Calling all Parents of Autistic Children!!!

[nana053]

Some other resources for autism:

Houston Autism Meetup Group:
The Houston Autism Meetup Group (Houston, TX) - Meetup.com

For people who are interested in Relationship Developmental Intervention

Autism_Relationship_and_Social_Intervention : Autsm Relationship & Social Intervention
and
Autism-remediation-for-our-children : Autism Remediation support group

For Floortime
Floortime : This list will be best for parents and caregivers who are implementing a comprehensive program for their children with autistic

There are also ABA groups and services in Houston for ABA at Shape of Behavior (several locations) and Texas Children's Hospital and other places.

[LAM1010]

Thanks for info on the resources available nan03 (I do apologize if I got your username wrong). However, most of the resources are in the southern or western side of the city. Do you have any info on what is available on the north-side. We might have to move eventually in the next couple of years to somewhere in that arena so that we can utilize more of those resources.

My son was going full time to ABA at Shape of Behavior till he turned 3 this year and started PPCD at Conroe ISD. So far we have been tremendously pleased with his school. He still has his ABA but after PPCD everyday. Unfortunately it looks like Shape wants to move from their location to another one which is going to be quite further & riddled with traffic. The only other ABA place I know in our locality closes at 3pm and that's when he closes from PPCD so wouldn't be able to go there after school. It's just frustrating that because of the proposed move of his ABA, he's not going to be able to get a full 3 hours/day after school because I'm going to have to spend at least 60-75 mins on the total to and fro journey. I'm also looking into finding really good and motivated ABA therapists for in-home sessions.

But I guess, more importantly right now his GI issues are a predominant factor in determining behavior, attending and compliance issues that he's not gaining as much as he could from all the money I'm spending on ABA, speech and OT. And the most of the mainstream GI doctors seem totally oblivious to possible autistic colitis and are not willing to listen, learn or research.

[ayi]

LAM1010,
You may have mentioned this in another blog. I was wondering if you have tried a probiotic for your son. It is worth doing some research and consult physician, if not. My GI doctor and ped both approved of it. It worked wonders for my son. He is in the spectrum. We also had a lot of problems with bloating and constipation. In addition, the GFCF diet, dairy free, soy free, eliminating artificial colors and flavors, genetically modified foods, preservatives, MSG and fast foods. Most of the above is not healty for anybody and sometimes difficult to digest. Initially, the diet seemed to help, but over time he seemed to become malnourished and exhibit more sensory issues. The elimination diet deffinitely seemed to strengthen his immune system and allergies. Finally, we reintroduced wheat occassionally and a few other things just to get something in him. He is a very picky eater and has some oral sensory aversions. We continue to stay free of casein and dairy, artificial preserv., MSG, modified foods, artificial colors, and fast foods. A pediatric nutritionist who is familiar with GI issues may be valuable if you have not already consulted one. We use a few supplements and use hemp milk as a substitute for milk. Things have been pretty complicated, but like many others have stated, you have to do exactly what works for your child. Hang in there! Continue to be patient. I hope this was helpful to someone.

[LAM1010]

Thanks for the info ayi. My son is on a probiotic as well as other supplements. We tried GFCF for 6 months but didn't have much luck with that. He drinks almond or rice milk. It's pretty tough but I am determined to see him through all the stages until we get it right. Thx.

[tscrilla]

My child was in therapy for a while because we thought that it was autism but therapy seemed to help but not a whole lot. So we had them tested (blood work) for any allergies and found out about their celiac disease gene. Once we went gluten free for a week or two our child was doing things we thought we'd never see, riding a bike, saying words, etc, etc. It has been a yr now and we are so pleased with the progress. I truly believe that diet plays an intricate part in our bodies. Check it out, couldn't hurt.

[courtellis]

my girlfriend has a son who is mildly Autisitc, and she has been raising him on her own without help. I am trying to help her out, but I seem to getting in the way. I would like to know where I could get help to learn more about being a parent of an utistic child. I have experience with special needs education, but never been a parent of a child with special needs. SOMEBODY HEEEEELP!!!!

[sara.2010]

Hi LAM1010,

I am a mother of 12 yrs autistic kid. My son had a lot of pain, doubling over and someone trying to hurt him very badly kind of pain comes to mind. We tried to get help, tests for celiac disease, endoscopy etc were done. First of all none of these help came easy. Our dictors didn't had a clue about the problem and after all the above tests, blood tests and poop tests ruled out anything was wrong they stopped listening and thought I was crazy or something. Only my husband and mostly I know what he/we went thru. We went to the best child specialist for GI in chicago out of pocket and a six week course of prescription ZANTAC fixed the problem. Thanks to the doc and to god my son could sleep thru night. What was happening with him was acid reflux and was aggravated because of late dx. Hope this help u and other parents going thru this issue.

