Sunday, January 24, 2016

Open Letter to Grandpa

Dearest Grandpa,

You and your family are facing the diagnosis of a loved child with autism. I know you probably expect me to send you my sympathies, but that's not going to happen. Not because I don't sympathize with the journey you're about to take, but because it's not the tragedy that it seems. You see, autism is a neurological condition, not a disease. It's not an injury. It's not critical or life-threatening or terminal. Your family will never have to watch your beloved son and grandson endure endless surgeries and medical treatments that seem worse than the disease itself. You won't have to sit next to his hospital bed, watching and waiting and praying he makes it through the night. You probably won't have to bury him much too young. That's not saying that the road ahead is going to be easy, it just won't be tragic.

Now what I can remember of the times right after diagnosis aren't going to apply to your family. Thankfully, in the last 18 years, while the diagnostic rate of autism has skyrocketed, so has the research, training and understanding. More is understood about autism, more is understood about the nutritional aspects, therapy, and education. Teachers, aides, diagnosticians, therapists and doctors know more now than they did when I was just facing what you're facing now. Paths of therapy have been blazed, you will have access to more help and support, more options and a much broader future.
It took almost a year to find a doctor who could give me answers, and when I got the answers, it was an uphill battle to find support and education. To find therapists and teachers and support staff, and then to find training for them. In the last 18 years, great strides have been taken in developing programs that support and integrate autistic kids into the mainstream. No longer are they warehoused in rooms far away from their peers, isolated and stagnant. Now there are school programs, and after-school programs, and transitional programs. There are support departments in colleges and universities to help students on the spectrum access higher education.

The key right now is to not see autism as a limitation, but as an alternate route. Yes, you and his parents are going to have to adjust your dreams for him a bit, but you don't have to completely scrap them. Gone are the days when doctors break the news with the advice to abandon all hope for any type of productive life. Understanding Autism is a Broad Spectrum condition is key. There is a broad variety of symptoms, on a full scale from minor to severe. What this basically means is if you've seen one Autistic child, you've seen exactly ONE Autistic child. Both of the Cute Chicks are Autistic, and both are distinctly individual in their challenges and talents. Teen Queen can talk, but not hold in depth conversations or answer direct questions (her interview with her lawyer for custodial guardianship, "S., do you want to live in your own apartment?" "I don't know." "Do you want to live with your parents?" "I don't know." "S., what do you want?" "Banana cream pie." End of interview.) She loves sports and has a talent for statistics, organization and problem solving. She's a visual/tactile learner. Her limits are frequent and somewhat violent meltdowns that we're working on. She needs to work in a quiet environment with limited human interaction. Baby Queen is nonverbal and resists using sign language, PECS (picture exchange card system), or iPad. Does that mean she can't? No, she just refuses. We have a theory that she hasn't found anyone smart enough to understand her communications. BQ's strengths are an uncanny knack for reading people. And for blatant manipulation. She's the HBIC (Head Baby In Charge), everyone does her bidding, which is remarkable considering her lack of communication. My nephew is high-functioning/Asperger's. He's socially clueless, but learning. He's brilliantly creative and published his first graphic novel at 16. He found out SyFy Network's "Z Nation" was being filmed near his home in Spokane, found out how to get his SAG card, put together a resume and portfolio and then asked his mom to take him to the auditions. He's been a zombie extra in every episode of the first and second season. He even helped his little brother (not on the Spectrum) become an extra. The point is, be open to your grandson's abilities. Don't shut down any possibilities. Don't focus on his weaknesses or challenges, just work to creatively handle them.

Understand that, like any neurotypical child, your grandson can become great and wonderful things, can have a full, happy and loving life. You may not get to fulfill all of your dreams with him, he may not be everything you'd imagined he could be. You just need to be open to who he can become and the fantastic journey you will take together. Your journey will be full of love and frustration and laughter and tears and patience. I can't stress that enough. Patience and a good sense of humor will be your most valuable tools. Let go of the old dreams and expectations. I actually had to go through a "mourning" period after getting the girls' diagnoses, an adjustment from the children I thought I'd have to the kids I actually have. And when you start thinking "small", review some names of autistic/Asperger people:



And even possibly:


17 comments:

Volfram said...

