My goal is to have one place -- and I know some places exist -- where you can have access to all these treatments, where it is not like you have to go and mortgage your house to try one of these treatments, but that you might have access to them free of charge or at a really nominal fee. So I am trying to get some funding for such a place.
A friend of mine has one in Irvine, California, where people can come in and there is a whole room of like 20 hypobaric chambers. Kids get in there -- from kids with cerebral palsy all the way to kids who are low on the spectrum (health care providers think of autism as a "spectrum" disorder). It would also have other therapies and also teach parents to cook gluten-free meals that their kids will actually eat. That is what is missing -- more of a focus on treatment, especially as it pertains to biomedical, and not just always the ABA (Applied Behavior Analysis) model, which works, but some of these kids are sick on the inside and we need to start treating them for that as well.
I think we have a lot more to do in studying the types of treatment that are available. We want people to know that if they want to try something different not to let people tell them it is quackery. That it doesn't work. Find out for yourself.
There is a doctor in Philadelphia that said hypobaric chamber treatment doesn't work. There is no proven science. But while we parents sit and wait around for something that meets their criteria, we are missing time.
We have our own coalition. I think that is why there is so much passion around this topic. When I first started talking about the gluten-free diet, and how it works for me, I immediately got attacked by all these pediatricians: "There is no proof of that. That is a celebrity fad diet" like I was pumping TrimSpa or something. All it is is taking wheat out of their diet. I am allergic to wheat. I came up allergic to wheat, so it is not some dangerous thing. I find this odd resistance to talking about treatment as if we all need to be careful. We are not treating them with drugs. There are very few autism drugs that are even available, so it is not like the Ritalin that is prescribed on a daily basis that doctors say fine about. We are talking about really safe treatments that have had some really good anecdotal success with a lot of us moms.
Are there Web sites you can recommend? You have HollyRod.org.
Holly Robinson Peete: The hollyrod4kids site is under construction. There is a little bit about our mission on HollyRod.org. If you send someone there, they can find hollyrod4kids. At this point, we are in fundraising mode. We are hoping to have a HollyRod house, at least one in Culver City, by 2010. We are purchasing the property now, where kids can come and they can get treatment. We have the hypobaric chamber at our house and we are constantly letting our friends' kids get in it. You can go to a hypobaric treatment center, but it is $150/hour. My husband is like, "This is Grand Central Station. We've got to get a building for this."
One of the things you said when you were on Oprah was you need to have support. How can moms find that?
All you have to do is Google autism support. I wish I had that 10 years ago. There are so many blogs and mommy sites that talk about autism. I blog on a couple of other sites, not specifically about autism, but that question comes up a lot. There are a couple of really good ones, where you can have a non-defensive dialogue about what you are experiencing. A lot of times moms rely on other moms to tell them what they are trying, or what they are experiencing with their kids, or how something worked for them, or where is a good place to try this. We get a lot more resources from each other than from doctors and that has got to change.
How do you balance the time you spend with RJ versus the rest of your family? I am sure a lot of moms out there feel guilty about the issue of time management.
The other day my daughter told me, "Hey, maybe if I had autism you would pay more attention to me." I quickly ran for the bottle of wine (joke). No. It is hard, especially with three other kids. The plus side is they are like little therapists because nothing can pull you out of an autistic world more than having an annoying little brother. I find that having more children, and even though it was a hardship in a lot of different ways, has been tremendous for our son. He has been able to have the opportunity to be more social with these kids who are constantly trying to pull him out of that social lockdown jail that the is in. It has been lovely.
His twin sister wrote a book about her experience as a twin and Scholastic is publishing it. It is called My Brother Charlie and it is going to be out this time next year around Autism Awareness Day. They are already ramping up. She is excited that she is going to be, as she says, a published author before she is 12. We are really proud of her.
The short answer to how you juggle it is you just do your best and you don't beat yourself up for those times when it is like, "I wish I had autism, so you would pay attention to me." You just do the best you can. You explain and you have a lot of talks. It becomes easier the more you talk it out. Children really adjust pretty well.
You can mention also that I see every piece of email that comes from that HollyRod site. You can encourage people to send me an email. There is a really high chance that I will be able to respond directly if there are any questions. Then, I have people helping me out with the questions. They can email me from the HollyRod.org Web site. [E-mailing with other mothers] is therapeutic for me, too.
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