1) bug doesn't talk like normal children his age
2) k doesn't really say much more then Hi (to new people)
3) neither have any kid with kid social understanding
4) they both have strange behaviors
Often I have to give an explanation.
"This is Bug, he has autism, and this is k, and he has a global developmental delay"
The same result comes every time, out of almos every persons mouth
"Oh, I'm so sorry that must be hard"
And I always think the same thing....
Here we are again.
While I really appreciate the heart and care behind their concern I have to explain something to them every time.
"Thank you, but I'm not sorry do you don't have to be either."
Insert the startled looks.
But I am not.
Both my boys are disabled, different and down right strange in some aspects.
But dang, they are amazing!
I want to approach a topic with you. Of course there are some hard things about raising two disabled children. There are hard things about raising children in general. The hardest for me is when the children can't tell me what's wrong.
Second is the sensory overload
Yes these are hard, but other parents have hard things too.
Like (idk I don't have neurotypical children) but I would imagine that when your 4 year old tells you they hated you, that's hard.
Or getting time with them
Or when they talk back to you it's hard.
There are however 2 different kinds of hard here. See for me it's desperation not knowing what is wrong with my child we they are in a meltdown. For you it's not knowing how to make your child understand what you do you do out of love.
My sons, never have a flicker of doubt in their mind I love them. They never say they hate me. They never want to ignore me(any more).
When you hear about autism it's terrifying. It is. I was terrorfied. I asked my sons diagnosing therapist "does he know I love him."
See he was nonverbal back then. Lo those 18months ago.
You want to know why autism was so scary? Because it's scary for a different reason then the dx we have for k.
So do you know why it's scary?
ALL YOU EVER HEAR AVOUT AUTISM IS BAD. OR TERRORFYING. OR MEAN.
You never hear about the brilliant autistic writers, artists, doctors, carpenters, practitioners, home makers or anything else.
You never hear about the autistic social butterflies.
Unless you are IN the autism community these are not things you hear. So when I heard autism I saw what I had grown up seeing an hearing. You see my moms friend had an autistic son who also had a long list of mental disorders. His comorbid conditions made him a horrible threat to his family. Not the autism. The comorbid conditions.
So that's all I knew. That's it.
The fact is, as my son and one very specific autism community on Facebook has showed me, AUTISM IS BEAUTIFUL
Infact:
Autism is beautiful
Autism is hard
Autism is madness
Autism is genius.
Autism is energy
Autism is joy
Autism is strength
Autism is fear
Autism is loving
Autism is playing
Autism is habits
Autism is hobbies
Autism is power
Autism is trust
Autism is faith
Autism is a full life.
Autism is a big part of a person, but dammnit they are still a person!
My favorite quote:
To succeed in art or science it seems one must have at least a little spark of autism - Hans Aspergers.
Autism is scary. Until you know what autism is.
I am not scared of autism. I am not sorry my son has autism.
Yes k's global developmental delay is scary. It's scary because often k learns so slow. Often I don't know how to teach him. What will work. When will I find what will help him or what is causing his delay.
For the sake of this we will say GDD
GDD is unpredictable
GDD is quirky
GDD is not growing up to fast
GDD is big smile
GDD is warm hugs
GDD is frustration
GDD is flourishing
GDD is learning and changing
GDD is staying the same
GDD is bright eyes, smart kids and silly fun.
It's scary because much more often then bug i find myself not knowing how to help him. I get bug more then k. It's even been poised to me that I may be aspergarian, I don't know. I don't really care for a dx if I am cuz I'm comfortable with hi I am,
My point is: every child comes with their share of trials they and their parents must face. Don't feel sorry for me. feel sorry for parents whose children face cancer and don't make it, for parents whose children face Krabbe or Battens disease.
Feel sorry for those who have to watch their kids die. When I say this, don't feel sorry they had them, feel sorry we don't have cures for ACTUAL illnesses and fight to help find them.
What you can do for me is see my children's different ablilities are a part of them, and they are amazing just as they are. Be my friend let me cry and remind me how blessed I am. Tell me you don't know how to help, but don't apologize for who my kids were born be.
Thank you.
I have a beautiful family.
Beautifully unique.
I know God made them this way, and if you asked me, when he made these boys, he out-did himself ;)
I mean look at those faces!
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