The Endless Spectrum of Autism Opinions and So Called Experts

My son Taz was diagnosed with an Autism Spectrum Disorder, PDD-NOS (Pervasive Developmental Disorder) when he was three years old. Before he was even diagnosed, I was bombarded by mothers and other know-it-alls about crazy misconceived ideas that certain diets and/or treatments (ie: hyperbaric chamber treatments) would cure autism. Of course as soon as word got out of his diagnosis, I also received lots of questions like "do you think its immunizations that caused it?" or "I swear my friends little boy was cured by such and such treatment...." or diet, or some other concoction. Sure, some of these things may have really helped some individuals in one way or another. However, I have read over and over and over again that THERE IS NO CURE for autism.

Bottom line.

I am a very very busy mother who believes in focusing on things that have been scientifically proven to be beneficial to children with Autism. What is the most important thing I can do for my children?

EARLY DIAGNOSIS and INTERVENTION is Most Important

When I was worried about Taz, I should have pushed for an earlier diagnosis. For whatever reason, I was concerned about labels and people and their reactions. I didn't know I wasn't doing Taz a favor, and the professionals in my son's life were not honest enough with me to help guide me in that direction. Taz did not receive one-on-one behavioral therapy (ABA / discreet trial/ with a naturalistic spin) until he was 4 1/2. The 2 years of therapy he did receive was wonderful and helpful, he just could have benefited much more from it at an earlier age, as younger children's brains are more pliable.

About the time that we started aggressively helping Taz, Gizmo was starting to show some delays. He was about 15 months old when I learned about the UC DAVIS MIND INSTITUTE in Sacramento, CA. Thankfully some of Taz's preschool teachers made me aware and I made a call that changed our lives. Gizmo was diagnosed at 15 mos old with a provisional diagnosis of Autism, which made him eligible to participate in the Early Steps Study. He was blindly selected to be part of the group that received therapy from the ITs at the MIND Institute, who implemented the Early Start Denver Model. As part of this model, I was trained during the PTP (Parent Training Portion). I went up to the MIND institute once a week for 12 weeks and received instruction and evaluation with Gizmo from Dr. Sally Rogers and Dr. Laurie Vismara. When the PTP ended, Gizmo began Phase II, which was 20 hours per week of in-home one-on-one therapy. He was 18 months old when this therapy began and it lasted two years. Gizmo and Taz began their treatment around the same time.

Gizmo is now 4 1/2. He attended a private community preschool last year without an aide and was very successful. He still struggles with extreme non-compliance at times, and some attention getting behaviors. However, he is doing phenomenal. We feel his success can be attributed to the intensive therapy he received from the therapists at the MIND institute.

Taz is now 7 years old. He is doing well also, however, he struggles more than Gizmo.

Its really hard to know whether Taz simply has been more affected by Autism than Gizmo. Or if he would be doing as well as Gizmo if he had received the earlier intensive Intervention that Gizmo received. Or is it a little of both?

In conclusion. I am not looking to "cure" my boys. They are not dying, and I feel blessed to have healthy children. I want to help them be successful in world of human beings that are for the most part-- hard-wired differently. And I hope that those that interact with Taz and Gizmo get to experience the joy of being a part each of their individual journies, as I have.

Slurpees = Happy Kids (even for a moment)

Taz discovered slurpees when we moved to the east coast a few weeks ago, since there are 7 Elevens everywhere out here. And he LOVES them. As do my other children. He has issues with "sparkly" drinks so he can only "eat" a slurpee using the special straw. He won't suck. Right now slurpees are a special treat that he manages to get almost every other day. What can we get Taz to do to earn a slurpee?

Or

Maybe I just like to see the sweet smile and little burst of temporary joy my children get when we all go out for slurpees. Just because its fun!!

Who Cares?

I refuse to stay home. My kids are a challenge to take into public, I'm not going to lie. However, Chick-Fil-A has been a pretty safe place to take them in the past. We recently moved to the east coast from the west coast. Out west, I took my kids to Chick-Fil-A about once a week for the several years I lived there. We went often enough that the employees who worked there knew me. I felt safe. My kids did well. My boys knew the drill, they followed the rules, and most of the social rules, for the most part. When other kids got rowdy, my boys got rowdy. When other children were screaming, of course, my boys would follow right along and scream too.

Today was different. I am not sure why. A new Chick-Fil-A? A new community of mothers? An "off day" for Taz? Who knows. I wouldn't refer to it as a successful trip to Chick-Fil-A, but maybe I learned something from this experience and hopefully Taz learned something. So I guess learning might equal success somehow.

We brought a friend of Sissy's along today, so I had five children in all. Everything seemed to be going smooth. My boys ran into the play area, and I kept Blu with me while I ordered food. As soon as food arrived, everyone came to eat, they were all clearly very hungry. '

Then Gizmo and Taz ran back into play.

A few minutes went by and I noticed a few little kids come out of the play area crying to their mothers, who were sitting nearby. The older kids were pointing into the play area referring to "he" and "him" and I decided I better investigate since I had two "hes" in the play area who might be the culprit.

Sure enough, Taz had "screamed" and scared a few kids. Of course I talked to Taz and told him not to scream. Within a few minutes, two different mothers came out and said he was screaming again. As were a few other children. Of course my kid is the loudest, and the most obvious, so he gets the blame. I explained to the mothers, whose glares softened as they learned of Taz's autism. However, their looks and glances that followed did not go unnoticed. Taz took a little break and then went back into the play area. After five minutes or so I noticed another little girl crying and two women (not the same as before) comforting her and glaring at Taz, looking very upset. Sissy came bursting out saying Taz had kicked her in the face, and then the women came out with the crying little girl. I apologized for Taz and again explained his disability, they responded kindly, however, I was done, and Taz's practice session was over.

How many times in one visit do I have to apologize for my son? I haven't had to hover over Taz since he was 4 or 5, why would I want to put those kinds of restrictions on him now? Needless to say, I left in tears. I felt the world of Chick Fil A moms boring holes through me with their beady self-righteous eyes. I want to get through to my son that he needs to be gentle and aware of little ones, and how to act "appropriately" in a chaotic playroom at a fast food restaurant. I am not even sure he knew he hurt her the little girl, so was a lesson even taught? He said he was sorry, and I am not sure he understood. I feel like taking him into the community is important so he can learn to handle these situations. When will I be able to conquer the overwhelming worries I have of "caring what people think". Because WHO REALLY CARES, right? Hopefully when I muster up the courage to face stranger moms again, we will have a more successful visit next time.