Alphabet Soup July 3, 2010

NAMI, CHADD, IEP, AD/HD,

WCJ, WISC, Oh My!!!!

I’ve been thinking about all of the people and groups that have helped us in the past year or so since we found out about Punkin’s diagnoses.  It’s reassuring that there are so many people out there who are willing to help others.  I thought I’d pass these resources along to you which is where “Alphabet Soup” come from.  They all have their role in the treatment of our son’s conditions.  I am grateful for what they do and hope to repay them somehow in the future.

All of the elements of this new world we live come with a new vocabulary and acronyms galore!  I’m sharing those groups that have helped me since Day 1 in the process of finding the best care and support for us as a family and for Punkin as he progresses through life.  This is just a start because there are too many for one post.  You’ll also find the links to their websites on the right of this page.  See “Parent Resources.”

NAMI – National Alliance on Mental Illness:

This was my first exposure to our “new normal.”   They had a NAMI Basics class that helped me understand the overall aspects of mental illness, its treatment, and the resources available.  It is held for six weeks, two hours per meeting.  A group of parents sitting together and finding out they are not alone was incredible.  Your state is likely involved with NAMI already and you can find local chapter information on the NAMI main website.  I’m scheduled to certify as a trainer in August.  I’m thrilled that I have the opportunity to help others.

UPC – Utah Parent Center:

The Utah Parent Center was one of my next phone calls.  This is staffed by parents who have been through the same challenges and are there to share their experiences.   They have been particularly helpful by sharing their expertise in the school setting – the testing, IEPs, and Section 504s.  Oh, and they’ve been very helpful in explaining what all those acronyms mean!   If you aren’t in Utah, you should try searching for a Parent Center in your state or consider calling them to see if they can refer you to the Center in your area.

CHADD – Children and Adults with Attention Deficit/Hyperactivity Disorder:

CHADD has been helpful in providing information and support for the ADHD diagnosis.  They also have local chapters that you can identify by visiting their website.  I just finished their Parent-2-Parent class.  It was taught by a mother of three children who have ADHD.  It was seven weeks of really good information that helped me understand ADHD so much more than I had.  The class had two other couples and we had a great time sharing our stories and crying together.

LDA – Learning Disability Association:

LDA is a national organization whose mission is to help individuals with learning disabilities of every kind.  I attended theirannual conference and learned so much about the basics of certain learning disabilities and ways to ensure that I understand the testing process in the school system.  They had an amazing speaker who spoke about his life with ADHD and how he was able to get his Ph.D. at Brown University.  It really helps to see the success stories!

Again, I have added these links to the right (“Parent Resources”) and will add more as they enter my world.  If you know of any, please feel free to share.  I’m hoping to learn from you, too!

More evidence of the truth. June 5, 2010

The results are in!!!

We survived the initial discussion of Punkin’s testing at school.  He qualifies for special education services.  It’s weird. It’s what I actually wanted so that he was able to tap into special services that give him the best chance for success.  However, it’s hard to read: “[Punkin] has a disability, as defined in the Individuals with Disabilities Act (IDEA), that adversely affects educational performance and requires special education services.  Classification for special education: Autism.”

Even though I know it to be true because the doctors have said so and any research I’ve done supports their finding in some strange way, seeing it from another group in writing makes it that much more real and hit me as emotionally hard as it did the first time I heard it.  The school system has so much influence in how well he does in life.  I’m glad they recognize and admit he has a disability and is not just being a difficult kid.  The latter was our world for the past two school years.

The next step?  Follow the Individual Education Plan (IEP):  Goals are set for Punkin and steps required by the school are in place.  It was a much more overwhelming experience than I had anticipated, especially with Daddy, me, and six other people in the room that have been involved with Punkin’s evaluation.  Our job is to be sure things are going as smoothly as they can and everyone is meeting his needs.

So, now that my “pity party” is out there, I’ll put my positive spin on things.  Kids with Aspergers typically have an average or higher than average IQ and he’s no different with the high-average finding.  It wasn’t a surprise to me and anyone else that spends much time with him.  He’s a smarty, for sure!  Academically, we don’t have to worry about challenges in those areas along with the behaviors.   We need to be sure that the behaviors are managed so that he is not defined by those and his strengths are channeled appropriately.  Children with Aspergers grow up to be our next generation of scientist, statisticians, computer programmers, engineers, etc.  He is going to be AWESOME!! He’s already changed my world, but watch out – he will change yours.

There are people out there worried about Punkin and others with Aspergers/Autism.  There are so many people that care and put their heart and soul into making things better these terrific kids and their families.  I am embracing them.  I am grateful for them.  They are my rock.  I’m tapping into those resources while I need them most and then hope to be there for others someday.