Politically Correct Autism

I have been an autism mom for nearly 27 years now.  Lots of things have changed in the autism world during that last quarter of a century.

When Buddy was newly diagnosed, I went to the grocery store and outside was an older gentleman collecting donations for the Knights of Columbus.  His sign read something to the effect of “Helping  Retarded Children”.  As I dropped some change into the donation can, I thanked the man for collecting money to help children like my son, but I also told him that they needed to change the wording.

Today, I saw a similar gentleman…his vest now reads “Helping People with Intellectual Disabilities”
I have been told that by saying my son has “special needs” I am using the incorrect term.  But I prefer that over Intellectual Disability, because to me, disabled means broken.  When you disable a bomb…you make it useless and inoperable.  My son is not inoperable or useless…he just needs accommodations.
When he was first diagnosed, his first diagnosis was PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).  Although it fell under the “Umbrella of Autism Spectrum Disorders”, Autism wasn’t his diagnosis.  Then as he got older it was changed to Mental Retardation.  (that one stings, and I hated seeing it on his IEP’s)  Now, as an adult, he has Autism.
Several years ago Autism Speaks started a campaign that used a puzzle piece and a light bulb with the color blue.  Today that’s controversial because Autism Speaks misused donations.  This year there is a new symbol and color to represent Autism Awareness.  Now it is an infinity symbol and the color red.
Recently I have noticed that many autistic bloggers are stressing that it should be Autism Acceptance over Autism Awareness.
One lovely young lady that I follow, posts in her blogs that she is not a puzzle piece or an infinity symbol.  And she also says that we need acceptance, not just awareness.  I certainly respect her opinion and point of view.
My point being; this is Autism Awareness Month,  does it really matter what color we wear, or symbol we have on our car or tattoo’d over our heart?   What really matters is that we NEVER stop talking about it.
If we are focused on the politically correct terms, symbols or colors, we are missing the point…and we will be afraid to talk about it…. so, put on your blue and red,  stick your puzzle infinity stickers on your window, and start a conversation!
~ASM

Welcome to the Special Needs Parent Club!

Welcome to the club
Enjoy your complimentary membership to the Special Needs Parent Club!
Okay, I was going to write something humorously, thought provoking, but you know what?  I can’t.
Over the weekend I read a Facebook post from my cousin and fellow SN Mom, stating how she has repeatedly told her limited friends and family that she is unable to be the social butterfly that they would like for her to be.  She said that since she keeps repeating herself, that she was going to post it for everyone, and maybe they would finally understand.
She said that being a Special Needs Mom, takes up all of her time, especially since she also has a neurotypical teenage daughter.  There are Dr.’s appointments, therapy sessions, meetings, as well as her daughter’s extra curricular activities and on top of all this, she is a single mom.  So she is trying to juggle work, the lifestyle of having a child that needs more attention, making sure that her daughter doesn’t feel ignored or neglected, trying to add some balance and do creative and fun family activities as well.  (all of which she is doing wonderfully)  She just doesn’t have time or energy to meet up with the girls, or hang out with the gang.
The comments to her post were very supportive, and I discovered that several  of these people are not only SN parents, but they are all sitting on a branch of my very own family tree.   I commented to one cousin “I didn’t know you were in the club!”
It’s a club we didn’t want to join, but here we are.   Yes, there are a lot of benefits of this membership, but honestly, there is a heavy price that comes with it.
I can’t tell you what it’s like to have a full week of restful sleep.   Even if Buddy has a wonderful night of sleep, I have another night of light sleep,  always keeping an ear out, for doors opening, or tv’s turning on.
I don’t think I have ever left a IEP without tears and disappointment.
I jokingly say that I can change a diaper blindfolded…because I have been “diapering” for almost 27 years.
My son can’t verbally tell me that he doesn’t feel well, or he needs something …or that he loves me.
Buddy will live with me most, if not all of his life.
I have mountains of laundry…clean and dirty.  If you are looking for it, it is either, in the pile of dirty laundry,  in the process of washing or in the pile of clean laundry.   I cannot tell you how many pairs of jeans  Buddy has, or how many blankets he has.  But it seems like I am always buying more.
Sounds like a pretty steep  price to pay doesn’t it?
But what I get in return is so much more.
Last night my 26 year old son, not only slept safely in his room next to mine, but as I was getting him ready to tuck in, he stood up, smiled and grabbed me, pulling me to him, pushing my head to his shoulder and he proceeded to hug me for a good 5 minutes.  Now this made me think of 2 things.  1. he is trying to outsmart me with this distraction, so that I won’t turn off his TV yet….or 2. he is showing me that he loves me…honestly, I think it was both.
Even though the IEPs were often brutal, the meetings that he has now that he is an adult are so much more optimistic and productive.  I actually look forward to seeing the goals that he has met and how we can take the next steps.
Although I am certainly not fond of the diapering part, I do like that my son still needs me.  Not in a “Mom, can I borrow the car” way…but in a “My well being depends on you” way.
No, Buddy can’t verbally tell me something, but he and I have figured each other out and we communicate in our own way.  He knows that he can come to me, and I will figure out what he needs or wants.
The laundry situation isn’t so bad either…he always has fresh linens on his bed, clean clothes and that pile of clean clothes keeps the dogs off my couch.
Oh, and the very best perk of this club… Love, the purest most unconditional love you can ever imagine.  Call me selfish, but I like knowing that he will never love anyone more than he loves me…and the feeling is mutual.
If you asked me 27 years ago if this would be how I pictured my life, and if I would be happy with it….honestly, I would have said no.  If you had asked me when Buddy was diagnosed with autism at the age of 3,  is this how I  pictured my life, and if I would be happy with it… I’m not sure…I imagined it to be much worse.   If you ask me today???
I am very happy with my life. Do I wish that my only child could one day make me a grandmother?  Yes.   Do I wish that my hubby and I could pack up on a whim and go away for the weekend…yeah, it would be nice.  But most of my life’s accomplishments happened because I have and I am, trying to make a better life for my son and those like him.
And this is just the beginning!
~ASM

Non-Verbal Communication

Hubby and I took Buddy to town with us last week and we decided to stop at Denny’s to get lunch.

I cannot tell you how much I love doing this.  Mostly because 7 years ago, doing something so basic as going to lunch with Buddy was something that would cause me major anxiety, and quite honestly, we just wouldn’t do it.

This is one of the goals that I have to credit his care giver for.  She has been phenomenal, I think it’s because she is a foodie and takes Buddy to all of her favorite restaurants. And now he is a foodie too!

Anyway,  we took Buddy to lunch at Denny’s and when we got there, we had a 5 minute wait.  I kept whispering to him, “You’re doing great” “We just have to wait a few minutes” “I am so proud of you”.

We get seated and I sit on the outside of the booth and he is on the inside.  As we order our food and wait, I have my arm around him and I keep telling him those same statements.   I also turned on Spotify, because as we all know, music can be magic to an autistic.

Our food comes and Buddy eats every bite and a few of mine too.  Then as we wait for the check, he puts his arms around me and pulls me so tight to him that my glasses almost fall off my face.  As he kisses my cheek, I hear it, not with my ears, but with my heart.

My non-verbal son, just said “Thank you Mom, I love when you take me to lunch, and I love you!”   as he held me and kissed me again, I felt him say “You’re doing great, I am so proud of you!”

As we drove home and I pondered this wonderful experience, it occurred to me he does this every time I take him to lunch.  I think we need to do it more often!

 

~ASM