Originally Posted by LAM1010

Ok. So I have decided to give it a shot and go to Austin. My son is on the Gfcf diet but he still has plenty of gut issues which I think are precursors for some of the behavioral issues. I have decided to see a gastroenterologists who specializes in autistic kids because I can't stand to see him double over in pain or toe-walk to alleviate stomach discomfort. He had issues with C. diff bacteria last fall and his pediatrician decided not to prescribe antibiotics because it would make it worse. He was barely 2 and everythg he ate then went straight through him and came out undigested (sorry to be so graphic).
I guess ABA helps but the child has to feel well for ABA and other therapies to work. Who knows maybe once we get his gut issues under control he might be able to focus and get involved more and possibly start to speak.
And to think that some physicians believe that GI issues and autism are not linked. Maybe not for all kids but for some it is a definite factor.

[LAM1010]

We did try Prevacid (a proton-pump blocker which also reduces acid and reflux) twice a day for a week. That didn't help much but I guess we probably didn't stick with it long enough. Because he's orally defensive giving him meds can be traumatic so we normally try and disguise it in his only source of nutrition - MILK.

Oh! and before I forget, we went through a whole battery of GI tests (endoscopy, uuper and lower GI with follow-through, rectal biopsy) a couple of months ago at Texas Children's Hosp and they found nothing conclusive except that his gut is full of a lot of liquid (for someone who was fasting for about 11 hours from the night before) and the loops of the GI tract are aligned in an unusual way. The GI doctor doesn't know what to make of that so referred us to a surgeon who did a biopsy (check for a nerve disorder). the GI surgeon found nothing and when I called to get the results he was absolutely rude and acted as though I was an ignorant mother who had wasted his time. This is the same pediatric surgeon (at Texas Children's Hosp)who operated on my son and saved his life when he had a bowel intussusception at 3months old but the scan showed nothing and no one knew what to do so he decided to open up his stomach and see what was going on. So I had a lot of respect for him and his judgement until now. I guess all these mainstream doctors are frustrated that they still can't find the answers to the intriguing gastrointestinal issues that plaque autistic children and they are taking their frustrations on the poor relentless mothers.

I was enraged and almost blurted out that I had a doctorate in 2 western countries and was not an ignorant mother suffering from Munchausen Syndrome but I had to calm down and remember that this was not about me but about my little boy and I refused to be distracted by his bigotry.

So I guess now I am a bit cynical when I'm told Texas Children has the best care for autism kids. I would say they have relatively good care depending on whether they have answers for your problem. And before you all think that I'm generalizing, this is my 3rd encounter with a mainstream GI doctor/surgeon who seems to think that if Miralax, probiotics, pediasure and GFCF diet doesn't work then the fault is mine!!!

[LAM1010]

Just wanted to throw this in for those folks with autistic kids or kids with sensitive stomachs. Try Vital jr. It's a new product from the makers of Pediasure but the fats, carbohydrates and proteins are broken down already and easier to digest. PM if you have questions. I am trying to provide feedback for similar Houstonian Moms who are seeking solutions (biomedical, diet and therapy-based) inthe Houston area for their kids.

[LAM1010]

Hello,

It has been a few months since I posted anything related to the subject matter but I do a few questions and would appreciate some feedback and insight.

Dilemma: We are now considering relocating from the Spring/Woodlands area to Katy in the next 6-7 months. The only reason for this proposed move is because it appears there are more services for autism in that area than there is within our current location of Conroe ISD. We have heard some good things about the ECAP program in Katy ISD but I have been unable to find anything specific about which schools offer them and how thorough is the program.
We have visited the Katy area a lot in the last few weeks viewing homes. We like Westin Homes style of property but lot sizes seem really tight in the area. The fence line for most of their homes was only about 4-5 feet from the house. We live currently live in a great property which we purchased new 5 years ago and has even appreciated a bit since purchase. The fear that if we move to the Katy area, we may end up having to settle for lesser home which would be fine if we could live close to one of the best elementary school with quality autism programs. On the other hand, if we make the move and find that for the most part, what the public schools offer isn't all that then we would have lost out.

My son is currently 5.5 years has been in PPCD since he was 3 years and ECI from 16 months. He is a bit more verbal now but hasn't got much of spontaneous speech or language. He is very hyperactive and we have been potty training for about a year now. He is eating much better now (we attended a feeding clinic in Austin for 5 days last August) and his GI issues is on the mend. He is in a full day ABA program for the summer and gets speech three times a week, also for this summer period. He's made some modest gains which is more than he did in PPCD for the last 2 years. We aren't sure what to do for the fall as he starts kindergarten and we are debating whether to continue the full day ABA and speech for another year. I also have a 4.5 year old son who is typical.

I guess I would like to know if anyone can name a few elementary schools in Katy ISD which are so good for autistic kids that it is worth moving to the Katy area. I would like him to eventually go to Monarch also if need be but the fees are quite expensive and I want to be sure I can afford to pay for at least 2-3 years straight before sending him there especially since their hours of operation and required parental involvement makes it difficult for both parents to be working parents.

Thank you in advance for your insights.