbs 1 oz
Zoe 4 lbs
Aiden 2 lbs 12 oz

Liz,

Are you in MI? We are and my oldest dd, who is now 12 was diagnosed by Dr. Solomon at age 4. He is wonderful! Anyway, if you are in MI, they go by their adjusted age until 3 to qualify for EI services which is why many of them don't qualify. I agree with the other poster though, you can try contacting your local EI office yourself and let them know your concerns. My little ones don't qualify but because they are at risk with an older sister on the spectrum the office has already said I should call them directly if I have any concerns or notice either of them falling behind. If you are in MI I can give you all kinds of recommendations for places to go for therapy (we have been at this for a whil ).

Regardless of how or where you get help you are already WAY ahead of the game by noticing things early and seeking help. Children who start therapy this young have great success rates. You could try contacting Easter Seals, they do PLAY therapy and if they train you you could work with all three at home.

I know this is all overwhelming, try to take it one day at a time. Email me offline if you have any questions or if there is any way I can help.

Jessica
Mom to Parker, McKenna, ^Hadley^ born 10/9/07 28w5d
little brother Sawyer
and big sister Ashlyn
www.fourplusanangel.com

Thank you Jessica. I emailed you.

Liz~ Proud Momma of BGB trips
Born on June 28, 2007
Lucian 3 lbs 1 oz
Zoe 4 lbs
Aiden 2 lbs 12 oz

Hi LIz
I am so sorry about the assessments. I hope you are able to get the help you need for your children. You are starting young with them so that will be in their favor. I don't have much to add as far as therapy but I wanted to mention a few great books that I have read to help me better understand autism.

Louder than Words by Jenny McCarthy
Changing the Course of Autism by Brian Jepson
Healing the New Childhood Epidemics by Bock

http://www.amazon.com/Healing-New-Childhood-Epidemics-Allergies/dp/B0013TPUXE/ref=dp_kinw_strp_1

My kids are on a gluten free and casein free diet with good results as well.

Best of luck to you and your children,
Tracey
GGG 2/04

Editted to add-We also have held off on vaccinations for now. I wanted to make sure my kids were in a healthy place before I decided whether or not to continue with vaccinations. I want time to fully research this before proceeding.

We did look into speech therapy and I know that a sensory based program is what we considered.

Tracey,

I agree with your recommendations. I have read the first 2 already. I will get the third one too.

Why did you decide to do the GFCF diet? It seems so overwhelming. How did you get started? Where do you buy your food? How did you get your DH on board? Mine isn't that keen on alternative therapies.

My kids are NOT vaccianted at all. I am not against vaccinating by any means, I would love to be able to vax my kids and know that it is 100% safe but it isn't so I didn't. And I am soooooo glad that I didn't. I just had a strong strong feeling not to and it turms out for good reason. I think that my kids might be immune compromised and getting 36 vaccines would have probably caused them harm.

All all of your girls on the spectrum? What therapies have you done? What are you currently doing? What have the results been?

thank you

Liz~ Proud Momma of BGB trips
Born on June 28, 2007
Lucian 3 lbs 1 oz
Zoe 4 lbs
Aiden 2 lbs 12 oz

Hi Liz

Do your kids have any issues with eczema, constipation and/or diarrhea or asthma type symptoms? One of my dds had some issues with her stools, cradle cap and also some wheezing and coughing. I always told people she had a "touch of asthma". I decided to try the diet to see if it would help with these and it did. She also did some toe walking and had some issues with slurring speech. She has stopped toe walking and her speech is much improved although she could still use some articulation work. We have looked into speech therapy and may do that with her. Diet was the one thing I knew I could do at home and I really believe it has helped. I also put my other two daughters on the diet and have seen improvement in them as well. One of my daughters is very moody and she is much better as long as I respect her allergens. I have not done any other therapies with my girls as things seem to be mild at this point and have improved greatly with the diet and avoiding allergens.

You may want to do a peptide test through great plains lab before starting the diet. http://www.greatplainslaboratory.com/home/
This is a urine test and will tell you if your children are spilling the gluten and casein proteins into the urine. You will need a doctor's order.

We also did the 96 food IgG allergy testing with US biotek. I think you can do this on your own without a doctor's signature but you may pay a bit more. This is not covered by insurance.
http://www.usbiotek.com/


Our naturopath suggested the allergy testing. You may want to find a DAN! doctor in your area or a good naturopath to work with.
DAN! doctors can be found here:
http://www.autism.com/dan/index.htm

We give probiotics, fish oil and a powdered multivitamin and chewable calcium supplement daily.

Please feel free to email me at teossenkop@cox.net too.
HTH
Tracey
GGG 2/04

Editted to add-The diet gets easier with time. I actually buy a lot at Target, a few things at the health food store and I buy in bulk form amazon.com. My hubby is not exactly on board either but he goes along with it for now.

Hi Liz

In CA its the same ,without a diagonosis one cannot get the services , our ped said usually autism cannot be diagonised b4 age 3 but then he wanted to get my boys as much services as possible just as a precaution ,infact we were given 15 hrs ABA but then my ped asked (thru letter) to increase it to 25 hrs ABA.....so if you can manage to get a letter of recommendation from your ped that might help to fight for services.

the early they get the services the better it will be for them.


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Thanks mdcoolus. I totally agree. If I could only get the so called professionals to agree with me! Unfortunately, our EI system doesn't offer ABA. Only playgroups from what I understand.

Liz~ Proud Momma of BGB trips
Born on June 28, 2007
Lucian 3 lbs 1 oz
Zoe 4 lbs
Aiden 2 lbs 12 oz

Liz,

I think ABA was the single best therapy we did. And we did a lot! If you cannot afford it (it is pricey), look into "The Me Book" on the Lovas theory. He started it and it gives you step by step instructions on how to do it. You can do it on your own too! Even if you start small, anything helps!! Check it out!

http://www.amazon.com/Teaching-Developmentally-Disabled-Children-Book/dp/0936104783/ref=sr_1_4?ie=UTF8&s=books&qid=1222301833&sr=8-4

There are other books on ABA too, maybe a different one you'd like, but it really isn't that hard to do!

Ann

BBG born 7/7/03
33 weeks 3 days

Hi,

I just stumbled on to your post. Can you please tell me what red flags was the doctor concerned about. I have two surviving triplets 10months old (6 1/2 adjusted) born at 25 weeks gestation. I took them to the neuro who specializes in Autism and she is concerned that they aren't really "needy" babies. She said they are very independent and that it worries her. I am very worried now too. The thing is, I raised my boys independent....to self soothe etc. When they would cry, I didn't run to pick them up....there's two and its hard. I would pick them up when I knew they needed it. I would spend time holding them etc, but with multiples its hard to do "one on one". You just can't always. I wouldn't get anything done.

Can anyone tell me what there infants were like around this age?