Sunday, February 08, 2009

My Tips for Parents Just Recieving a Diagnosis

Several times over the past couple of years, we've had friends contact us, and ask if they can give our information to a friend who has just recieved a diagnosis of autism for their child. I guess that means we look like we are doing okay, so I take this as a form of praise of how we function as a family.




After writing this letter several times, to those several different families, I decided that I could just as easily post it to my blog. And if others happen upon it, and find it helpful, all the better!

Okay, so we have three kids, two of whom are autistic. But, before you feel sorry for us, know that, yes, it's been difficult at times. But it's probably not been as hard as some would imagine. I guess I've learned that perspective is EVERYTHING, and I have always felt so lucky for all that we have and are, that I don't focus so much what isn't there.




My husband and I are very good at working as a team together. I'm The Wildfire, out there surfing the web at all hours of the night, looking for the latest research and therapies, and of course I'm also the Chronic Worrier. As a counterpoint, my husband is the Wet Blanket, keeping it all in perspective and working to be the Sounding Post of Reason ("No, that therapy sounds like crap, but I get why you are excited about this one" or my personal favourite "Put DOWN autism book...step AWAY from the Autism Book."---Spoken with the same intonation of the 'Drop The Chalupa' Taco Bell Ad from a few years ago). Very occasionally we have switched places, when Hubby comes at me with lots of worried questions and observations. THAT was disconcerting, I can say--to have to be The Voice of Reason, but nevertheless, it all works out.

There are so many parents who have it so much worse than us. That being said, I know it's tough and I would not wish this journey on anyone. It's just so full of Unknowns, and that (for me) is what is so terrifying.

Okay, so what advice can I give you to help you guys? As I look at this letter, I realise that it's huge. Feel free to pick and choose info as needed. I tend to sound pedantic and From the Soapbox. I'm sorry about that. Please know that I mean no offense. I'm just a passionate soul, especially when it comes to my kids.

1. Don't fear the Diagnosis. It's just a label, and it will get you services. It will open doors to therapies that you (and your whole family) will need. I used to refer my boys as "On the Spectrum" all the time, or as having "High Functioning Autism". Now I just call them little boys with autism. There is no one path that kids with autism take. I've met kids as teenagers who are really cool and collected and wonderfully quirky, who were diagnosed as classically Autistic (low functioning) as little kids. Conversely, I've also met teenagers and adults with Aspergers or PDD-NOS that would drive me absolutely NUTS to be around, they were so controlling, yet they were always labelled as High Functioning and Very Intelligent as little kids, so everyone assumed they would be fine. The label means nothing beyond getting you services now, so don't waste time and energy fixating on it.

2. Find a Parent Support Group in the county where you live. This has been the single most valuable resource to me in navigating the Byzantine health and education systems in, our former home state of Pennsylvania, and I'm sure it's no different wherever you live. There are so many parents who have walked the path you are on, probably not far from your house. Although their kids are likely VERY different from yours, you will be able to benefit from their wisdom, experience, and most importantly, you will quickly learn what services your county and school district will pay for and what they won't. You will also learn how to get certain therapies and what works for others. These therapies may not work for you, but information is your friend.

So, ask around. Pediatricians might know about these types of groups. Special Education teachers at most elementary schools might know. A therapist in the Early Intervention System, or Service Coordinator. Find out if there is a Yahoo Message Board Support Group for your area. Sometimes local churches host these meetings. Face to face support groups are the best, but if they have an Internet component, even better.

3. It's not your fault you child is autistic. I know this sounds logical and silly and most intelligent people know this intellectually, but we have a Christian/Judeo Culture that believes strongly that you get what you ask for in this world. Also, it doesn't help that assholes like this spout their ignorant poison into the air like they are the authority on all mental disorders.

I remember vividly sitting with one of my son's Speech Therapists one day. We had been seeing her for several months at this point, I think he was 2 1/2 years old. Anyway, I must have made some sort of self deprecating comment about my deficiencies as a parent, and she stopped working with Kiki and looked at me.
"Wait a minute, you don't think that you did this to your son--You don't think that this is your fault, do you?" she asked. I tried to wave her off, but she was very persistant, I guess because she could see the guilt eating me up inside. She would not let me change the subject. "I've been studying autism and working with autistic kids for 10 years," she said. "You did NOT make your son autistic. This is not because of bad parenting, or you not stimulating him enough, or anything like that. You did not, could not, have caused these delays."
I started to tear up a bit, because even though I had been working with my little boy and learning everything I could about autism for almost a year at this point, she had clearly hit upon an intrinsic fear of mine. She stopped the session with Kiki altogether at that point and we spent the rest of the hour talking about my guilt and niggling worry that I had somehow done, or not done something with my little one to cause or exacerbate his autism.
I think it's something we, as parents of autistic kids, face at least some of the time, this pressure from society that we just don't know how to properly discipline our kids, as if setting limits and not letting your kid watch tv is the magic cure for autism. It's pervasive, too. Here's Dennis Leary, a comedian I used to love to watch and read, pontificating like some of developmental physician on what the "true cause" the rise of autism is. It's infuriating.

So, while yes, it is true that it's your responsibility that your child is alive, you did NOT make your child autistic. Make sure that you and your spouse have talked about this and are both on the same page, too. Your marriage may just depend on it.

