Thursday, October 11, 2012

What to REALLY Expect: Asperger's Syndrome

What to REALLY Expect: My Child Has Asperger's!

Today, I wanted to do an article that's near and dear to my heart.  What to REALLY Expect is all about one woman and her son's journey through the diagnosis and emotional roller coaster of Asperger's Syndrome.  Asperger's is on the Autistic spectrum and are considered high functioning or mild cases of autism.  A lot of people don't really understand autism, let alone all the different degrees on the spectrum.  1 in 88 children are now diagnosed*, boys mainly being affected.  Practically everyone you know knows someone who has been diagnosed with some form of autism.  Please comment below or email me if you have a similar story to share.

*more information can be found at (link to the website is at the bottom of post)

When Somethings Not Right: An Emotional Journey through Asperger's Syndrome

He was a quiet baby.  Never really showed much emotion.  He didn't laugh, didn't cry, he was just content to lay by himself and stare around at his new world.  He did however, get fussy when people wanted to hold him, kiss him, get close in any way - that, he did not like!  He formed a bond with his mother, but really no one else.  His grandmother called him Stoic.  His aunt called him weird.  His mother called him perfect.

He started school after only 1 year of life.  His grandmother, who was watching him and a few other children, said she couldn't bond with him, that he wouldn't let her get close and it was something like she'd never seen (grandmother was formerly a special ed teacher) and that maybe school would be good for him, the social aspects anyways.  It couldn't hurt, right?  Wrong.  School was heartbreaking!  Mother would peek into the class and see all the other children at circle time, her son would always be alone, far away from the group.  During craft time, same thing.  He wasn't talking either.  Nothing.  No "mama" or "dada", no "cat" or "NO"!  Maybe it was his hearing?  He only reacted to loud noises - he didn't like them.  If you spoke to him and he wasn't looking at you, he never responded so it HAD to be his ears!  It wasn't.  His hearing was fine.  Everyone develops at different rates, the Doctors and specialists told her.

Her baby grew into a toddler and soon he was 3!  He still wasn't talking all that much (the occasional "mama" or "whats that?" would sneak out of his tiny little lips, but rarely anything else.  He wasn't fully potty trained and he was also biting other children all the time.  Everyday, multiple children.  He had no bond with the teacher or her assistants, or his classmates.  His maternal grandparents suggested getting him tested for Autism - that something just wasn't "right".

In that moment, with that one little word, everything changed.  It was like the earth was on pause for his mother.  How could that even be?!  He's fine!  He doesn't flap his hands around, nor does he squint his eyes!!!  He's super-smart, he just doesn't like to talk a whole lot!  He's just a little behind all the other kids - he was born a month early - cut him some slack!!  His mother was furious!  How could her own parents even think such a thing!?  She rushed out of her parents home and vowed to never let them be around her son, since he was autistic and wasn't "good enough" for them, she thought.  Then her thoughts wandered to the window at his classroom, the one she would peek through to spy on him.  He was really anti-social.  He was really delayed in quite a few areas.  But then there was the areas where he was advanced.  What's going on here?  She called his pediatrician and scheduled an appointment with a neurologist and speech pathologist.

The speech pathologist said his speech was in fact delayed, but it wasn't anything that would need therapy.  The neurologist wanted nothing to do with him after he found out the boy had Medicaid.  He then went to his pediatrician who said she thought it was Asperger's Syndrome.  A "high-functioning" form of autism.  He wouldn't need any type of therapy or medication - at this time.  Take it day by day, year by year.  He may never need anything, he may eventually need some support.  His mother and doctor worked together and came up with a plan of action.  One that not only would help him, but offer emotional support for his mother, who was having an extremely difficult time dealing with and coming to terms with all this.

The plan has worked thus far and the boy has yet to have any type of major difficulty.  Does he always stay focused and on task?  No, but what 7yr old does!  He is slowly making a few good friends and even sits with them during lunch (he has always sat alone - and has always preferred it that way)!  He is an excellent reader and currently can read at 5th - 6th grade levels!  He has trouble sitting still and keeping his hands to himself sometimes and has sensory overload at times, but it's getting better.  The meltdowns of the past over a texture of food or the specific routine of different animals to kiss goodnight (in a specific order) have faded into just simply trying the food, then deciding if it's OK to eat and just giving him kisses at bedtime, not the entourage of animals.

His mother loved him before this started, during the darkest hour, when he was so lost and she was so frustrated by not knowing what to do to make it better and now, years later.  It's been a rocky road to travel down, the emotions of blaming herself, the shots the doctors gave him as an infant, the food he's eaten.....she blamed til the cows come home.  At the end of the day, it was nobodies fault.  There was nothing she or anyone else could have ever done to prevent this.  
He is a gift from God that she would never, ever take back.  She would never change 1 single thing about him.  She just wishes she would have not been so blind and ashamed in saying, "Yeah, somethings not what most call normal, but there's nothing wrong"!  Wishes that she would have handled the situation with her parents better, got help for him sooner, but better late than never! 

 Nobody prepared her for dealing with Asperger's - no matter how mild a case, it can be a struggle at any time, on any day.  It's all about trial and error and love, love, love.  Taking care of a child with conditions or special needs can be so draining on the parents, but God doesn't throw you something you can't handle.  You're never alone and there are always people who are more than willing to help you or offer advice and new techniques on dealing, coping and just living in general!

I didn't know what to expect and still don't from day to day dealing with Ben.  It broke my heart every time I'd pick him up from my mom's or from school.  He can be so mild-mannered and well behaved at times and during other times, hes screaming, hollering and running around non-stop.  I love him so much and that trumps all the "bad days", any day.  Somethings not right, no everything is exactly how it is supposed to be.  Everyone wishes for the "perfect kid" know what?  I got him!

Click here for a great informational website,

Peace, Love & Light,


1 comment:

  1. I'm a puddle...It can be really hard to recognize those things, as a parent, but also because they are often easy to attribute to other things (in our case, it was that he was nearly 2 months early) and also because in the din of everyday life it's hard to see the changes and the things that are static even when they aren't supposed to be. I'm so proud of you for writing this piece. You are an amazing mom and a fantastic teacher. I tell everyone how you were the one who so gently suggested we talk to a professional (at Easter Seals) about some of the issues Alex was having. I wonder, if we didn't have you as his teacher, how long he and I both might have gone without the information we both needed to move forward with strength and determination. Big hugs and THANK YOU! :-)