Tag Archives: independence

Money Matters

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We have rekindled our love for independence skills!

A couple of weekends ago, The Boy and I knocked out a whole bunch of our remaining tasks from The Independence Challenge we started last year in one fell swoop by planning, shopping for, preparing, cooking, and presenting a meal to Grammy, Poppy and The Man. With help, he made a big pan of baked pasta with meat sauce, salad, and bread. By the end of it, I could tell it had been taxing to stay on task for so long, but he had been a trooper.

Last week, we sat down with some fake money I had purchased on Amazon. I printed up some imaginary bills from a cell phone company, the cable company, a car finance company, etc. and we sat down to talk about money. I gave him a paycheck for being a professional tuba player (his choice of career), which he exchanged for dollar bills. I presented each bill, and we counted out the bills necessary to pay them. I kept remarking about how much each bill seemed to take from that big pile of money. When all the bills had been paid, there wasn’t much left, and I reiterated that that was why you couldn’t just spend what was in the bank willy-nilly.

We also discussed which bills were absolutely necessary and why. “You have to pay for your car so you can get to work,” he said. Exactly. “But maybe you can reduce your phone bill by not using a smart phone or something if the bill costs too much,” I explained.

He seemed to understand and enjoy the exercise. Again with most of these activities, these are just an introduction, but it gives us a basis for further exploration. And this one may be the end of the notion that I can just go to the bank to get more money to buy a new computer 😉

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Paint Chips

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The Man and I have both been trying to get The Boy to do a little more around the house. We finally completed several of the Independence Challenge prompts, getting The Boy to plan a meal that he would make for us (pizza, what else!), go grocery shopping for supplies, follow the directions, prep the ingredients, and cook the meal. But it took a lot of prompting.

While at the new house the other day, The Man was working on getting The Boy to water the newly planted sod. He needed him to stand there and soak the same area for a couple of minutes, and even that was difficult for The Boy to attend to for too long.

It’s a struggle, and I often worry about his future in moments like these. Will he have the patience to follow directions at a job? Will he be able to work independently without someone hovering, saying “No, it needs a few more minutes of soaking”?

https://www.flickr.com/photos/vanhoosear/24787619731/in/photolist-DLp2KZ-5xuioL-4eT3U-4W8ov6-cAxrbA-attWhH-97iCs8-ny7zGA-h4EMTf-aiF3Gc-c5aE2A-aC675a-6oE9kA-6Rg68S-bwT7eM-9E1W1R-8AnZD8-ftHg8g-pzSyRq-aC67kP-46FHiq-6fAwKJ-6Rc33V-uVWLG-97gpEp-4W8oHK-qs84Wn-7YNfA6-dLSzms-aCUMBY-mSAkXk-ecdUN2-c9gPfo-95seiy-4QsLC7-9ijb8D-atJ7Md-dUNmfn-9vu83H-61zeUH-qfXTXe-8cmoop-cyjKzy-7PKT9S-7di6cE-9vG7Jo-qGF3v-8FPySB-6Rc3Jr-8ivZMh

Paint Samples by Todd Van Hoosear

We are in the midst of painting the interiors of the new house, and struggled to find the right color, buying five $4 samples before we found the right one. Many trips to the home improvement store, sometimes with The Boy, but often without. We stopped after I picked him up from Grammy’s one night to get a fresh batch of paint chips for possible colors, after the one we had thought would be perfect was much too yellow. I was trying to be quick because we had groceries in the car and it was hot outside. Suddenly, I looked over at The Boy, and realized he was sorting the paint chips into the right slots and straightening them. No one had asked him to do it. He saw that it was kind of a mess, and he felt compelled to bring into some semblance of order.

It gave me hope. I’ll never have a definite answer to my questions about his future until the future becomes the present. But moments like this allow me to see the possibilities, and that’s enough for now.

Get Out of the Way

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As The Boy gets older, I fret about what he should be able to do, what he should learn so he can live as independently as possible. The Man and I know that he will be living with us for quite awhile (and to be truthful, I haven’t even considered him moving out to another, more independent situation yet), but we do a lot for him, and we need to stop.

