Don't be a jerk.
Or an ass. Or a dick. Or the curse word of a choosing. Whatever floats your boat. I'm not telling you how to live your life.
But what I will say is it never ceases to AMAZE/HORRIFY me when family act like jerks to those in their family with autism and to their immediate caregivers. Seriously, what is with this crap? There's not a week that goes by where I don't get an email to my blog saying something along the lines of "My family does not get it. What do I do?" Or "We stopped getting invited to family gatherings because of our kid with autism." Or the one that really makes me hit the roof, "Our extended family invites our typical kids places but doesn't ask to spend time with our autistic ones."
Let's face it. You have to be a real special sort of asshole to invite the typical kid to something and purposely leave out the autistic one, while hoping like Hell that the parents either don't notice or mind. I will be the first person to admit that you have to know when to hold 'em and when to fold 'em when it comes to taking your autistic kids places. You have to be realistic. You're looking at a woman that scheduled her father's funeral around her son being in school because being quiet during a solemn ceremony would just not have happened and it was much better for the Kiddo to stay on his routine at the brand new school he had only just started a few weeks before.
But this shunning that I see happening far too much in families, that shit has got to stop. It's not just autism families I see this in. All disabilities seem to get a taste of this. Really? Aren't we all better than that? Have we not evolved well past sending all those with any sort of disability off to some institution. Never to mingle with the rest of the world again. Come on!
Now before you may go "But...but...but... We don't know how to be with those autistic kids. We don't know what they need or how to do it the right way." Well newsflash for ya, neither do their parents. Believe it or not we were not given a swag bag at the diagnosis that comes with an instruction manual. They're learning as they go. Join the class. Learn with them. They are the ones with them all the time. Consider them the smart kid in the class that you can ask to help you with your homework.
I'll even give you a little cheat sheet/Cliff Notes version on this. Planning an event where both autistic and neurotypical events might be tricky but it's not impossible. Clearly parents that have kids of each do it EVERY SINGLE DAMN DAY! Ask their caregivers what's the best kind of thing for all involved. That's all you gotta do. That's it. Ask. BOOM! Pretty easy.
And if you think you aren't hurting those kids both autistic and neurotypical when you do this mess, I can assure you, they know what you are doing. All kids can smell bullshit. Some might not be able to say it with words but I know that Kiddo can lay some side eye on a jerk that can make that person question all of their life choices.
If you are that autism parent/caregiver that currently has this happening to you, I'm sorry. It sucks. There is no excuse for it. At all. If your family won't change, well, family can be made too. Find your tribe and stick with #TeamQuirky. You know I'd share fries with you all any day of the week. My Kiddo might announce when it's time for you to leave because autism but you get it. You live this flappy lifestyle.
Now before you may go "But...but...but... We don't know how to be with those autistic kids. We don't know what they need or how to do it the right way." Well newsflash for ya, neither do their parents. Believe it or not we were not given a swag bag at the diagnosis that comes with an instruction manual. They're learning as they go. Join the class. Learn with them. They are the ones with them all the time. Consider them the smart kid in the class that you can ask to help you with your homework.
I'll even give you a little cheat sheet/Cliff Notes version on this. Planning an event where both autistic and neurotypical events might be tricky but it's not impossible. Clearly parents that have kids of each do it EVERY SINGLE DAMN DAY! Ask their caregivers what's the best kind of thing for all involved. That's all you gotta do. That's it. Ask. BOOM! Pretty easy.
And if you think you aren't hurting those kids both autistic and neurotypical when you do this mess, I can assure you, they know what you are doing. All kids can smell bullshit. Some might not be able to say it with words but I know that Kiddo can lay some side eye on a jerk that can make that person question all of their life choices.
If you are that autism parent/caregiver that currently has this happening to you, I'm sorry. It sucks. There is no excuse for it. At all. If your family won't change, well, family can be made too. Find your tribe and stick with #TeamQuirky. You know I'd share fries with you all any day of the week. My Kiddo might announce when it's time for you to leave because autism but you get it. You live this flappy lifestyle.
In the immortal words of George Costanza....
Thanks so much for posting this. It's the one issue that still devastates me year after year. My son has 11 aunts and uncles, all of whom have chosen not to have a relationship with him. He has 5 grandparents who have a minimal relationship with him. I will do ANYTHING for my son. I'm the VP of the PTA, just so I always have a reason to be at the high school. I tutor him after school every day and all summer long, so that he can earn a real high school diploma. I teach him life skills, get him out in the community, sit in the front row at church, exercise with him, whatever it takes to help him learn. And you know what? This was the easy part. Now we've got adulthood ahead of us with no family support and limited services. I just don't understand how family members can think it's OK to reject a child. That was never even an option for me.
ReplyDeleteThank you for this. Amazing how folks can reject a child (and the rest of the family.) And yes, it damages the neurotypical kids, too. They see it and know that if they choose to be loyal to their sibling, they won't have a relationship with that aunt, uncle, or cousin. And if they go play mini-golf with Aunty Bitch and Uncle Spineless, they feel like they've betrayed the kid left home. It's awful.
ReplyDeleteI'm used to it, but I'll never accept the fact that my family and even my now ex husband excludes my autistic autistic daughter that lives to be included, but is left behind with me! I am deprived of a life due to these ignorant inconsiderate selfish people in my family, Even my so called friends do it to us... they have no clue what a fun happy and selfless person my daughter is, she's now 17,her father and I divorced because"he needed his freedom"!! After being married for 30 years and 4 children and me supporting him during his 30 year military career... he decides he needs to cheat on me, go out to bars, strip clubs ,golfing... because I deprived him of his freedom... F them all!
ReplyDeleteI feel for everyone who deals with this. Perhaps you can write a list of things to do to make sure to include special needs families.
ReplyDeleteWe are so lucky because I know all my family listens and gets it, but I've heard bad stories from other families too. It's people with very narrow minds, generally people who are quite selfish, who don't listen and think. For some, friends are better than family. You can choose your friends :)
ReplyDeleteEh, there's often (not always, often) a personal responsibity component that parents of kids on the spectrum elect to overlook:
ReplyDeleteRelationships are reciprocal.
As a club spectrum parent, ask yourself:
1. Do you (usually) return phone calls?
2. Reciprocate dinner invitations?
3. Constantly cancel at the last second (doubly so if special arrangements have been made to ensure the team quirky kid can participate)?
4. Considered whether your kid is a jerk? There are delightful kids on the spectrum (and not on the spectrum!) and jerky kids on the spectrum (ditto NT kids)... and the former garner faaaaar more invites.
Oh my gosh Kate/Tom/Or one of the other hundreds of accounts that you have. How are you? It's been so long since you have trolled me I was getting concerned for your welfare. Now, I don't mean to be pain but you did leave out your usual "Poopy Picaso" one liner in this comment. Are you okay? Or just forgot?
DeleteI sure hope that one day you get that hug you so desperately need. Find some happiness perhaps. Or a hobby. Oh wait,I forgot. You're busy raising your autistic nephew ergo you have to displace all your anger out on on other autism moms online. Damn, you must be busy gal or guy. (Sorry. I'm not sure. You have so many profiles you create.)