Does your child know that he/she has autism? How and when do you tell him/her that he/she has autism?

A few weeks ago I met a lady and I shared that my son has autism, she got all excited (as we special needs parents often do).  It’s kind of like finding another member of the club.  Anyway, she was telling me that her young son was recently diagnosed.  She was so happy that she finally found the answer to why her child was “different”.   She said that his IQ is at genius level, and that he was talking in full sentences and using “big” words as a toddler.  I feel sure that this child can already see how he surpasses other children his age.

I was visiting with a friend the other day and she was sharing with me that a member of her family has a young son with autism and the parents are at odds with whether or not to tell the him.  He is at the age where he is becoming aware of the children around him.

My son is 26 and non-verbal.  His last IEP evaluated him at the level of a 6 month to 3 year old.  Have I told him that he has autism?  No, I have not sat him down and said “Son, there is a physical reason that you are different from your peers.”  But we have used the words around him.  We have always discussed his autism in his presence, talking about it as if it’s no big deal.  Because, we feel that for him and us, it really isn’t. (We have been dealing with this for 1/2 my life…there’s nothing new here)

Now if he was higher functioning, and unaware of his diagnosis, I would have told him that he has autism as soon as possible.  I think it would be unfair NOT to tell him.  There must be enough questions in his head adding to his frustration and anxiety. And one simple word could ease his pain and confusion.   It’s my job to protect him, and keeping him bubble wrapped would only help me, not him.

What do YOU think?  Have you told your child? And if not, why haven’t you?

~ASM

Sharing the Autism Spotlight

I have a few favorite bloggers, as I am sure you do as well.

Things have been very hectic in my house lately, so I thought I would share one of the posts that I related to recently.  It is by Bacon and Juiceboxes: Our Life With Autism.

“G.I. Joe’s”

“They’re not as sweet as an old family heirloom. They aren’t as romantic as Daddy’s first BB gun, or Little League baseball glove. But for me, they are nostalgic. They bring me back to a simpler time in my life. I spent countless hours playing with them in my bedroom, in our basement, in the patch of woods behind our house that, to me, was as expansive as the universe itself. They dominated every Christmas, birthday, and the occasional good-report-card day of my childhood.

When I turned fourteen and discovered those mythical creatures called “girls”, I packed them with more love and care than I would ever admit to those scary, pretty creatures and stored them away in our attic.

Even back then, I had a silly fantasy of carefully wrapping them all and giving my future son one magical Christmas morning. I figured his ninth, maybe tenth. We would unwrap them together and set them up in a magical epic battle scene of good vs. evil. Until then, they would remain in their protective boxes, stored away in the secret corner of the attic. I had such grand and silly plans.

First, I met my beautiful wife. Still, they sat unopened. (Well, I may have opened them once and may or may not have whispered a “pew, pew” or two)

Then, our first child. Her name was Anna. She wouldn’t be interested. They remained unopened.

Then, our son. My plan was unfolding perfectly.

My parents sold my childhood home and the boxes were moved into their new basement. God slowly revealed His own plan to me. It was different than mine, of course, and as I have learned, it’s the only plan that really counts. My son is turning fourteen himself this year. Those boxes are still sitting in my parents’ basement. That makes me a little sad (a lot sad sometimes) and that’s O.K. It was a silly fantasy that was never promised. I’ll trust God’s plan and focus on the wonder that is our life. And, I’ll forgive myself and allow a minute or two of self-pity when I feel like a good epic battle of good vs. evil that has never interested my beautiful son. Then, I’ll get back to it… back to what makes him happy… back to God’s plan… back to what really matters.”

This touched me as Buddy recently had a birthday… this year was harder for me than most.  I actually had a week or two where I was honestly depressed. I think, because this birthday would have been one where I had imagined him on his own, married and starting his family of 2 children (a boy and girl). He would have been working at his dream job, and asking advice on buying his first home.  I would have been helping his sweet wife pick out curtains and baby clothes.   But instead, I bought him a new Tonka truck, and a bunch of airplanes.  And I also did something that was very hard …I went up into the attic and got down his highchair (that I was saving for his children) and I gave it away.

That was last month,  things are back to normal now…Buddy loves his Tonka and planes (he sleeps with them all) and we are also back to God’s plan, and yes, it is what really matters.

Please take a minute and go to Mr. Bacon’s Facebook page and enjoy some of his wonderful posts.

~ASM

 

ISO A New Best Friend

ISO  Best friend, must have a great sense of humor, compassion, be intuitive and know how to “take it to the grave”.  Preferably a woman, with at least one child, bonus if the child has special needs, such as autism, extra bonus if said child is a young adult.

She must be able to differentiate between venting and literal meaning in regards to husband ranting.  If I say “I want to kill my husband” she needs to know weather to hand me bowl of ice cream, or to start Googling “How to get blood  out of the carpet without fading the color.”

She needs to be able cheer with me when my autistic child reaches a long overdo milestone, and not get grossed out when I talk about some of the not so pleasantries that come with being an autism mom.

She needs to be able to look at me and know that I NEED to get out of the house and have a girls day, because the overwhelming black cloud that follows me around, is getting so close that it’s starting to block out the sun. Or that I need  her to just bring her hubby and kids over with a board game and snacks for a communal gathering.

She cannot be judgmental, especially about the condition of my house if she drops in unexpectedly, or about my weight.  However, she needs to motivate me by saying  things such as “Your house smells great,  I think it’s the smell of the fabric softener lofting through the air, from the heaping pile of laundry on the couch, waiting to be folded.” and “Come on, get your sneakers on, I feel like a 2 mile walk n talk.”

She needs to be able to read between the lines, when I say things like “Mary’s daughter just had a baby,  Mary is now a Grandma!”  and know that what I am really saying is “How lucky Mary is, I envy her, I will never be a grandmother.”

She needs to be able to blurt out the lines to a movie or sing a bit of a song that pops into her head as it relates to our conversation.  Bonus if she can join in as I do it.

She needs to be able to get along with my family, and mix well with the white collars, blue collars and rednecks.

Above all, she needs to know that most of this information that I share with her, has to stay hidden in the room that I have created, because no one on the “outside” can ever know… they just wouldn’t understand.

This position is open until filled,  compensation will be matched accordingly.  Serious Inquiries only.

~ASM