Saturday, April 30, 2011

Autism and the FIGHT

Temple Grandin and Angela D and Me 

This pic was taken 4 years ago...just before I was diagnosed with Kidney Disease. You can see that I was carrying an extra 25 pounds of water...yuck! I didn't know I was sick until I was diagnosed and put on meds. Lost a better part of the water retention and my blood pressure normalized. I feel pretty good now and don't look so puffy and tired.

The thing about Autism is...the kids look normal! In fact a lot of them are exceptionally attractive. To the outside world they are beautiful kids that have really bad behaviour. They don't look sick or challenged or cross eyed or cleft palates. They obviously don't have Downs Syndrome or missing limbs or cerebral palsy. For the most part you cannot look at a child with Autism and know right away that the child has developmental delays or challenges of any sort. There is no magic pill to fix diagnostic test to definitively pin point the cause or the severity. As a parent you are faced with a complex neurological delay that NO ONE can tell you HOW to FIX or WHY! And the whole world looks at your gorgeous child being an asshole and thinks you suck as a parent. Fun times!

Just met a Mom with a child recently diagnosed and the memory of that time came flooding back to me. The grief and sadness and YES denial! It's not a slap in the face it's cutting you to the core to hear your child is challenged. And they ALWAYS tell you to be prepared that they will NEVER speak, NEVER be toilet trained and NEVER seek affection. You sit there looking at these people swirling in a tornado of grief and confusion and doubt. Completely overwhelmed with the task at hand and have no where to turn to but a couple of pamphlets and a binder with numbers of professionals that ALL have a 6 month waiting lists or more. You don't understand the language they use or the terms at all. Sensory seeking? HFA? MR? DIR? PECS? RDI? PDD-NOS? Etc etc etc......

Your spouse shuts shut is EXACTLY like losing a loved one...You feel grief just like that...Men are usually in denial longer...and for years really. Mom has to step up to the plate and get help and learn all of it without the support of hubby...who thinks the diagnosis is BS and the child is just speech delayed...LOL!  9/10 that is the case. Have met hundreds in person and hundreds more online and we all have similar experiences. Hubby can't take it. The exceptions to this rule are few and the men that run with it right away are amazing in their support and knowledge.

Which brings me to the point of this post. Having spoken with many a parent this past week about what made the most difference in the success for your child we all agreed...US! That's right! The parents are the key to getting through. We DON'T give up! We fight like hell for the best supports in therapy and school. We fight like hell at home and DO NOT TREAT THEM LIKE BABIES! Treat them at their age level and expect these kids to behave as their age group. NO EXCUSES! Temple Grandin made a 90 minute presentation all those years ago. You know what she said? Why are parents NOT expecting their kids to have manners? She was raised in the 1950's...she was expected to have manners and behave even if she did not speak. She sat in Church and behaved. She went to school and behaved. Our kids have to behave as well. They are expected to conform to social standards in public. Picking your nose at the check out is not one is perfect and we have had our fair share of meltdowns from hell in public but we didn't give up! Let the little buggers break down and freak....the next time the time will be less and so on and so on....Remember having Ty in the sling, Sammy in the cart and Joe having a fit on the floor in a busy super market. I turned my back on Joe and played with Sam. Gave him ZERO attention but kept him safe. After 5 times he gave up...Mom won't give me the attention I seek. Joe may not have spoken but he was the GRANDEST manipulator of them ALL! People on the ASD spectrum are SMART! And they read people very well. If you are a sucker they got ya! And they will have you running in circles to make them happy. We parents figured that out and said NO WAY! We support each other and laugh at their efforts to control the environment. The weak get run over and the strong admire. So you better make sure your child has an EA or a BI that gets that....if you don't then your kid will NOT thrive...he/she will get what they want and stay stuck in that behavior forever. If you let that happen then it's your own dam fault. FIGHT like hell to bring them out and function well. Don't settle for a babysitter will ruin them in the end.

Thanks to my ASD parents for sharing with me and teaching me so much. I love you all!

Big Momma Love to you all! XO


  1. That was a wonderful blog Susan!! I am so thankful to have met you, it is giving me the hope and strength needed to move forward. Having a little girl that is diagnosed with ASD and as cute as can be, makes it very difficult for people to understand her sometimes (I think adoring) "strange" behaviors. I have heard that it is not that common with girls and therefore they can often be treated differently yet again due to the fact that they can be even more "sensitive". All I know is that I have a smart kid in there and she shows herself more and more everyday, lots of love, lots of patience, lots of understanding and all the support that be given and received; that's what will help her be all that she can be and more. I will look forward to reading more from you!! CB

  2. I was thinking of you when I wrote it. It's going to be a battle but don't give up. She is in there and knows how to work it. Don't let her have her way. It's really important to push these kids....especially at her age. And give in to the grief....let it out!I learned more about myself the first 3 years after Joe was diagnosed than any other time in my life. Parents grow and change too. And that's okay too. XO