Our son, who is just shy of 3 1/2, was just diagnosed with "mild" autism, as well as SPD/SID (which we've known about for several months). At the moment, I'm feeling confused, overwhelmed, and both sad and angry for my little boy. And I have no idea where to turn next.
Almost a year ago, we started noticing "differences" in our son, aside from a speech delay. My husband took him to the pediatrician last May with a list of things we were concerned about (I had a new job and couldn't go with); the pediatrician didn't even look at the list, just told my husband that she dealt with "behavioral" issues at the three year check up. I spent the next few months battling my family (including my husband), who all seemed to think our son was a "normal" almost 3-year old. Some friends finally urged me to follow my gut, and we had him evaluated by AzEIP in August. They seemed to think there were definite signs of sensory problems, if nothing else, and referred him to our local school district, who evaluated him in October. They found the same thing, and we enrolled our son in an integrated preschool program. We were given no other information, resources, anything, and so I tried to research as much as I could when I was able. Someone here actually gave me the name of the Melmed Center, where we had to wait for a few months to get in. We finally had his evaluation last week, and they confirmed the SPD/SID (primarily proprioceptive, with some tactile and olfactory), as well as "mild" autism. We were told to enroll him in the Jump Start program at SARRC, which would cost us $300, and they'd see him again in two months. We were also told that he would need additional OT and ST. We also applied with DDD, though are pretty certain we won't qualify for the long term care program. Well, we got our packet from SARRC, and the program does NOT cost $300, it costs $2000. There is nothing we wouldn't do for our son, but the fact of the matter is, we just do not have thousands of dollars to pay for all of this. And of course, our insurance won't cover any of it. I'm feeling so lost right now, and I guess more than anything, just needed to get some of it out. Thank you to anyone who made it through my long tirade!
First off, let me just say
First off, let me just say that you are not alone. I know that's not much of a reassurance, but my daughter also has a form of Autism called Aspergers (autism to a slighter degree) and there are local support groups that can help get you started on treatment and how to parent better for them...try this link http://www.arizonaautismsupport.org. It's an Arizona support group that helps on the "what now" questions. I would also consider going to a different pediatriction after this. Mine did the same thing. My daughter was fully talking, functional and then around 2 years old totally regressed. When I asked about it with my doctor she told me that I shouldn't worry and if it was still a problem at 4 we would redress. I didn't even get a diagnose until she was 5 and in Kindergarten. Good luck, treatment is expensive, but the bright side is early intervention can help tremedously. My daughter is 7 and besides not being able to understand certain things she says and SOME behavorial issues (not very much at all and the support group will help you learn what to do to make them better) most people wouldn't know she has asperger's at all.
"It's not to late to become who you've always wanted to be..."
I really hope that life gets
I really hope that life gets better for you.. I'm new to this site and not sure if this is allowed, but I know a friend who's son was diagnosed Autism and had unbelieveable results with a natural product. If you are interested please feel free to contact me at
Laurie26ann@hotmail.com and I will get you this information
Again this is all natural.
Blessings to you and your family
"Do not withhold good from those who deserve it, when it is in your power to act" Proverbs 3:27
I do not have much advice
I do not have much advice for you but just wanted to say I'm sorry you are going through this. I hope you are able to find the support you need for your son. I beleive Jenny McCarthy has a new book about this and her struggle with her sons diagnosis. Do you think your son differences are in anyway related to vaccines just wondering because you hear so much about a link. Again, best wishes to your family!
Having a son who has spent
Having a son who has spent the past two years (age 2 to 4) in speech therapy, occupational therapy and physical therapy ...we do it all, every week, I can say wholeheartedly that the therapy can do wonders. I never thought it was a waste of time.
For us, it was worth every penny - as I believe it has changed the quality of his life. He really is "better" from doing ST, PT and OT every M/T/Th. It consumes your life a bit, but my life was already consumed by my kids, just now in a different way.
I cannot say enough great things about the staff and services at Scottsdale Fiesta Pediatric Therapy (Tatum/Shea) - "in network" with BCBSAZ. We went there for both PT and OT (also a lot of proprioceptic issues) - though they also do speech there. We did speech somewhere else, at Pediatric Speech and Language Specialists (also "in network" with BCBS). The folks at PSLS do tons of autism work and the owner, Anita Werner, met with us for an initial evaluation and a treatment plan recommendation - and her team there has been one of the greatest blessings in our family's life. While I live near PSLS, most of the patients come from far away in the Valley - which says to me that while there may be closer services, they go there for the quality.
Good luck!
Oh - both places can tune you in to a lot of support groups/workshops/readings/etc etc.
Happy2BMommy, is a stay-at-home mom who just turned 40 (argh!) with a 6 yr. old daughter and a 4 yr. old son, and is a discussion leader for arizonamoms.com living in Scottsdale.
My son was diagnosed with
My son was diagnosed with moderate autism just after his 3rd birthday. Your story sounds so similar to ours. First off I agree you should find a support group that can guide you through the ups and downs. There are so many great groups to chose from. Second I think you should definitely go through Jump Start at SARRC. I would call and and ask to talk to Janet Kerwin. She can explain the specifics but the $2000 is not what they charge the families that is what it costs them to run the program. The $300 sounds right BUT they also offer financial assistance to families that can't afford it. I have gotten assistance from them in the past so I know they won't turn you away because of money. I also know that there is a group that helps families cover the cost of therapies. We started getting therapy at Scottsdale Fiesta and they gave me the paperwork to fill out. The group is C.I.T.T (or something like that). Jump Start was a huge help for us. We weren't qualified for ALTCs yet and we wanted to start ABA. The jump Start program taught us how to work with our son using ABA. We still use the techniques that we learned in the classes. Therapy has also been a must for our son. We are now qualified for ALTC it was a long hard process but well worth it.
