Raising Awareness: Living with Special Needs Day 3

Today we switch gears and talk about Autism. I have a fabulous guest lined up, whom I think many of you know already. Please give a big welcome to Heather from Acting Balanced.

Hi, my name is Heather and I blog at www.actingbalanced.com – it’s a place where I combine my passions for being a never-stay-at-home mom with product and book reviews and giveaways… I was asked to guest post here today because one of the things that I balance is my daily life is having a son who has Autism…

Liam was diagnosed at 26 months as having mild to moderate autism, but as a mom, I knew that things were not right long before that… some people said that I was seeing things and his speech therapist who had been working with him for over six months was shocked that I was even getting him tested… he was such a sweet boy, with a great temperament, who just didn’t talk…

But it was more than that, and as a full-time mom, I saw signs – a lack of eye contact, a lack of interest in any forms of communication and even some regression in behaviors that I knew he had mastered… there were also the compelling sensory issues that were almost always present – he hand flapped instead of clapping, he could spin in circles for great periods of time and enjoyed the sensation , and when he played with cars and trucks his main interest was in watching the wheels spin – half the time he’d have them turned upside down and just spin the wheels in the air.

His communication issues ran deeper than the surface too… he wasn’t grasping receptive language consistently, either.  He didn’t respond to his name even 50% of the time and he wouldn’t interact with anyone other than family.  By two, his friends and peers were progressing to imaginative play and starting to talk – many of them using multi-word phrases…

I had to push for a referral for testing… but I’m glad I did… and actually, the funny thing is that I was relieved rather than sad or angry at the diagnosis.   It would open up a world of services for Liam that would not have been available to him without the diagnosis!

My dear, sweet husband had a slightly harder time with the ‘label’ - this is what he wrote in January of 2009:

"Just before Christmas I found out my son (just over 2 years old) has autism. Ever since then I have been having a problem with coping.

·                     I know that this changes nothing about my boy. I love him dearly and think the world of him. It does not change the smiles, the hugs or even the cries.

·                     I know this is a positive in that now he has access to special services that will help him.

·                     I know that since it was caught young the interventions are likely to have a great effect on him too.

·                     I also know this makes my wife's life a little easier in now show knows what is going on and can deal with it (she is a stay-at-home mom).

He was diagnosed in the 'moderate to high' category. According to the PhD he is 26 months and is at a 13-15 month development level on most categories. Though I am still not sure what they can actually tell at this age. I look at this as a baseline and we will know more in probably three or so years. He does not talk yet and he does indeed have social issues that are quite obvious (even in my denial stage beforehand - I recognized it).

I am really looking forward to when he talks. My ten year old is adopted (we are her uncle and aunt) so I am looking forward to being called 'Daddy' for the first time. While I know it will happen someday, but what happens if it does not (and yes, logically I know if does not change a single thing)? I know this sounds selfish of me - but I really do want to hear it one day.

I am also looking forward to trying to figure out how to stop the head banging when he gets frustrated. It is very disconcerting and I really do not want him to hurt himself. I can understand why he does it. If I could understand a lot of what is going on around me but I could not find a way to communicate what I need and feel back - I'd be banging my head against the wall too. Seeing the frustration in his eyes is just heart wrenching.

It is strange but this is the first time since I knew officially that I have been really upset by it. I guess the holidays were all about having fun and being together. The reality of being back to work and having to call insurance companies etc. has brought the reality to me I guess.

The real issue is that I think about how nothing in life is going to be easy for him and it makes me sad. I am having a hard time reconciling myself with the issue as a result. I love my boy and want to do what is right for him. I have been told several times to just keep doing what I am doing. That I am doing the right things. I guess it is the powerlessness that I am feeling that really hurts. I just wish I could wave my magic wand and make things all better (like a kiss to the boo boo) but I know that is not going to happen. "

Where we are now:

This summer, Liam's dad and I worked daily on his alphabet, counting, colors and shapes, as well as name recognition and the like...

And yesterday we got the pay-off

He got his report card from the first 4 weeks of school - Liam has demonstrated to the teacher that he knows his alphabet, counts to 10 regularly and knows his name in print, is starting to pre-write for her and is making huge strides in language usage for her...

He's still hanging back at school though - at home he's counting to 20, writing his name and recognizing 3 and 4 letter words when his dad or I write them on his magna-doodle... but we're breaking down that communication barrier - I honestly think he may read before he speaks in sentences - but we've unlocked another piece of the puzzle and he loves showing off his new skills!

Liam is still struggling with social communication, but I have faith that we’ll get there too… he’s got definite language patterns and a base to work from… we will connect the puzzle pieces in time.

Thanks for reading our story – please feel free to drop by www.actingbalanced.com to read more.

Please do take some time to stop by and say Hello to Heather. Thanks for stopping by today. Your support is deeply appreciated. Grab the button, link up with your own story.