When I grow up….

I am still deciding what I want to be when I grow up.  I never thought I would grow up to be a stay at home mom.  I never thought I’d like it.

Wrong!  I do like it!  However, I’m beginning to feel antsy.

I love music.  So, when I was a teenager,  I thought I’d be a band director.

Nope, felt more “called” to the church.  So I thought I’d be a church music director.

Nope, liked speaking more than conducting.  So I became a pastor.  Turns out that pastors work a lot more than 2 hours on Sundays.  Some weeks I did 50+ hours.  It was fine until…

Family came along,  autism entered in, and I took a leave of absence, called “Family leave.”

During family leave, I’ve pondered many times about what may come next.  Teaching in the public school?  With those politics?  No way!

How about a special needs consultant for churches and non profits?  Well… sounds fun but hard to be taken seriously when I don’t have a credential in that field.

I began teaching clarinet lessons, which I love!  I love my students!  I may even get more this summer.

I found Wildtree and love the products and the company.  That’s going well.  There’s still something missing for me, though…

So I applied for a teaching position at a local college and am still waiting to hear if I got the job or not.  It would be very part time– I’d only be out one evening each week.

After I applied and went through the “faculty assessment” I learned about a local company that goes into elementary schools and holds music classes.  At our local elementary school, the kids and leaders wrote a school song and made a cool “Growing Grads” video for the outgoing 5th graders.  They happen to be looking for people to join their team.  So, I inquired online.

I have no idea where any of this will lead.  What I do know is that…

1–I don’t want a full time job, just one that will get me out of my house and give me something to do once in a while and give me some extra pocket cash.

2– I don’t want a job that is crazy busy and filled with drama. I’ve already got enough drama and craziness here, thank you very much.

3. I have so many varied interests that it’s hard to narrow down what I’d like to do.

So, there we have it.  What are other parents out there doing?

Wipa… Wipa good!

Sorry, I couldn’t resist!  Hubby and I went to an 80’s night fundraiser, and I danced my shoes off.  So I have 80’s music on the brain.

I became a “special needs parents examiner” for examiner.com.  When I started this freelance job, I sent out an informal survey to people in the disabilities field asking them what the best kept secrets are in my area for families and people with disabilities.  One of those things I learned about was WIPA.

Crack that “wip!”  “Wipa.. into shape…. shape it up…. wipa… wipa good…”  Ooops, sorry.

WIPA stands for Work Incentives Planning and Assistance. It is a program here in the USA for adults who receive SSI, or Supplemental Security Income, because…

1. They want to work.

2. They have a disability that impedes their working.

WIPA helps them obtain meaningful employment.

But let me back up for a minute to explain why else WIPA is incredibly important.

Tell me if this makes sense:

To receive SSI, which is based on personal income,  someone has to prove that he or she can’t work and  support himself or herself due to a disability.  For example…

• a man’s autism keeps him from being able to function in the workplace.
• Therefore, he can’t make a living wage, or enough income to support himself (food, shelter, etc.)
• Since his disability keeps him from getting a viable job, he can qualify for SSI, to meet his basic needs.

But then, once he has proven that he can’t work due to his autism and begins to receive SSI income, he can indeed go to work.  Even though he has proven before that he is unable to work.

Did that make sense?

Yeah, I know.  Prove you can’t work, then once you do, find a job. It’s almost like, “April fool!” But not quite.

In my humble opinion, these laws just don’t make any sense.  As a parent of a soon-to-be adult, these laws are actually kind of scary.

So I’m glad that I found out about WIPA. Counselors with the WIPA program are trained to help navigate this territory .

Recently, I wrote an article called Working and disabled: it is possible . I explain this issue in more detail. What I found out was interesting, and it gives me hope for my boys–  if they do go on SSI someday, they can still have meaningful work.

Maybe we parents need to “crack that whip” on these laws…

Yes, I’ll get a breather: autism and employment

This past week, the school staff and new case manager asked me,  “Do you see your [15-year old] son living with you indefinitely or do you see him moving out on his own?”

My answer:  “Out, definitely.” (Are you kidding?)

Here’s a quick background: Currently we are working on the high schooler’s IEP. We have also increased his intervention with our local case management unit.  He’s on his way to adulthood, and we are preparing.

Fun times.

I love my boys, but I have got to have a breather.  At the same time, I wonder if I’ll ever truly get one. I wonder if they will be employed and have jobs that they like.  (Read more here.) I wonder if they will support themselves someday, be able to live on their own, with roommates… or, dare I say, spouses.

It just so happened that as we’ve been grappling with these questions,  I’ve also been reading a book called Thicker Than Water: Essays by Adult Siblings of People with Disabilities.  This book is joyfully, and, at times painfully, honest about the adult sibling’s role in care and advocacy.