When The Boy was little, he went to a lady’s house for daycare, and she was amazing. She was one of the kindest people I’ve ever met, and the lessons she taught him as a toddler still stick today. I will often find his socks in his shoes, as he was taught to do there at her house.I forget, sometimes, that I can teach those lessons that need to be taught, and they will stick because he is more of a sponge than I give him credit for.

It's not just laundryA couple of years ago, in an attempt to get him to do some chores, I tried to teach him how to fold and put away laundry. I still have him put it away for me (sometimes), but I do most of the folding. The other day, he happened to come into the living room the evening I was folding, and for some reason, The Man had turned Spongebob on – a rare occurrence. The Boy plopped on the couch, and I started handing him socks to match up. He not only matched them up, but balled them up the way I had taught him to do it. No prompting, nothing. He just did it, and with no complaint.

I must, must, must remember to get out of my own way, and provide him with these opportunities to practice and learn, and even allow him to help me a little. He just keeps getting older, darn him, and if I just let go a little, he will surprise me. I just know it.

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

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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.

Posting Embarrassing Stuff About Our Kids on the Spectrum

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So many times I see something on Facebook or twitter, and without me realizing it, it starts me thinking. Thinking leads to writing, and then when I want to refer back to what triggered the thinking, I have no idea where it is, was, or will be.  I apologize for that because I feel I should link back to the source, and if I find it, I will. Sometimes I wonder if its better not to include it, because I don’t want to criticize anyone in particular, just highlight my take on it…

The other day, someone posted on Facebook about how we autism bloggers have a responsibility to our kiddos not to post embarrassing stuff about them on our blogs.  Things their friends may read, things no one would really want posted on the world-wide inter webs for everyone to see.  This is what started me thinking.

This person pointed out the distinction that some blogs take great pains to mask the identity of their kiddo, as I feel I do.  No clear pictures of faces, no names, no locations.  There are people who know The Boy directly who read this blog, but they are all adults who care about him as a person, and would never think differently about him no matter what I posted.

I did a mental review of the types of things I post and could only come up with a handful that might be considered embarrassing for The Boy. And I started to feel a little guilty despite the fact that none of his friends would be able to know this blog was about him.

As long as his identity is a secret, he can do anything!

But I thought some more.  Mostly about why I started this blog in the first place.  It really is astounding when you hear people’s stories about getting “The Diagnosis” – in every single one I have ever read or heard, they felt like they were handed the information and ushered to the door with a “Have a nice day!” and a door slammed in their face.  This is apparently still a problem.  People are given this life-altering information and no help.  I started this blog to share my experiences, so that we could navigate this thing called autism together, so that there would be somewhere someone could go to find out more than what’s in the pamphlet you’re handed as the psychologist turns to the next patient to diagnose.

And some of that stuff is embarrassing.  Our kiddos have deficits in areas neuro-typical kids don’t have to worry about – potty training until 5, or 7, or 12, not knowing bathroom etiquette, puberty… Yes, it’s not stuff a typical kid would like plastered all of the web.  But you have to balance that with the community’s need for strategies, their need to share, their need to brainstorm.

I hope I can walk that tightrope of sharing without invading my son’s privacy.  After all, I am his mom, and capable of making lots of decisions about his life.  As he grows older, I do need to get out of the way and let him advocate for himself and have some independence, but in this case, I think he would be all for helping someone else like him who was struggling, as long as I continue to maintain his anonymity.

This is a grey area for sure. And I may not be right, but it’s the best decision I can make with the information and values I have at my disposal.  Thoughts?

Vehicles and Freedom

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Fargo Pickup Truck by John Lloyd

Fargo Pickup Truck by John Lloyd

For the past month, The Man and I have been sharing a vehicle.  If you have ever had to do this with a spouse or significant other, you already understand that this is a true test of any relationship.  Luckily, I think we passed the test, but it was definitely not easy.

In our country, our cars are our own private spaces, and because our society is still so vehicle-based, it is hard not to feel isolated when you don’t have a car of your own.  I got a little testy when he changed some of my pre-sets on my radio.  And then his “stuff” was in my storage spaces – his work notebook, and his little flashlight, and his receipt book…  every where I turned it was no longer my car, and it irked.

