THIS is what we should be talking about. Not lighting it up blue, not talking about how neurological differences are au-some…. THIS is what we should be talking about. I thank my lucky stars each day that no noses have been broken yet in our home— nobody has been hospitalized yet. My twins, indeed, are the HIGHEST functioning children of parents in this facebook group to which my friend refers in her post. But I fear for the future……. if things worsen and my kids get bigger and stronger than me. I know for certain that my son would have been put in residential treatment years ago if not for the therapies and medications we’ve tried thus far. My goal in life is to keep my kids home with me, regardless of well meaning friends’ comments “you can’t live like that! Send them to live in a treatment facility!”
THIS is an au-some post. Yes, the term au-some is fine. Just don’t tell me that autism is au-some because it’s NOT.
Autism Awareness (Photo credit: Wikipedia)
REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH SPECIAL NEEDS PARENTS:
1. Some of us have given up on social skills and don’t care what we say or do.
2. We’re not afraid to have A serious “meltdown” of our own.
3. We are tired and all the patience we have is for our kids.
4. We have a far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.
5. We can get you in a hold/lockdown position in less than 3.5 secs.
6. We can shoot you a look that would make a linebacker tremble in his boots.
7. Chances are it’s been awhile since we’ve had a full night of sleep and that will give us a reason to plead insanity.
8. Our tolerance and patience is for our kids who didn’t choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.
9. We’re probably already on edge and it would be stupid to push us over.
10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?
11. We’ve had to fight from the moment of our child’s birth so by the time you piss us off we’re seasoned battlers and could win a war.
12. We devote our lives to our children and don’t need more stress and people who don’t understand our life.
13. Wherever there is a cub, there is a mama bear or Papa bear…We’re always watching.
Yet again, another of my autism mom friends writes exactly what I’m thinking and what I’d love to find the time to write.
Rest in peace, Drew Howell. Owen Black. Mikaela Lynch.
Just re-reading some fun autism posts I’ve got saved in my bookmarks and I just have to share this one….. it ROCKS.
We’re Expecting………… SNOW this week! Hooray!
In all seriousness…….. we conceived the twins through IVF. They are our only children and they both have special needs. So of course, the question is…. will we have more children. Would we like to experience parenting a neurotypical child? For the next 3 years or so, the answer is DEFINITELY no. We don’t have health insurance. We’re completely overwhelmed. We’ve hit a rough spot because I just don’t have the time to work enough hours to pull us up from the financial rough spot. In 3 years I’ll be 42 years old and that will be my last chance in my opinion. I’m not giving up on the frozen embryos just yet just in case a transfer is in our future. But it’s at least three years away.
I just wanted to note this post from my blogging friend.… it’s beautifully written and the undercurrent in everyone’s thoughts as our special needs children get older, even when they don’t say a word is ……”is she done? why? why not?”
What about you? IF you choose to share….. if you’re a special needs mommy, are you planning for more children? Why? Why not? It’s an invasive question—- ignore it unless you WANT to share.
I get it EVERY day. “You should talk to _____. Her son is on a gluten free diet and now he’s toilet trained!” “You should talk to ___________. Her daughter goes to (name xyz special school that costs a million dollars here) and is doing great!”. My favorite was when I was told to talk to _____________ who is a frum mother with a son with autism. I was told she’s a great resource and knows how to get a lot of help from the board of developmental disabilities. I knew nothing about her son. I called her up. Turns out her son is a teenager— not verbal, not toilet trained, sent by the district to a special school. So the board of DD gives her daily respite support. Great. When your kids are higher functioning (my twins will be 6 in January and are verbal and are toilet trained/training) you cannot get the same amount of support no matter how hard you beg. The board of developmental disabilities feels they’re too high functioning. SSI feels they’re too high functioning. The school district feels they’re too high functioning to be sent out of district “oh, we can handle their needs right here!” (sure, stick an ISA on them and call it a day.)
I couldn’t possibly write any better than my friend here about this concept—- people telling us they know a kid with autism who……. — please read this, it’s good stuff.