I realize not everyone celebrates Thanksgiving around the world. However, I would be remiss if I didn’t do my annual “Thank you” post.

1. I am thankful for my family. My husband and kids are a large part of my life. If not for them, I don’t know where I’d be today, but I’m sure it would be dark and nasty.
2. I am thankful for my job. I love being able to help people and inform people from behind my little laptop. I’m happy that I’m able to work for such an awesome organization. I’m happy that I am useful to someone other than my family. The feeling is amazing considering how long it’s taken me to find my career.
3. I am thankful that we have a home and cars and most of our worldly possessions. I know I complain about this apartment sometimes, but it beats most of the alternatives.
4. I am thankful that  you all let me into your lives whenever I decide to post. I know I don’t have nearly the time I used to have, but you are all always here to give me a boost and say a kind word. So I am thankful that you are all such wonderful people.

Sorry to my Autistic audience… this post is meant for the non-autistic parents in my audience.

——-

This is a conglomeration of thought based on several things I have read and conversations I’ve had recently, and quite honestly, for the past few years. Kassiane‘s blog post was repeated on TPGA and speaks about self-advocacy and autonomy even at a young age. Laurent Mottron’s commentary in Nature has been widely circulated with a quote from Dr. Mottron stating

As a clinician, I also know all too well that autism is a disability that can make daily activities difficult. One out of ten autistics cannot speak, nine out of ten have no regular job and four out of five autistic adults are still dependent on their parents. Most face the harsh consequences of living in a world that has not been constructed around their priorities and interests.

**bold emphasis is my addition

A recent conversation with a person discussing ASANs Navigating College handbook lead to talking about how to get something similar going for parents to help their child be more independent in preparation for transition. Then there are my continual lingering thoughts about nonPariel, which in my opinion is nothing more than a day hab, sheltered workshop with plans to include an onsite group home/institution for those considered by those who created it to be “high functioning.” If you’re wondering what all of these have in common, prepare to be enlightened.

First I will start with the statistics that Dr. Mottron said. 80% of all Autistic people are still dependent on their parents. I’m sad to say, I’ve got anecdotal evidence of the same.

Then on to nonPareil which was created by parents who were worried about their children’s futures. They don’t expect them to have hopes for independence so started a program directed to where they will be at transition age.

Next is the discussion about a guide for parents to help create independence. So many parents realize their 17 yr old is about to be 18, and adult and they scamper to find what they can do to help their child. This is a discussion I’ve had with more than one person over several years.

Last is Kassiane’s blog post about showing autonomy to a young boy 9-10 yrs old. How he was never shown that, which is not that uncommon.

I worked for a company into this April where preteens and teens with “HFA and AS” got together for social activities twice a month. So many times, parents said their children couldn’t be trusted to help cook. One boy even hit himself in the face when he was upset with himself and people let him use that it was a part of his condition.

What is this all getting to? Are you a parent that is helping your child be independent or are you standing in their way? If your child is in middle or high school, are they allowed to make mistakes like their peers are? If your child is in elementary school, are your children allowed to make any of their own food?

Do your children have responsibilities that they must do? And how about entrusting them with money? If your child is young, does he have to put the dishes in the dishwasher? If your child is older, does he know how to do his own laundry?

These are all life skills that really build onto each other. So when I hear a parent has waited until their child is 15, 16, 17 to ask “What does my child need for transition?” I always think that the parent has already waited too long. When parents say their child can’t do something, I always ask why. If it’s maturity, then what are you doing to increase his/her maturity?

Like I’ve said before, we use ChorePad HD to help with all sorts of skills. But it doesn’t serve just as a reward system. There’s saving and practicing and growth to learn new things. Daniel, who most would think couldn’t grasp the delayed-reward system, does.

So why not try it with your child? Even if you don’t have an iPad, you can go pick up tickets at the dollar store (Dollar Tree has some). Like those older carnival style tickets. And you get to give tickets for things you want to praise, and remove (if your child is ready) for things that were harmful or disrespectful. It’s the same idea. They can save up to something large while still spending for small things, like 30 min on games/the computer. (A good way to recoup those tickets is adding a goal of “No protest getting off electronics which teaches another skill. And make sure you have a timer that they can read!)

If this sounds preachy, I apologize. But part of having a self-advocating, autonomous adult is allowing them to make their own mistakes, teaching them skills to increase their independence and allowing them to make their own decisions.

There is something to be said about inspiring, upbeat blogging. It creates a sense of worth in all who read it. Last year, what I wrote, I felt was inspiring and upbeat looking at all the representations of this thing we call Autism.

What I have lived in the year since then has shown me something new. Resilience.

After a car accident that’s left me crawled up in bed for days… after a move into an apartment… after failed attempts to keep my boys in ‘their’ school… after joining the employed ranks at ASAN… I have continued to drive forward.

For those that know me, it’s pretty plain to see that I’m completely overwhelmed, overworked and over-extended. To those who just take a glance, I appear together, thriving and tenacious. The truth is, I’m both. I must be both. I have a drive and need to be the together, thriving tenacious person, but it will always leave me overwhelmed, overworked and over-extended.

Those who see me as the together don’t question what I’m doing it all for. Those who see me over-extended don’t question what I’m doing it all for. There is a future for us all, but only if people DO over-extend themselves. My therapist says it’s because I’m a Type-A personality, that I have unrealistic expectations of myself. And she is completely correct.

But I ask those who do doubt why someone like me, who really cannot “handle it” all, who needs to take 30 minutes of break time for every 10 minutes of work, would continue to persevere. Why would I have these unrealistic expectations for myself and for humanity as a whole? Because if I don’t, I’m bound to sell myself short. And you would be bound to sell me short. And then my children would be bound to a life of never dreaming and never rising above.

I do it for me, those like me and for those who will come after. Because if I won’t do it, who will? The person that can handle it? That only teaches the disabled and Autistics that they can never or will rise above.

This past year, I have seen many struggles… But I have also seen that I can get through them, with a lot of support… with a lot of effort… and some very high, unreachable expectations.