new to autism

[Anonymous]

my DS was evaluated for autism, and he seems to be within the spectrum, the Dr (at Rockville children medical center) said that he had 3 of the major signs, a letter will follow, recommended us to the infant and toddler program for evaluation, but as you can imagine, my mind went blank.
he just turned 2 and is such a sweet little guy. his speech is delayed and there is a regression, that was the part his pediatrician wanted to evaluate and the therapist saw other signs, and here I'm writing this post. I think that I'm over the shock, anger, surprise and etc, there are too many feelings involve but now I realize that I must leave all of that behind and start doing some serious research and ask for help. everything seems so vague, where to start? I have no family in town, DH works crazy hours but will have to cut them, I won't be able to handle all this on my own. feel so tired already and nothing has started yet.

any light, words of encouragement, information, anything, would be greatly appreciated.
Thanks.

[Anonymous]

Call PEP or check them out

http://www.parentencouragement.org/

They offer special classes for parents of special needs kids and there is a teacher there, Sue, who is EXTREMELY knowledgeable about autism and how to parent it.

Whatever you do, get support for yourself, get a second opinion if you feel like it is needed, and fight like hell for your kid AND your marriage. So many people are going through this...there is tons of support if you look.

Best of luck and prayers to you. He is little, he has a good shot at getting through this...

[Anonymous]

Big hugs to you and welcome to our world. My son was diagnosed at 2 as well, but it wasn't a major shock. Although he is high functioning, I suspected autism when he was just 4 months old (call it mother's instinct) He was developmentally delayed from birth and still is. He is in an autism program and is making huge progress. I think what is most frustrating is the whole "Ok so where do I go from here" part. You want to help and you want to see your son happy, but you're not sure what it takes.

I would start by lining up a series of experts. Find Doctors that specialize in Autism, get an extensive neurological evaluation to rule out other comorbid conditions. Get an MRI, an EEG, to cover your base.

Then look for therapists, typically occupational therapists and speech therapists are the minimum. Make sure they have experience with children on the spectrum. Your child is too young to actually tell for sure where he falls on the spectrum, and that's a good thing. Early intervention is key. My son was non-verbal until he started speech therapy. He now speaks in sentences, and although he doesn't talk like your typical 3 1/2 year old, he can express himself and learns day by day how to function in a world that is unlike his own world.

If you are in a county with early intervention programs, contact them. If you are in DC, brace yourself, that's a fight in and of itself, but you have to start creating a file for your son to be able to get him the maximum services. Whether that is private or public is up to you. We started private and are now mostly public with private supplementation.

Study your son's behavior. You will hear terms such as sensory integration, cognitive development, auditory processing, speech processing, etc etc. The only way I survived was by me obsessing over trying to figure out what it all meant.

Talk about it openly to family members and particularly to your husband. Hug each other, cry together. Lord only knows how often me and DH went from bitterly arguing to just crying.

And lastly never forget one thing: Now is the time to make a difference in his prognosis. Nothing is lost with this diagnosis, you do not have to give up your dreams of what your son will become. You may have to adjust them as you go along, but it will be fine. Every milestone he reaches should be celebrated, because you cannot take it for granted. My son is my hero, he is the biggest fighter I know.

You will get through it. You are your son's best advocat. Good luck!

[Anonymous]

OP here, thank you both for your kind words. you have opened new doors to me and to my DS. I must start doing something asap. we live in Fairfax county and will take advantage of their services, already have two appointments schedule. we started speech thera. a month ago (private, insurance seems to be covering now...) and he is doing very well, the first 2 sessions were hard, new enviroment and etc, but the last two sessions were very good.

Do you mind contacting me by email? I would appreciate advise, help whatever you can spare at any time. My email is: [e-mail]

THANK YOU!

[Anonymous]

Hey, there --

Also check out the work of Communicating Partners <http://jamesdmacdonald.org/Articles/MacDonaldStart.html>.

There's a lot of optimism there and the advice -- though not always well-edited -- is spot on. I'd never realized how many people talk to children in an interrogation rather than a conversation until I started reading his material. How's a kid going to learn to talk if all they're asked is questions?