He had sold his old truck for a great price, thinking he would go out and buy another with no problem.  And then we hit a snag, and had to re-adjust our search parameters, and several weeks had gone by.  He needed a truck for work – there were jobs he couldn’t get to because he couldn’t haul large loads in my little wagon, and the search continued.

In the meantime, we settled into a routine – he would drop me off at work, and come back to pick me up at the end of the day.  We would both then go to my parents’ to pick up The Boy.  It was a nice time to connect with each other, a pleasant way to start and end our work days.  I enjoyed it.  I really did.

But I still missed having my car.

We had to do things like grocery shop together, and I found that I much prefer to do that alone (sometimes it’s better if The Man doesn’t know every ingredient in his meals…).  Finding time to myself seemed even harder now that we were down to one car.  And everything is so much more spread out down here than it was up north, that unless you are a senior citizen, for whom all kinds of mass transit exists, one must have a vehicle.

On Day Three of my Nasty Illness, The Man called to tell me he had bought a truck.  He got a good deal, and a good truck, and I am happy that he did his homework.

I’m also thrilled to have my very own vehicle back.

Jobs and Autism

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I posted a story on the Simple. I Just Do facebook page yesterday about a carwash in Florida that was developed to run entirely with autistic employees, (and was started by a family with an autistic son, no less).  And I encountered a staggering statistic – an unemployment rate of 90% for those with autism.

Food Barn pin from first paycheck job. / c. 1989 - Nate Hofer

Food Barn Pin – Nate Hofer

That is a very scary number.

The article by Doreen Hemlock of the Broward County Sun-Sentinel quoted Michael Alessandri, director of the University of Miami-Nova Southeastern University Center for Autism and Related Diseases, as saying, “Most people with autism can work. They can be very successful when given the right support. There just aren’t enough job opportunities with the right support system.”

The Man and I have discussed starting our own business a great deal.  Part of that, I think a large part of it, is that if we are the owners, we can create our own opportunities for The Boy to be employed.  And just like many, many families with autistic kids are turning to homeschooling so that they can tailor their child’s education according to his/her individualized needs, I think many, many families have or will turn to entrepreneurship for the same reason.

I love it.

I am so inspired by all of this.  The world isn’t ready for this influx of people with autism?  Well, let’s make it ready, one kid, one family, one family-owned business at a time.  Bring it.

The Look

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"Now I can buy the things I love^ Here's ...You know the saying about there being a fine line between bravery and stupidity?

Increasingly, I have been getting “the look” from people I know and work with.  The look that says the person can’t quite tell which one I am, brave or stupid.  This “idea” of giving it all up and moving south.  “Is she really gonna do it?” is what that look says.  Mostly it’s people who don’t know me too well, because the people who know me well also know it isn’t an “idea” — it’s a reality.

I can understand the look.  I can understand the thought process behind it.  But the truth is, my parents prepped me for big moments like this the entire time I was growing up.  Education, education, education was the key to independence, independence, independence.  For a long, long time, I assumed it was freedom from depending on someone else.  But it isn’t just independence from other people.  It’s also independence as my own person.  Independence from a job, career path, lifestyle, society, thought, etc.  The ability to think for myself and know myself enough to know when to walk away.  To walk toward something simpler, easier, more satisfying.  Toward a smaller pile of money, sure, but much more happiness.  And not just for me, but for my boy, too.

And it’s not all that easy.  Some things will be infinitely harder down there.  But there will be love.  Lots of love.  And I guess I never quite stopped believing that love is enough, especially now that I know what true love feels like.

The most interesting part about “the look”?  Mixed in with all of the incredulity, disbelief, and sizing up?

There’s more than a little jealousy in there, too.

Lock Laces: The Greatest Thing Since Sliced Bread

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The Boy is 10, soon to be 11, and he cannot tie his shoes.  We have tried over the years to show him how, but he’s just not interested.  And when he’s not interested, he’s not going to learn much.  … Continue reading →