Wednesday, February 25, 2009

Rx Autism and Lessons Learned: And how this relates to a Small Faces song

"I wish that I knew what I know now
When I was younger
I wish that I knew what I know now
When I was stronger."

Ooh La La by the Small Faces

This week, my friend's grand son received a formal, medical diagnosis of autism. This news brought a flood of memories of me as a confused, terrified and angry mother of another three-year old boy with autism.

What can I say? How can I help? One way is to send an e-mail with some suggestions of school services to push for, and contact information for local support groups and resources. Done, and done easily. More hard is to try to share with this boy's family the real lessons I have learned in the past seven years. But here are a few things I know now that I wish I knew then:

EARLY INTERVENTION IS KEY BUT NOT THE ONLY THING: Focus on early intervention but don't freak about about it and buy into the idea that there is a finite "window" for effective intervention. Yes, the earlier the better but our kids' brains and nervous systems keep going and growing. They don't stagnate at, say, age five. That said, if you have the resources, pour them into one-on-one therapy NOW.

FOCUS YOUR RESOURCES AND ENERGY CAREFULLY: Understand and accept that there are not enough resources - time, money, family support - to pursue every intervention and approach. If you are a millionaire or living at the poverty line, this still applies. Given limited energy resources, focus on therapies, interventions, strategies that:

- Have research and medical data to back up claims of effectiveness
- Have been around for a little while and have proven effectiveness,
- Are doable without driving you, your child and those around you totally crazy
- DO NO HARM to your child's physical health

Here are more suggestions gleamed from my years in the autism trenches:

DO do your best to tap any and all early intervention programs in your school district and local service agencies. DO ABA, floor time or other one-on-one therapy if you can afford it but not if it causes bankruptcy or divorce. Yes, I've heard stories about this happening. Apply for government support and services - this in some ways is the "easy" stuff.

DO spend energy and effort figuring out communication systems, schedule tools and other ways for your child and you to communicate. Make communication, behavior management and education interventions a top priority and......

DON'T listen to every parent who tells you that a Gluten Free/Casein Free diet "rescued" their kid from autism. Raising a kid with autism is hard enough without trying to restrict your family to an expensive, difficult diet. We tried, and it was a fruitless nightmare. I am clearly biased on this one, but I encourage you to view these type of claims with healthy skepticism.

DON'T Chelate your child's blood - this has little proven effectiveness and CAN do harm (children have died. If you don't know what chelation therapy means, all the better.)

DO, then, read up and understand that autism treatment can be a racket that can cost families financial resources, energy, and hope. Recognize that parent stories and testimonials are not the same as scientific evidence. Check out the web site of the Association for Science in Autism Treatment before getting caught up in "biomedical" or "alternative" interventions.

DON'T spend too much time worrying about and thinking about what "caused" your child's autism. We all think, wonder and theorize about this at first but after a while obsessing about it is counter-productive. It is what it is. And genetics plays a pretty important role, it really does.

People who claim that a certain "thing" caused YOUR child's autism - like vaccines, heavy metals, antibiotics, or something that mom "did" while pregnant are usually the same people pushing unproven medical "treatments." These people don't buy into the genetics thing. I think they are wrong. And who needs more guilt??

DO understand that you are going through a type of grief that, like all grief, will not be resolved overnight. But also understand that if you can't get beyond, or put aside, the "Why" and "Why me/my child?," you can't best move on to what you CAN do and what resources you CAN tap into.

DON'T forget to take care of your self and don't get stuck on the "All Autism All the Time" channel. Yes, it's good to read up on autism, but it's also good to read a People magazine and see a chick flick.

DO pace yourself; you and your family are in it for the long haul so if you get to a place where things are going somewhat smoothly, go with it. Don't create your own problems!

DON'T get caught up with other parents who think that "the school district is evil." Sometimes, parents transfer their anger, fear and frustration about their child's diagnosis onto their teachers and therapists. Been there, done that. Really, for the most part, they are doing their best with limited resources and I've found I get further being cooperative than being a bitch. And trust me. I've been both.

DO bring snacks to IEP meetings, and gifts for teachers and teachers assistants, even if it's just cookies or hot cocoa mix (see the DON'T above).

These are probably all the "do's" and "don'ts" you can absorb right now - but just one more. Look to the moms and dads who are further down the autism road than you are. Try to meet kids with autism who are older than your child, but realize there is such a broad range of functioning.

Always remember that your child and your family with grow, learn and find joy.


Anonymous said...

I agree with the list: especially (and I am paraphrasing here): take care of yourself and your child and other children; don't buy into the school district is evil (honestly they are doing their best and I, too like to do something even if it is just a "I have noticed this cool thing so and so is doing, thank you!"), bring snacks to IEP meetings (they love me when I do that!). Most of all, work WITH your team. You'll get a lot more than if you work against. We all bring our expertise to the table. Also, try to find a mentor.