[Anonymous]

My son has Autism and was diagnosed at 18 months of age. He is now 2 years old and is making progress. Luckily, you are in Fairfax county!. They have a PACS preschool program which starts at 2 years of age and is ABA based. I have heard wonderful things about the program from other parents. I live in Alexandria so our program for Autism preschool does not begin until 3 years of age. We are doing home ABA with ALC out of Falls Church and private speech and OT ( at home) with Spectrum Pediatrics. The early intervention in our county would only offer 1 hour/week of therapy so we opted to pay for our own services.
Gook luck with everything and feel free to email me if you have any other questions. [e-mail]

[Anonymous]

Try this link for a new diagnosis kit for parents.


http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf

[Anonymous]

Anonymous wrote:OP here, thank you both for your kind words. you have opened new doors to me and to my DS. I must start doing something asap. we live in Fairfax county and will take advantage of their services, already have two appointments schedule. we started speech thera. a month ago (private, insurance seems to be covering now...) and he is doing very well, the first 2 sessions were hard, new enviroment and etc, but the last two sessions were very good.

Do you mind contacting me by email? I would appreciate advise, help whatever you can spare at any time. My email is: [e-mail]

THANK YOU!

After years of struggle diligent peristent parents were able to activate FCPS. There are several sources where you can connect with parents. Join these groups:

http://health.groups.yahoo.com/group/ASA-NV/
http://health.groups.yahoo.com/group/ASA-NV/files/
http://www.autism-society.org/site/Clubs?club_id=1200&pg=main
http://www.poac-nova.org/

In this current budget development process be active and vigilant.

[Anonymous]

We embarked down the same path in July. I found the first 100 days guide from the autism speaks website (link already posted) very useful. I also found Stanley Greenspan's book "Engaging Autism" a helpful guide to understanding social emotional development and how to engage my daughter. We've been using Greenspan's Floortime/DIR method on our toddler since August to great effect.

[Anonymous]

I'd like to offer another perspective. We've used the biomedical approach to treat our ASD child. DC is "off the spectrum" thanks to the GFCF diet and supplements prescribed by our excellent DAN doctor (google "Defeat Autism Now" and look on Yahoo Groups for GFCF diet) We never went the ABA approach, although I know parents who swear by it. We felt biomedical was the way to go and it has worked. (see Autism Research Institute website http://www.autism.com/).

We also stopped vaccinating, which is such an emotional issue that you will hear vitriolic opinions against our choice, but we firmly believe it made a difference. DC went from mildly autistic to completely typical, a good student in regular school with no support. In preschool we were told DC would have to be in a special-needs kindergarten and would probably never progress to a regular classroom. We received no support from teachers and other non-DAN parents who don't believe in the biomedical approach.

BTW, before DC's diagnosis, we were as pro-conventional medicine as can be. Our Yalie pediatrician was our goddess, until she turned us out of her practice for deciding not to continue vaccinating our ASD kid. She suggested ABA and psychotropic medications to control DC's tantrums, but we politely declined. After we eliminated milk from DC's diet, all tantrums stopped. We knew we were on the right track and have not looked back. Conventional medicine has its place, but I no longer swallow its dictums whole. We believe vaccines and antibiotics prescribed by aforesaid Yalie doctor (an intelligent and well-intentioned woman) caused DC to slide onto the autism spectrum. All her Ivy League training and high IQ could not get him off the spectrum. Our DAN doctor did, and for that I am forever grateful.

The special needs coordinator in our school district called the DAN approach "controversial" and doctors say there's no "proof" it works. If you must have placebo-controlled, double-blind studies to back up every choice you make in your child's treatment, then DAN critics are quite right, there is no "proof" because no one has done the studies. But I'm not waiting for studies. If biomedical approach works for a tiny fraction of ASD kids, then it works, period. There's no risk to taking milk and wheat out of your child's diet (despite what the dairy industry will tell you), and everything to gain if you are so lucky (as we were) to have a child who responds to this approach.