Like many parents, I am concerned about the possibility of my  neuro-typical daughter being the boys’ main caregiver after my husband and I are gone.  There’s one of her, and two of them. This book inspired me and my husband to seriously start the process of getting a special needs trust going and explore future living arrangements for our sons. We want to provide for our sons and protect our daughter from future frustration and turmoil.

There must be  some divine intervention going on right now in this Givler family household.

All of these questions at once about independent living + reading about care after the parents are gone and sibs are legal guardians+ realizing that my trusty ink pen is from our local Special Needs Planning= God is letting me know it’s time to prepare.

It’s daunting.  It’s scary.  It kept me up a couple of nights.

So today, I happen to receive a link in my email entitled, “They’re assets at work– and they’re autistic.” Upon reading the article, I realized it was Temple Grandin’s presentation that I was privileged to attend last May. This time, however, she was joined by corporate managers who hire people with autism.

Here’s an excerpt of the article:

Workers on the autism spectrum don’t always fit in at first, but with training and a little extra consideration, they can be among the most innovative and detail-oriented employees.

That was the message Thursday from 3M, Cargill and Best Buy managers who took the stage at 3M’s “Autism and Employment” forum, which was organized by the St. Paul-based Autism Society of Minnesota.

I am very hopeful about my sons’ futures.  My sons do and will have a chance to live to their full potential, whatever that may be. Maybe they will indeed be with us “forever”, but maybe they will be independent.  Whatever the case,  I will advocate for them and cheer them on.  I will, as Grandin said in the article, “loosen the reins a little bit.” My boys will flourish.  (And perhaps my husband and I will finally take that honeymoon.)

My son’s first job!

I answered the phone.  A familiar voice said, “Guess who got hired?”  And I was so happy I could barely contain myself.  I actually refrained from saying, “I don’t know, who???”

My oldest son Josh had his first interview for a job…. and was offered a position for the summer at our nearby amusement park!

He will be on “sweeps,” which means he’ll be, well, sweeping.  He’ll start out at the kiddie ride section and move around the park as the summer progresses.

We were skeptical about the interview today.  You see, at his mock interview session last week (with the non-profit organization AHEDD), he stopped and refused to cooperate half way through the session.  (I was glad  that his mentors insisted that he think about whether he was serious about job searching, and that services would be suspended until he thought about this long and hard and committed to the process. I believe he needs more people like this in his life!) We did a mock interview this morning. He did pretty well.

He is so excited.  He’s glad he showered, brushed his teeth, clipped his nails, and wore a coat & tie today.  His self-esteem has gone up a few hundred notches.  He keeps going over the company info and has also calculated many times how much he could make in a week.  He’s planning his climb up the corporate ladder and how he’s going to get through college.

As for me, I don’t know what his future holds at the park.  I just am happy that he looked and smelled nice.  I am excited that, when the summer gets scorching hot, the pavement gets sticky, and the work gets to be tedious,  the paychecks will be the best reinforcer ever.

I’m excited about another things, too: his future supervisor told my husband that he has several employees on the autism spectrum and that they are his best employees!

Sure, the work isn’t glamorous, but the gifts and strengths of the individuals are recognized.  Their autism is seen as an asset, not a deficit.

A landmark day: my oldest kid is going to be a member of the workforce, working toward becoming a responsible, successful taxpayer.  Take that, Mr. Therapist.

Wow, I feel old. 🙂

Yes, my boys will be responsible, successful, tax payers

I say this only half jokingly.

One of my favorite cousins in the world coaches me to use the words “so they will be good tax-paying citizens” when I advocate for my boys, whether it be in IEP meetings or community settings.  They need appropriate educations so they can grow to be good tax paying citizens, darn it, not people who take money from tax payers to survive!

At first I balked at such language, but when I tried it near some people who had some political pull, I was surprised at how much it got their attention.

I was a parent panelist for a group of early interventionists a while back. When one of the young therapists asked me what my goals were for my children with autism, I said my biggest goal was for them to live to their fullest potential– with jobs, independent living, and lives that they loved.  I suppose another way to say that would be responsible, successful, tax payers?  The therapist seemed to think it was too lofty of a goal.  You wait and see, Mr. Therapist! Haven’t you heard of Temple Grandin?  Sheesh!

I read this article about a place that recognizes the gifts of adults with autism.  They educate and coach them so that they can get meaningful jobs that they love all while making a good income.I have so much hope.  I actually wrote to the head honcho of this organization and gave him three reasons why they should open a campus in my area. (Although I did used to joke with hubby that when I retired I wanted to move to Plano.  Divine intervention?  LOL.) Read all about it!

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