I also suggest to take a deep breath, if only for a few seconds. This is a life-altering diagnosis. Allow others to grieve. Accept help from others (just listening to you counts!). I have friends who will never meet my son on the spectrum and that's okay, but they listen to me when things are tough and celebrate when things are great. Others may not know how to deal with it.


Carol said...

That's right - I forgot to comment that different people offer different types of support. There are "autism moms" I wouldn't want to go away for the week-end with but provide great support in other ways. And I have "non-autism" friends I just escape and have fun with, and try NOT to talk about Sayer when I'm with them. Both are important.

Anonymous said...

It's so true, though, Carol. I have friends who just 'cannot deal'. That's okay, at least they haven't deserted me (yes, that has happened). Yes, I do understand the ones who have left, also.


Anonymous said...

Before you tell parents to not have their autistic children follow the gluten free diet, make certain the child does NOT have the antibodies to gliadin. If the child does have the antibodies to gliadin, then he/she should be on the gluten free diet. Be careful with the advice you give.

Carol said...

I am not referring to Celiac disease, but more to unproven theories about the role of gluten and casein in the brain and behavior ofpeople on the autism spectrum. That's different.

If a parent suspects their child has Celiac disease than yes,they should get testing from their primary care doctor for that, just as they would if their "typical" child showed symptoms.

Pam said...

Hello friends, loved the blog, Carol. Especially on the eve of my son's 21 year birthday which brings mixed emotions of joy for who he is and sadness from hopes for what might have been had he not autism.

As for diet, there is a middle road. Our son in elementary school seemed to be much better at school on the gluten free/casien free diet but at home we saw no changes. And it was really hard to follow. So, with our pediatrician's blessings, we limit cheese/dairy to small portions and offer alternate sources of calcium and Vitamin D such as fortified orange juice. When/if he has a difficult day or seems tense, we go heavy on the rice, etc. If all is well we relax on the food too. We also stopped medication for facial tics commpletely, this time in consultation with our psyhchiatrist. It is just easier to live with some oddity than to push pills daily. Families can and should explore the treatment plans that work best for them.

Moving on, I cannot thank enough the friends who have older loved ones. When our son was small, we visited a group home and it was truly not awful. They had a pet, a life with choices, and the adult with autism let Geoffrey jump on his bed. How cool is that???

And to end my sharing today, the Vancouver area Special Education PTSA is in dire need of folks to run for officers for next school year. If you can get to Vancouver you live close enough. I believe we are the only group of its kind in the area: teachers, adminstrators, parents, and students together in peace. Most of our coordination is done over e-mail so the face time needed is tiny (1 to 2 hours a month, or less). The state funding for developmental disabilites for the immediate future appears horrible and I believe that makes connections all the more important.

Take care, everyone, Pam

babs m said...

These are fabulous, fabulous suggestions. All of them. It's a scary time, and everything doesn't have to be done at once. The child will grow up and will most likely improve whatever therapies you can deal with. Best thing is to hand them your phone number and say call whenever--because you understand.

Carol said...

Yes, there is the telephone! We do so much over the computer it's easy to forget that there can be nothing like a chat on the phone or out for a coffee.

ByJane said...

Think this is good for MidLifeBloggers????

Carol said...

Yes, Jane, that would be fantastic! I really poured my soul into this one! Thanks! Carol

Palymama said...

I was able to urge my brother to seek a diagnosis for his son at the age of 18 months. He was unable to convince his wife to start therapy for 6-9 months after. Very frustrating when you know SOMETHING should be moving along. Thankfully they have him in a pre-school that is wonderful (along with much 1-1 therapy) He will always be autistic but he's verbal now (wasn't before) and reaches out to people which is so important. It has been a difficult journey that's only beginning but I'm glad I can be some support and I am constantly learning from you strong moms!

Carol said...

18 months; that is good and early. I think I floated down the "River Denial" for a few months before Sayer's official diagnosis. Once I got on board I did 100% and I imagine your sister-in-law did, too. That family is lucky to have you - although "intervening" in another family is always tricky.

Shea's Mom said...

Such great, grounding advise. And, a terrific resource.

Although my Shea does not have the Autism diagnosis, just the developmental delay and severe speech delay, I have to say the Wheat and Gluten free diet really worked for us. Within days were able to see direct change in his focus and verbal ability.

But, your point is well taken. It is dang hard.

Carol said...

I'm glad that the diet worked for you.

Josie said...

My son is almost 11, with Cerebral Palsy and autism (or at least some behaviors on the autism spectrum). He was born very prematurely--at 28weeks, and had many complications that resulted in CP and autism. My main question--he goes through bouts of screaming and yelling and it seems like nothing will get him to stop. Could anyone out there share some techniques that worked for them? Thanks.