WEAP

WEAP--WI Early Autism Project

Initial Assessment June 30, 2011

Tired of waiting for our appointment at Mercy, and losing my patience with the Waisman Center (total waste of time), Aiden finally got a diagnosis today at the WEAP Center.  Aiden was diagnosed with PDD--NOS, pervasive development disorder not otherwise specified--a "label" on the autistic spectrum.  He qualifies for services (minimum of 20 hours/week), but the wait for the "waiver program"--meaning we wouldn't pay for services out of pocket--is a year or longer.  Very sad.  The one thing that everyone can agree on in regards to autism is EARLY INTERVENTION is KEY, and yet, my 3-1/2 year old waits once more.  Even if I went back to work full-time (which isn't going to happen if my life depends on it), we couldn't afford to pay for his therapy.  My last hope at this point is Mercy Options.  If nothing else, I've learned enough from Aiden's speech therapy to develop a speech program on my own.  The sensory stuff?  Not a clue!  I'll just pray that Aiden doesn't regress before Early Childhood begins again in September.  Summer school ends mid-July...

How do I feel about this?  Disappointed, frustrated, and sad that I can't get more help for my son.  

Thank you

A note of many "thanks" to those who take the time to read this, and help in any way that you can.  I appreciate your comments so much.  Thank you for inquiring about Aiden, and listening to my fears and/or frustrations.  We all have our challenges in life.  The grass is never "greener," on the other side, it is just different.  I took Aiden to swim lessons the other day, and I quiety cried at the pool-side.  This was a class for "special needs" children.  I cried because Aiden's diagnosis is slowly becoming a realty.  Later, Abe asked me if I noticed the little girl with the trach tube--she was about 2 or so.  Sadly, the answer was no.  I didn't see her, because I was too busy feeling sorry for my son and I.  I realized then that we were very blessed, and my attitude and perspective needed to change.  It could be much harder.  My heart broke for the children who will struggle their whole lives, and the parents that love and support them through their journey.  I pray that we can lift each other up, accept and love one another for our differences, and truly support one another.  I know that many may not agree with what I write on here, but I've chosen to share it in hopes that it will uplift and inspire someone else.  It helps me so much. Sometimes, we go through life focusing on our own trials and shelfish needs (myself included), but we find ourselves when we are in the service of others.

Decisions

June 26, 2011

Abe and I will be married 5 years in September.  Each year, we take a picture of our family around Christmas time.  Last years photo is hung above our kitchen table--Aiden nearly 3, and Austin age 1.  I look at that photo, and all I see is a child missing...

When Austin was about 9 months old I thought "I can do this again," and I felt a twinge of excitement to have another child.  Yet, I waited for many, many reasons.  Then, shortly after his first birthday--near Aiden's diagnosis--I knew that our Heavenly Father has another child for our family.  This time, it wasn't excitement that I felt.  It was dispare.  Raising 2 young children--22 months apart--is very challenging.  To put a pregnancy on top of financial stress, pre-existing exhaustion, an increasing awareness of Aiden's struggles, and my own struggle to cope...it would take a lot of faith.  How do other parents do it?  My mother is the baby of 12 children (one of which is autistic), and I am amazed by her mother's faith and strength.  Maybe it is through significant adversity that we find our greatest strength; yet, we have already been through so much.  Much more than I will share in this blog.  Let's just say, I'm desperate for a year of prosperity and peace--not adversity.  Harse to think of another child in that regard, yes, but I'm so scared.  Austin talks more than Aiden does, and I still have some problems with Aiden running away.  It is almost like I have 2-18 month olds, and that is hard--very hard.  Who knows what Aiden's future holds?  Potty training...not even close.  Speaking in sentences...that would be a miracle.  What happens if Aiden doesn't adjust to the change?  What if I can't find balance between the 3?  And so on, and so on...

And so, I wait again, but each day the thought is there, and the picture haunts me...

Progress

Yesterday was Aiden's last day of Early Childhood for the summer, and I cried.

As I walked away from Aiden's teachers and said, "thank you so much" and "goodbye, see you in the Fall," I cried.  Aiden loves his teachers.  He will give me his dinosaurs that he clings to, and run to give a teacher a hug--happy to start his school day and say "goodbye" to mom for just a moment.  I'm so grateful that it isn't a fight to get him to go.  In just a few months in EC, Aiden made so much progress!  This year, they learned about animals.  To my surprise and joy, Aiden SAYS quite a few animal names--on his own--with just a book to prompt him.  He even makes some animal noises!  His adorable, sweet voice is music to my ears!  He still repeats like crazy, but it is speech, and I'm so happy to hear him gain some words of his own.  

There are times when I see Aiden and Austin running and laughing together, and I think--nothing is wrong.  Then there are moments, especially with other children, that Aiden will stand or sit in a corner playing with a stick or random object for hours instead of joining in on the fun.  That makes me sad.  He lays on the floor a lot too, in public and at home.  He has a "shreek" that he does at random for no apparent reason.  He doesn't seem angry, upset, or unhappy at all.  He just "shreeks" at random.  On a positive note, Aiden is starting to repond more and more to me, and he is running away much less!  He was perfect at the grocery store yesterday, and I had a glimpse of what could be.  He pushed his own cart, and stayed by mom--wow!  He listened, and followed.  I was overjoyed, and so proud of him!

I know Aiden could be much more severe than he is.  I'm grateful I don't have to see my son sit in a corner all day, with no verbal or non-verbal communication.  He loves to go places, and he transitions very well.  The only time I noticed that he couldn't handle the break in our routine, was the night I left him with my sister-in-law overnight.  BIG MISTAKE.  The following night, Aiden screamed all night long--literally.  He will start summer school in a week, and I'm a little nervous to change his routine, but I think he will do well.  Let's hope he likes the bus!      

We have an appointment at Mercy on July 11th, and hopefully, we can start some in-home therapy again!

Books

"Let Me Hear Your Voice.  A Family's Triumph Over Autism"

by Catherine Maurice

I've read a lot of information on autism--some good, some bad, some downright made me angry and upset.  I've turned away from "medical opinions" for a moment to read this book.  It is about a mother who fought for her family, and won the battle against autism.  In just the first few chapters, I feel like I'm reading about my own experience.  The denial, fear, and final acceptance of the diagnosis were the same.  At the time of her daughter's diagnosis, in the 1980's, things were much different than they are today.  Hope is out there.  Some autistic children function at levels that were never anticipated back then.  She was told to seek help for herself, but never for her children.  This was just something that happened, and there was no hope for progress.  I'm grateful that autism research has come so far, and Aiden has already been through some great programs.  I see positive changes in him.  They are gradual, but there, and I have hope with each new day. 

 

Prayer

When there is nothing left but God, you find out that God is all you need.

Prayer is, and always will be, a daily source of comfort for me.  I will always remember my grandmother as a woman of faith.  She woke up early every morning to pray, and she was always there to help others.  I hope I can leave that legacy behind for my children and grandchildren as well. 

Today, Aiden SAID his first prayer.  I folded my arms to pray with the kids before dinner, and he said "Dear Heavenly Father, thank you for this day" before I could utter a word.  I was so proud of him.  He may have repeated what I have said in the past, but it was a connection, and it gave me hope.