I've noticed a difference between how some of my friends address situations and how I address them. Some(not all) of the people I know will spend time strategizing and weighing and adjusting the field as much as possible to give themselves an advantageous beginning.

I do not.

Some of my friends, in gaming and in life, outfit themselves with the best possible equipment, and pick the best possible location.

I do not.

I think the situation is that when it all comes down to the wire, these people think that the things they have will be able to make up for their shortcomings, that they need their equipment and situations to be able to win.

I do not.

If I didn't win a conflict by my own two hands, then I didn't win. If I can't beat a challenge with no equipment, then I can't beat it.

Your circumstances can't lift you up or hold you back. The only person standing in the way of your dreams is you.

wirecutter said...

Great post, Angel. Fantastic.

Terry said...

Wow, what a wonderful post.
Terry
Fla.

Anonymous said...

True Autism is very rare. Something like one in 10,000 births. The rules and definition were adjusted to make it look more common. This was done for 2 reasons. To get funding for research. And for parents who are too lazy or stupid to rear and discipline their child to hide behind Autism.

hiswiserangel said...

Anon. you have an open invitation to come live a day in my home. Anytime. And then tell me how lazy and stupid I am. And I know my brother and sister-in-law will welcome you into their home. Or any of a dozen families I know with kids all over the spectrum. But I doubt you could handle it. You don't even have the courage to post with your name. Or even your screen name.

Sara said...

Wow, I am amazed at the size of the keyboard balls of Anon. Sit in your happy place and bash what you know nothing about, sounds like a great idea for your typical troll.

Great post Angel.

hiswiserangel said...

Thank you, sweet Sara, super duper big hugs to you!

Anonymous said...

As always, Wise Angel One, I am in awe of the depth and breadth of your knowledge, and of your love, for your own, and for others. As for ol anon there, not fair for you to engage him in a battle of wits, as he is only half equipped.......


vaquero viejo

pigpen51 said...

Angel,
Anon is an ass. You have my respect and compassion.

Anonymous said...

Special K, is that you?

Absolutely incredible Angel, speaks volumes about you and your character.

foodgrower

Angel eyes said...

Wonderful post, dear heart.
And anon is welcome to come live with a schizophrenic kid like I do.

Anonymous said...

While the ass anon is correct that in the last 20 years they have loosened the definition of a lot of disorders, created new ones and taken some away; he has no idea what he's talking about.

Yes I have met people who loved having a disabbled child for the SJW street cred it gave them, but nothing Angel has ever said would even suggest she is in that category and her general outlook suggests she is the antithesis of that outlook.

Exile1981

Anonymous said...

great post Angel...

i think foodgrower nailed it


livin to ride

WiscoDave said...

You are an amazing and courageous woman.
Your daughters, and the rest of us, are blessed to have you.
Anon is an ass.

rickn8or said...

Great post Angel. Anon IS an ass.

My two oldest grandsons (12 & 10) were diagnosed early with Asperger's and due to a LOT of work by their Mom and Dad, have made it into the mainstream.

To see what it's like from the other side, you might consider "Look Me in the Eye" by John Elder Robison, who wasn't diagnosed until adulthood. (http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307396185) This was after he'd been part of Kiss' road crew, coming up with all the special effects for the various band members' guitars (bursting into flame) and designing their amplifiers for a unique sound.

Lisa Lane said...

Miss Leslie, as you know, I call you Super Mom...I would have been lucky to have you...You fight harder for the CuteChicks, eat, breathe and live for information and knowledge to help them than any person I have ever seen. Now we can start talking about heart...but it's apparent that everyone here already knows how strong and steadfast yours beats! You rock chick!! Love to you! Be Proud and Loud!

ladygrey said...

Just catching up, what an awesome post, Angel. As for Anonymous, he can kiss my and your a.
My god son is a high Asperger, up for Sargent after less than 3 years and 3 tours in Army. I teach STEM elementary. Some of my autistic kids are my best students, best behaved, and care the most about learning. God bless you for raising your daughters and standing beside your family. Your post was wonderful.