4. You are the expert on your autistic kid. This also sounds like it should be obvious, but it's especially important for parents who are just learning how to navigate the system. If an expert (teacher, medical doctor, psychiatrist, behavioural therapist, etc...) is trying to get you to sign up for a therapy, education plan, whatever, that just doesn't seem right or a good fit for your kid, or even make complete and total sense, and this expert pulls the old "We are the experts--we know what we are doing here" patronizing crap, RUN THE OTHER WAY. Every single knowledgeable professional I've met, be they therapist, pediatrician, teacher, principal, or Indian Chief always comes from the position that no one knows the child in question better than the Knowledgeable Parent. Now, there are exceptions to every rule. There are parents who are genuinely clueless, but I'm betting that you are not one of them. You know you child. You deserve that respect. If you are not getting it, something is off and you need to find a back up plan.

Of course the flip side to this coin brings me to my final piece of advice:

5. You have to make sure that you are the Most Knowledgeable Parent you can be. And this will take some research. I've spent so many hours reading books, magazines, scientific journals. I've gone to seminars and conferences. I've met with therapists and doctors. I've built up quite a database of knowledge of what I think will work for my boys. I've created quite a network of trusted professionals who I consult with whenever questions and problems arise. And I have every confidence that this is what you will do. Perhaps you won't need to do it to the extent that I have. But I strongly recommend that you put the work in on the front end and pull back as needed. I guarantee you, once you have your network there, you will feel so much more confident and knowledgeable when you go into meetings to talk about your child (of course the dreaded IEP meetings come immediately to mind).

What works for us and how it may, or may not apply to you or your child? Please note, that I can only speak from my own experience. I do not believe that you follow our advice completely. But, you have to start someplace, and I prefer to search down paths that others have found helpful.

We use several different therapies with our boys. They go to an ABA based school where they are mainstreamed with a full time teacher as an aid. They are pulled out of the general classrooms about 50% of the time for one on one learning with that teacher. It's ridiculously expensive and it was a compelling reason for my husband to take this work assignment in Canada for the past two years (his company pays for it since the Canadian government rejected my two little boys because they weren't typical, but that's another post for another day). It will be coming to an end this school year when we move back to the USA this summer. We also use a technique called RDI (Relationship Development Intervention) at home. I've included a few of my favorite links below with descriptions of what they are. RDI isn't for everyone.

It's very similar to Floortime in its general philosophy, but with some very specific differences. I've seen some big differences in Kiki in the past year. We are just starting to formally integrate my younger son into the mix.

You work with a consultant with RDI, a certified consultant, whose job it is to help get you as the parent in the right place emotionally and intellectually to remediate your child's autism. I always do a really bad job of introducing RDI to other parents, but I do believe so strongly in it. RDI breaks down the steps to emotional development very systematically. The family works with the consultant, who looks at the child and the family, figures out where exactly the breakdown has been in the child's development, and how to best move him forward. The best part of RDI is that the parents are the therapists, so you find yourself "doing RDI" just about all the time. A big goal of RDI is incorporating the whole family into the process, so you all grow and move forward together.

There is also an online Operating System which you sign onto to upload your videos of progress and work for your consultant to view and critique. In fact, this is the primary way that parents and consultants communicate. I also spend time on the phone or in webconferences with mine. You can also watch videos of other families to get ideas and to watch RDI in action

But there are so many different therapies. There's the Floortime approach, developed by Stanley Greenspan. His book, Engaging Autism: The Floortime Approach to Helping Children Relate, Communicate and Think is pretty good and a great place to start, if you haven't already read it.
ABA (Applied Behavioural Analysis) is the standard of care (as I'm sure you know), with the recommended 40 hours a week. Biomedical is important. As you mentioned you have begun a GF/CF diet. If you haven't read it yet, I recommend the book Changing the Course of Autism by Bryan Jepson It's highly readable, yet very scientifically based and clear on the brain/gut connection. I also recommend finding a good DAN doctor or naturopathic doctor to help with Vit B and perhaps other supplements to help any nutritional deficiencies (DAN stands for Defeat Autism Now---have you noticed the overabundance of acronyms in autism treatment yet?). We actually have just started with this about a month ago seriously (I've dabbled on and off for two years with this but never with medical oversight) and have seen some good progress, especially in behavior and level of attention of both boys at school.

Have I exhausted you yet? I'm sorry if I have. I just wanted to get a good, comprehensive place for you guys to start, if you needed it.
Below are link that I have found to be really helpful. Autism Mommy and Daddy blogs have also been incredibly helpful to me, again with ideas and knowledge building.


The Horizon Developmental Remediation Center
This is a program based out of Michigan, so you would probably not work with them unless you are closer to them. But I love their video and I love the way they describe the philosophy of RDI and they have a great weekly e-newsletter for families with good ideas and articles.

The Connections Center in Houston, TX
This is the main website of the Connections Center which developed and continues to refine RDI. It's full of info and videos. It's a little overwhelming at first, but well worth your time if you find RDI compelling, as I did.

Mom-NOS blog
Fabulous Mommie Blog! She actually turned me on to RDI originally, describing her experiences and understanding of RDI. Love her! Love her blog! Love her son, Bud (not his real name)! Lots of information, if you go the right side bar and look for her keywords, you can find the entries directly relating to RDI. She is also happy to answer any questions you might have.

Jacob's Journey
One of the first RDI blogs I discovered and read all the way through. She does an awesome job of detailing why she came to RDI and how.

Remediating Autism
Found this link on one of my RDI support groups. Looks compelling.

This Mom, one Mom's Walk Through the Tall Grass
Funny. Random. Touching. Inspiring. I really like her, but I haven`t read as much of her blog as others.

Susan Senator's Blog
Love her book, Making Piece With Autism. Love her!! So honest. So approachable.

In fact, that another reason why I love parent blogs so much. By definition, they are parents who wanted to reach out with their stories and experience, so I've found them to be so open and approachable with questions and comments. The Internet rocks!!!

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