Read Jacqueline McCandless's "Children With Starving Brains" (buy it through her website or on Amazon) for a more detailed explanation. Fortunately I have a (very conservative) relative with an ASD child who steered me onto this approach, so I had support right from the beginning, when all the world (especially aforesaid Yalie ped) seemed against me. Relative's child has not responded to the GFCF diet, but has responded beautifully to other biomedical interventions.

Early intervention is key, so after you've gotten past the shock and yes, grief, start making changes. I wish I'd started sooner because my child would have recovered sooner, but I was ignorant, and spent precious time going around to various therapists (ot, pt, psychologist, social worker, speech therapist, neurologist, etc.). Each specialist we told us our child needed that particular person's (costly, not covered by insurance) therapeutic approach. We did speech therapy, which was very helpful, and allergy treatments (food and environmental allergies caused DC's ear infections).

It's a long, painful road, but don't believe anyone who tells you autism is not curable!! It is. DC is proof! Ask thousands of DAN parents, and they will tell you.

[Anonymous]

I also have a child who was "mildly autistic" who has made huge progress. His diagnosis is now Aspergers but many would look at him and say that he is no longer on the spectrum -- he has friends, is in a fully mainstream school, etc . . .

We got him there through all the traditional therapies. I have to disagree strongly with PP. Some kids just do better than others, my son being one of them. Each child on the spectrum has his or her own developmental path and some have an explosion of development between th ages of 3 and 4. We choose science and the science does not support the alternative approaches. (Of course, if the problem was an allergy and not a true ASD, then of course changing diet would have changed everything.) And I did notice PP did some traditional therapies, so perhaps that was what worked so effectively. Not vaccinating your child exposing him or her to a risk of death, and based on what? NONE of teh science supports this approach. Most of us with kids on teh spectrum will say there was something wrong before they got their first vaccination.

[Anonymous]

http://www.cbc.ca/health/story/2007/09/06/additives-lancet.html?ref=rss

http://www.autismvox.com/new-study-on-heavy-metal-toxicity-and-detoxification-by/

http://www.mothering.com/sections/experts/arranga-archive.html

http://www.ageofautism.com/2008/03/how-you-can-hel.html

http://www.generationrescue.org/

Keep an open mind, don't panic, read as much as you can, don't succumb to emotion, and make decisions based upon the best interest of your child. Each child is different, and what works for one may not work for another. You can't control the genetic part of autism, but you can control the environmental factors -- diet, medications, household chemicals, etc.

[Anonymous]

My son was diagnosed 5.5 years ago, and he is now mainstreamed - he has progressed more than anyone thought he would. He had loose stools, and we ended up finally getting him treated for fungus and c-diff. His stools improved immensely (he went from accidents to fully potty trained in 2 weeks), and his behavior became more even. So, if your child has bowel issues, I suggest looking into this (a friend of a friend's son benefited from this as well). We went to a pediatric GI at Children's (we did not go to DAN doctors).

That said, I don't believe any single approach is the answer - for example, in my son's case vaccines had nothing to do with his ASD (he had symptoms pre vaccine). We provided a lot of therapies for my son as well - speech, OT, and a social behavior approach (she is not a traditional play therapist, which I mention because, in my son's case, the Greenspan / DIR approach was the absolute opposite of what he needed). Also, Sunrise Guidance in MD helps families put services together - I highly recommend checking out the website.

Infants and Toddles in MD was very helpful.

And your child has been assessed early which is extremely hopeful. It really is. My son had stopped talking, wouldn't listen to a word, etc., and now he is mainstreamed, with support.

Take care.

[Anonymous]

To the PP 22:08. You said your son was diagnosed 5.5 yrs ago and that he is mainstreamed, but you didn't share how old he is now. Do you mind telling?

[Anonymous]

He just turned 7. He is in the first grade at our local ES in MCPS. He was diagnosed at 18 months.

If you would like to email or talk, I am happy to offer any words of support, or just to listen. The main thing is that having your child diagnosed so young makes a huge difference. He is lucky to have you as a mom!!!