Autism Update - Part 4

Hunter had his follow-up with the Children with Special Needs Health Clinic (CSNHC) today.  Compared to our first appointment with them, today, I walked away with definite answers and feeling at ease.  The last couple posts about the Autism issue, gave Hunter an educational classification of Autism due to the results of the ADOS.  Today, the pediatric psychologist said Hunter does NOT have Autism!!!  He said he has an Autism Spectrum Disorder (ASD) of Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS), but that doesn't mean he has Autism or is Autistic.  He said the only reason he has an ASD, is because he has a speech delay, as well as some developmental delays.

Hunter also met with the pediatrician.  This doctor is one of my favorites with the CSNHC.  Dr. Carbone KNOWS his medicine...he is amazing.  Last time we met with him, he determined Hunter had ADHD, but didn't want to put him on medication unless it was absolutely necessary.  After meeting with him today, and evaluating Hunter a couple times, he determined Hunter would definitely benefit from meds.  He said a lot of doctors, especially those in smaller towns, don't like to give ADHD medications for children younger than kindergarten age, something our family physician told me the first time I took him in and gave us the referral and possible Autism diagnosis.  However, if there is a definite issue with ADHD in children younger than kindergarten age, they will give it.  Today, Hunter was put on Ritalin.  Dr. Carbone went over the dosing schedule for the Ritalin, the side affects, that the medicine is in his body for 4-6 hours, then it's gone, and our ultimate goal with Hunter being on it.  He said it may take a month or two to really get the dose that is right for Hunter.  ***With this medication issue, I do have to put my own disclaimer on the issue because I had an acquaintance (who doesn't read my blog) tell me I am stupid because I give my son medication for his asthma and that kids should not take medication (interesting, she is into illegal drugs herself...just sayin')...I DO NOT like medicating my kids, so this is really hard for me.  BUT, I will do it if it helps my kids, and until you have lived a day in my shoes, or my sons shoes, don't judge me.  Sorry if it's kind of harsh, but...***

Last, we met with an Occupational Therapist (OT) to deal with the Sensory Integration Dysfunction (SID) Hunter battles every day.  SID is something I have been reading TONS about, because I know he has this.  Hunter is a "sensory seeker", meaning he seeks out behavior's to help him reach the normal range in our sensory domain.  To give you an example, when Hunter was born, he LOVED to be swaddled, held tight, have tight clothing on...today, at 3 years old, he LOVES tight squeezes, to have your head rest on his tummy or his arms or legs.  This "tightness" or "being close" feeling is the proprioceptive sense we all have.  Hunter proprioceptive sense is WAY below the normal range.  His muscles, bones, tendons don't get the signals from his brain that the senses have been met.  When we give him tight hugs, or lay our head out his tummy, it relaxes him.  It gives him a sense of relief, his proprioceptive sense has been met.  I know, it's A LOT of information for me to really understand, but I am getting there.  I am understanding it.  I am learning things I can do to help my sweet Hunter.  The OT's suggestion is to put Hunter on a sensory diet.  No, it isn't a food diet, but a diet of sensory activities, activities that will help Hunter reach that normal domain in the sensory department.  We are going through a list of activities from the OT and from the book The Out Of Sync Child Has Fun, to help determine the activities for the sensory diet.  A lot of the activities are things that we already do, but I never realized they help him meet his sensory needs.  If you want a great book to read to understand what Hunter is dealing with, read that book, as well as The Out Of Sync Child.  It gave me a whole new insight on my sweet boy and what he deals with daily to meet his sensory needs.

To say that I need to hear all of this today, is putting it very politely.  It was such a...?relief? to me.  I know it isn't true, but since this whole Autism diagnosis/possible diagnosis issue started months ago, I have felt like I failed as Hunter's Mom.  After everything I have read on Autism and ASD's, I felt horrible for the things I have disciplined Hunter for.  I have felt horrible for not catching it earlier, and I know he is only 3, but I look at it as "that's 3 years of his tiny life that I have been doing EVERYTHING wrong.  I have spent MANY days and nights in tears after doing research.  I finally came to the conclusion, I need to put all this stuff away, take the books back to the library, and not worry about it until I hear what the pediatric psychologist says.  All my fears, emotions, heart ache, feelings of failure have been put to rest.

I think we have only one more follow-up appointment with the CSNHC in January...and we DON'T have to go up to the University of Utah to do the ADOS.