His Hopes & Dreams

His DreamsThe other day, The Man, The Boy and I were riding around as we are wont to do on the weekends, and we happened upon the local agency that employs young adults with intellectual and developmental disabilities once they’ve aged out of public school. The Man and I explained to The Boy what the young people with autism and other issues did inside the building. “They put together candy bouquets, do laundry, all sorts of stuff, and that’s their job,” I explained. “Isn’t that cool?” I asked.

A pause from the back seat, and then, “Can you be a band director there? Because that’s what I think I’d like to do.”

My heart just about broke while I was trying to find an answer. The Man responded that to be a band director you had to go to college, and in order to go to college you had to listen to your teachers and do all of your homework because that would be a lot of hard work. “I do all of my homework and listen to my teachers,” The Boy replied. “Ok,” we said and the subject naturally wandered in other directions as we drove on.

Could The Boy go to college, earn a degree, teach his own classes someday? Quite possibly. Don’t for a second think that I doubt my sons abilities.

What I doubt are the supports he would need to get there and our ability to afford those supports that are not in place. Realistically, colleges are not yet equipped for our kiddos (Hell, his middle school is not yet equipped…). And neither is the real world.

So how do I go about tempering my boy’s dreams, when it is the very last thing I want to do?

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Delayed Gratification and Rewards in Autism

The Boy loves his iPadRewards and Motivators are how we roll in autism land.  If you want Bucky to do his math work, you gotta give him something in return.  That’s just how it works.  Whether it’s a break, a walk, a starburst, a handful of goldfish… whatever works, baby.

Fast forward to an adult on the spectrum trying to find meaningful employment, whatever that looks like.  Hopefully it is something s/he is interested in, but if not, how does it work?  Bucky wouldn’t do his math without a starburst, so will his employer ply him with starburst to get him to work as an adult?

My kiddo doesn’t understand money, and more than just the concept that it doesn’t grow on trees.  He has a hard time counting change, and instead has been taught that if he is at the store and needs to pay $4.88, he should give the cashier a five dollar bill.  He doesn’t really grasp that $150 to fix an iPad screen is a hell of a lot of money. And even though he understands that you need money to buy things, he doesn’t understand needs versus wants, and if left to his own devices, might very well decide to purchase another 3DS game rather than pay a phone bill.

He will need some assistance, and that is obvious.  But he will also need some motivation to do his job.  Therefore, as we look forward to transitioning (I know we have several years, but it’s good to be aware of where we are and where we’ll need to be), we will have to work on making sure the things we use to motivate him are growing like he is.  And we will have to work on the delay in gratification, because one does not receive a paycheck every minute, hour, or day.

This is the type of thing that isn’t intuitive for me, and that I will have to train myself to work on with him.  Everything is a process with autism.  Everything.  And nothing goes in a straight line.  A convoluted process, I guess.  We learn everyday, we fail everyday, and we try everyday.  Now to develop a plan…

Inclusion, Exclusion, Seclusion: What’s Ideal & What’s Real

Where will my boy live when I am gone?

Where will my boy live when I am gone?

I recently saw this post on FaceBook about a planned community being developed in Florida for adults with developmental disabilities.  It’s a gated community designed to foster independence, while keeping residents safe.

Immediately, I realized I had two simultaneous opinions about this.  One little voice said, “Wow! What a great idea! A place where everyone will have the assistance they need, the independence they deserve, and the safety that we parents worry so much about.”

The other little voice said, “Separate but equal,” and that statement conjured all of the negative connotations associated with  that phrase.

April will soon be upon us, and whether we are looking for awareness or acceptance (or both!), I can tell you we’re not looking for exclusion from society for our kiddos.  I have always taken The Boy out to eat, out to get groceries – we’ve never hidden from the public eye, because he needs to experience the real world, and the real world needs to experience him.

But the reality is that the world is not really set up for young adults like him yet.  Under-qualified staff are hired to monitor group homes, that are often underfunded and inadequate for those seeking to live a meaningful life as independently as possible.

So, if reality is not progressing fast enough, do we sacrifice our kids, and try to force the round peg of our ideals into the square hole of current supports for adults on the spectrum?  Or do we sacrifice our ideals a bit to get our young adults the supports they need, even if it isn’t in an ideal placement?

I don’t know the answer. I think we keep fighting for the ideal, while hoping that we’re not considered hypocrites for wanting our kids to be in a safe and supportive place.

Labels: Ain’t Nothing Wrong With Being Special

I saw a post on Facebook the other day with a picture of a young boy, and the words, “I have a disability. I need love. I need to play. I need friends. I need an education. My needs aren’t ‘SPECIAL.'”  It originally came from the Wyoming Governor’s Council on Developmental Disabilities, and on their main page, the group describes their “I’m Not Special” campaign, relating use of the word, “Special” to the use of the r-word, citing that many in the DD/ID community are offended by the term “special”.  The page goes on to say, “The label of ‘special’ in reference to a person with a disability does not convey equality. Expectations for success should not be underestimated to accommodate the ‘special’ label that is associated with people with disabilities.”

A picture of a rubber duck wearing a nametag, ...

Feel free to chime in below, but here are my thoughts.  The “I’m not special” campaign??  Are you kidding me?  Yes, THAT’S what I want to tell my son.  “YOU are NOT special, suck it up.  You are just like everyone else, and I expect you to do the same as everyone else with no support.  Stop using your autism as an excuse.”  That’s what the name of that campaign says to me.  Here’s what’s true: one of the tenets of special education, and educational law in this country is that you need to throw out the word “equal” and replace it with the word “equitable”.  Because the reality is that some people need more help, than others, and some kids cost the school district more than others – they need to have equal access to the curriculum, so the school has to take an equitable approach to ensure that.

And for the record, I don’t like the word “disability”, but I haven’t formed a task-force and anti-disability campaign.  My son has plenty of abilities, and has deficits in certain other areas, but he is not dis-abled.

The truth of this is that our kids with special needs do have special needs.  They are not typical children who can bathe/dress/feed themselves, or pay attention in class themselves, or do homework by themselves.  My child needs supports to be able to show us his abilities in certain areas.  He is able, but needs some help.  He is special, much like any child is.  And he is equal in worth to anyone else.  He can be all of those things – they are not mutually exclusive.

I also saw this pretty neat news story on Facebook.  That little girl’s flute sounds the same as all the other flutes, but it works differently, thanks to the special design of Mr. Woody.  Her flute is not less, but it is special.