My 3 Year old son Recently was diagnosed with Autism, WHAT NOW?
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Jill - posted on 02/16/2009
I saw this post and recognized you as another sleep deprived Mom who helped me with my Sleep Issues post. :)
My son Jack was officially diagnosed by our school system when he was 3. We'd had suspicions about his development starting at 18 mos, and we were hyper vigilant because our nephew had been diagnosed with Autism when Jack was 6 mos old. We'd been told by doctor's, speech therapists and Autism specialists that he probably only had a speech disorder, but the school district finally "pulled the trigger" and labeled him with Autism after their screenings. It was a blessing in disguise, because the diagnosis opened up doors for treatment with the school system and it has turned out to be great.
We'd initially started with ECI (Early Childhood Intervention), a federal program available in most states. They were still thinking Speech Disorder, and their involvement ends at age 3. Their biggest contribution is their ability to get a 3 yr old started in the public school system's program. They have to be your entry, or at least that how it is here in Texas.
If the school system gets involved, your child can go to PPCD- Public Preschool for Children. It helps a variety of special needs kids starting right on their 3rd birthday. My son goes to a PPCD-Comm (communication focused) class and he's in his 2nd yr there. He has 3 other classmates- all on the spectrum, and he's given an ABA based education that is highly personalized.
We also supplement PPCD with speech and occupational therapy to address his sensory integration issues. Unfortunately, our health insurance is flaky about whether they want to pay for speech, which is just stupid, but that's a whole other post!
I didn't use supplements, or special diets. I researched DAN! therapies, but chose not to do it because he was responding well to school based therapies. I know some people swear by supplements, diets and the Dan! protocol, it all just depends what works for your child and your family.
We did go to the Neurosensory Centers of America, and he received a course of steroids and antibacterial meds. Their theory basically says that a lot of ASD symptoms stem from an irritation in the nerves of the ear. Heal the nerves, end the symptoms. He improved after the therapy (and it was covered by our picky insurance), but we're not sure if he just outgrew some of those symptoms.
Phew, this is a novel! The best advice I can give you is to take your time and research your options before you start him in a program. Early intervention is the key, but this is a marathon, not a sprint. Pace yourself and take care of yourself. You've just been given devastating news and you need time to adjust and to "circle the wagons" of support, so to speak.
You're on the right track by getting your son diagnosed and asking for options for getting him treatment. What all kids need is a parent in tune with what they need and you're doing that. The right therapy will come along and you'll know it by how your son responds to it and how well it fits in with your other family demands. Hang in there. It does get better.
Jill - posted on 02/17/2009
I'm happy to hear your son will be starting in a program. I've been at home with my boys too, and couldn't return to work because of my son's hectic schedule. If you come up with a great work-at-home idea for ASD Moms you'd make a million! :)
Kim - posted on 02/16/2009
There is a great deal of help in the autism spectrum related to nutrition. I am with Reliv International (veg. blend)and was just at our Ft. Worth Conference Feb 12-14. Many special needs children especially with autism, ADD and rage disorders are getting help with these products. I spoke with nurses, physicians, moms of special needs and family counselors.
I would be happy to help you learn more about this. Our job as distributors are to just educate families. Then if you are interested in the products, they are drop shipped to you by the company.
I was a Dental Hygienist for 30 years and left to give hope to others because of the results my family recieved. Feel free to call me. 937-901-5454 Kim
Wendy - posted on 02/16/2009
Early Childhood Intervention Is great I have twins one has Autism and one has PDD and Anger Management problems. They both has a TSS and a BSC who help out a great deal. When they frist got started with ECI they got me incontact when a com to give them Speech and OT and PT which helped a great deal. Hope this helps in some way have a good day and keep your head up.
Lori - posted on 02/16/2009
Thank you Thank you thank you!
I really appreciate your reply. It really made me feel better! Zach was in the school program here. Minnesota..They stoped coming to our home when he turned three. They wanted him to go to pre-school with 15 mainstream children and 5 special ed children with 1 teacher helper. The hospital pyschiatrist said he was not ready. In my gut I knew she was right.
One of the biggest hurddles we have right now is I am not able to work. I have to bring Zach to therapy 4 days a week. Any suggestions for working at home?
A good thing is Zach has been accepted to the Fraser Center here in Minnesota :) So maybe things will start getting on track.
Boy this is a lot of mumble jumble huh? thank you again and please keep in touch and Good luck to you and your family and God Bless! Lori
Carolyn - posted on 02/16/2009
Thanks Saadya. I sometimes forget that our systems are very, very different. I have chatted with parents in the US, however, with special-needs children what have had contact with social workers in much the same capacity as ours, without any negative comments coming from the parents. Maybe it varies from state to state?
I know in the states there's also something called DAN (Defeat Autism Now!). They apparently have had much success in treating Autism. I've read their website and it has lots of useful information (a lot of our programs up here are based on DAN).
Saadya - posted on 02/16/2009
Being an american mom I wouldn't suggest getting a social worker. Our system isn't really set up to help us. :(
Start learning about and incorporating a GFCFSF(gluten,casien and soy free diet). Limit sugar, use Agave or any plant based "sugar". Look for a DAN! doc in ur area, you might have to go out of state(we do). You must get your childs gut healthy before you start to chelate. Chelation will get out the heavy metals and help heal your little one.
JOIN my autism awareness kentucky site on here!
I post tons of helpful info.
Best of luck
Carolyn - posted on 02/15/2009
I'm never sure if it's terribly frightening, or a terrible relief, when you finally get the diagnosis. I'm still working that out.
The answer to your question really depends on where you live and what services are available to you. I live in Canada, and the province I live in has something called Children's Special Services. It's essentially a group of social workers that works exclusively with families with child with special needs, and they help the families access the services they need. We were already involved with them before our ASD diagnosis, as my daughter also has a severe form of epilepsy since she was 7 months old, and we accessed services for that.
When we got our ASD diagnosis, the Child Development Clinic (who made the diagnosis) provided us with information regarding our options for where we live. In our case, we investigated and eventually placed our daughter in ABA therapy (Applied Behavioural Analysis). There are other therapy options available, including RDI, Playtime/Floortime, and special preschools.
We are very pleased with ABA, and have met a number of parents in our community with special-needs and ASD children. That has been a great source of strength and encouragement.
Depending on where you got your diagnosis, check and see if there's a social worker available to help you with the process of deciding what to do next. I know it's scary getting involved with workers, as we always think of them as the people who come and take your kids away, but they really are there to help families. I've developed a really good relationship with our worker over the years, and I'm not afraid to tell her when we're having trouble and feeling overwhelmed... she knows that it means that our needs as a family are NOT being met and will help us out, getting us more services, referring us for counselling, getting us funding for more respite hours, whatever we've needed.
It's a time of transition for you and your family. The best thing you can do right now is arm yourself with information. Just know that the earlier the intervention, the better the results tend to be. Depending on where you live, the cost of the interventions can be prohibitive; we've been very blessed that we live in a province that has one of the best-funded ABA programs in the WORLD (they supply the staff, the technology, the training, etc etc etc. I provide space in our home, some office supplies and toys, and some time).
Good luck and God bless. It's an interesting road, but with a little luck and faith, there is light not only at the end of the tunnel, but all around you too. :)
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