Tag: Putting autism in perspective

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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
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I Have Come to the Conclusion That My Son is a Millennial…

He is a multi-tasker: He likes to watch TV, listen to his headphones and play with his vast collection of airplanes all at the same time.

He is connected: he would be devastated if the satellite  were down or if we didn’t have an emergency iPod.

He is Tech-savvy:  He can find the buttons on most devices and figure out how to get them to work in his favor.   Also known as  “The Button Pusher”

He wants instant gratification: When he wants something, he expects it immediately.

He believes that everything should be shared:  Especially if food is involved.

He is team-oriented: He cannot go anywhere without someone going with him.

He is over 25 and still lives at home, with no desire to ever move out.

So, I have come to the conclusion that it’s not autism…he is just a millennial.

Oh yeah, he thinks he is the center of my world…well, yeah, he has me there.

 

~ASM

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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