When we first began our journey our son was non verbal and very aggressive. Most days we would spend crying together. I didn't understand him and I'm sad to say I didn't like him very much. Today he is funny, happy, and crazy smart. He goes to a regular Kindergarten with a one on one aide. He has friends and LOVES to play outside. None of this wouldn't have happened if I didn't fight for every little thing. It's not easy but it is so worth it.
I would be happy to answer any questions about Jump Start or about DDD and ALTCs if you would like. You can email me at steff_smith2005@yahoo.com
Good luck with everything!
Hello. I hear your
Hello. I hear your frustration, sadness, and anger. I encourage you to get as many opinions as you need until you feel reassured that you have a manageable goal setting plan for your family.
It is despicable that allopathic medicine does not cover medical expenses. Here is a link to an interview with Jenny McCarthy. Her son was diagnosed with autism. Wth early intervention, diet, and lots of internet research she was able to make dramatic strides with her son.
http://www.pr.com/article/1076
SARRC is a wonderful resource however, they do NOT include nutritional therapy. This should not be neglected. Jenny also has written a book about her investigative journey with her son.
http://www.amazon.com/Louder-Than-Words-Mothers-Journey/dp/0525950117/
Every child is physiologically and metabolically diffferent - developmentally delayed or not.
My best to you and your family.
Jan Katzen-Luchenta
Author - Nutrition for Learning:Feeding the Starving Brain - Foresight nutritional counselor- Montessori educator - www.nutritionforlearning.com
Thank you all so much for
Thank you all so much for the support and information!
We very much think the Jump Start program would be beneficial, but the paperwork we got said it would cost $2000. I'll definitely give them a call, though, and see what we can work out.
Our son is so incredibly smart, and yet he struggles so much with certain "normal" daily activities. Though his speech improves daily, it can still be "spotty", so communication is always an issue. And his social skills really need help; he used to not even want to interact with other kids at all. Now he does, but he can't usually communicate that with them. On top of that, when he's around a lot of kids he can get overstimulated, and can become aggressive. We've been feeling like we can't even take him out in public (at least to parks, busy playgrounds, etc) because we haven't been able to find a way to "control" it. Like every parent, we want the world for our son, and have been in such a panic the last week, wondering how we could provide all the services for him that he needs. But somehow, some way, we're going to get through this!
Thank you all again!
I have a student who
I have a student who struggles with social issues. He is a bit younger than your son - however his frustration and lack of communication skills invariably manifests in aggression.
This child becomes overstimulated and quite overactive - unable to focus for any extended period of time. Behavioral issues follow the inability to concentrate.
I do find this child does better in a smaller group and when napping - in a cocoon-like environment - away from the other children.
I always recommend Nordic Naturals children's chewable DHA which contain highly unsaturated fatty acids that help with brain function, vision, attention, and mood. I have seen great improvements in the past with children who struggle.
Jan Katzen-Luchenta
Author - Nutrition for Learning:Feeding the Starving Brain - Foresight nutritional counselor- Montessori educator - www.nutritionforlearning.com
Raun D. Melmed, M.D., of the
Raun D. Melmed, M.D., of the Melmed Center in Scottsdale has a one month program and it's intense but you will see HUGE changes in the 30 days...
My best friend just went to a autisum conf. in Dallas this last Friday and heard him speak. I told her about your post and she said I had to get back online and give you this info. Her husbands a DR and she has her master's in speech patholigy. Their son has autisum and Raun Melmed literally brought her to tears. He is amazing in his thinking and approach! I'm pretty sure she is bringing her son here for the month program.
God Bless and what a very lucky little boy to have YOU as his Mom!!! I know not all moms with little ones that develop autisum are as dedicated to them as you seem to be... Also have you tried the diet? That really helps!
Elizabeth is a discussion leader for arizonamoms she writes about everything from her needing mommy advice to crazy and silly stuff that happens. She lives in the West Valley with her husband and 3 children.
Thanks, Diva:) Dr. Melmed
Thanks, Diva:)
Dr. Melmed also works with SARRC (I believe he's a co-founder and on the board?), which is where we're hoping to take our son for the one month Jump Start program; I wonder if this is the same program your friend is referring to?
We completed our application for the program over the weekend. Now all we have to do is figure out where we're going to find the $2000 the program costs! One day at a time, one day a time;)
My 7 Year old daughter was
My 7 Year old daughter was recently diagnosed with high functioning autism at the Melmed center in Scottsdale. I have not contaced the DDD or even told her school yet. Like you I'm feeling lost...so you are not alone! We went through years of testing from the school and psychologists, we even saw a neurologist at PCH. We always got the same response..that our daughter had austisic characteristics but she never got diagnosed until we did the ADOS test at Melmed. I hope it's not too late for us. We too are financailly strapped. I wish you luck with your Son's journey. If anyone out there knows of some type of playgroup for kids with mild autism, especially girls, let me know. I live in NW valley but will travel. My little girl really needs a friend.
Does anyone know of a place
Does anyone know of a place that will do the ADOS test for less than $525?
Jennifer is a full time working mom of a 5 year old daughter and 3 year old son.