Transitioning to Adulthood...NOT for the Faint-Hearted

Life in Riley World can be a hard thing to explain to others. Last week I was out for dinner and a movie with some girlfriends. I was bemoaning how stressed out I’d been feeling lately.

Today a friend forwarded me this article from our local newspaper. “It’s way too hard for families.”: Parents of disabled children fight for support.

The timing of this article was well...timely. 

When Riley was still in school, I kept hearing the stories. “There’s NOTHING out there!”  “There are NO PROGRAMS!!”  “THERE ARE NO SERVICES!!!”

Surely “they” were wrong. There had to be something!  Nobody wants to believe "there is nothing out there".  I sure didn't. 

Parents of younger special needs children can often be heard saying “I can never die.” The worry of who will care for their children; who will advocate for their children; and where their children will end up can be daunting for parents.  

As special needs parents age, thoughts can turn to “I hope I can live just one day longer than my child.”

Unthinkable, right?? 

Sadly, if you have an adult-child who will more than likely require support for the rest of their lives…whether admitted or not, the thought crosses your mind.    

Riley will be turning 23 this June. Since he turned 19 we have been one of the families in this story. Applying for services/funding. Turned down. Advocating. Creating a new program with other families. Re-applying for services/funding. Turned down again. Tired. SO tired. A vicious and exhausting circle.

For the first time since Riley transitioned to “adulthood”, I am feeling beyond discouraged and frustrated. I am disheartened. It’s not a good place. It’s not productive. It’s not healthy.  

Not to worry. I have an appointment with my GP about upping my “happy” pills. When in doubt…up the meds.  
I kid.  Maybe.  ;) 

Let's Be Honest...Transitioning to Adulthood is Scary

A year ago I wrote a post Phase 2: Adulthood…“In Progress” and was excited to start sharing with you some of the plans we had brewing for Riley World: Adulthood.

And then…

I got all overwhelmed and did the old rocking in the corner, breathing into a paper bag thing.

That was a year ago.

Now before I lose any more of you, at least watch this video clip of R's fitness class (part of his new program). Guaranteed to make you smile! 

or Click here to watch the video.

Feel better??  Good.  

*Pats seat*  Come sit by me. I’ll even share my wine with you.

If you have a teen or are fast approaching the teen years, you are probably getting asked those “I-don’t-want-to-think-about-it” questions while plugging your ears and humming incoherently to yourself.

What happens when your son/daughter finishes high school and may not be ready or want to go on to a post-secondary institute? 

What happens if your son/daughter may not be ready for a paying job?

Am I right???  

*Grabs wine bottle*  Here…let me fill your glass up again.

I remember hearing “There is NOTHING out there!”

I remember thinking surely these people were exaggerating. There had to be something out there. Right?  RIGHT??

Well…there are programs out there. Only…the sad truth is there are not enough programs out there. And…what is available may or may not be appropriate, suitable or a good fit for your son/daughter.

So then what?!??!  

*Opens new bottle*  More wine???

Quick recap for you…

Four years ago this September Riley World started school for the last time.

Three years ago we took a much needed “Gap” year.  

Two years ago at a Transition Committee meeting I attended, another parent found a program on the Island that sounded like a good fit for Riley. The program is a family governance model called InclusionWorks! It is an individualized, age appro­pri­ate, community-based pro­gram started by a group of parents for their young adults with developmental disabilities.

In September 2015, after over a year of planning, organizing and an enormous liquor bill…we (a group of parents) formed an InclusionWorks! “grouping or pod” in our community.  

We all had the same goals in mind for our young adults…

Being a part of their community

Getting to know people in their community

Becoming involved in their community.

We started our 2nd semester in January. It’s been stressful and exhausting to say the least. But to see our young adults getting out there in their community in a meaningful way……keeps us motivated and the liquor stores in business.  

Coming soon...programming and the partnerships we have formed. 

The "Circle of Riley World"

In June 2013, Riley finished high school. For the 5+ years prior to that we were cowering in the corner in the fetal position looking ahead to the next phase in Riley World. Adulthood.

In some ways it feels like we had come full circle. We were back to the beginning. Paperwork to be filled out. New procedures to be learned. Schedules to be planned.

I guess on the upside for us…no diapers and fewer meltdowns sooo…I guess there’s that.

But the nagging questions were still there.  “What is Riley going to do now that he’s finished school?”  “Will he get a job?”  “Have you thought about where he will live?”  Hyperventilating commencing in 3…2…1…

Then there’s the “There’s NOTHING out there!”  “There are NO PROGRAMS!!”  “THERE ARE NO SERVICES!!!”  *Passes out*

So what do you…as a parent of a young adult who can not ride the bus on his own or even stay home alone for that matter, do? How do you create a meaningful life where your adult-child is involved in their community and feels accepted?

You do what you have done for the past 16 years (if you count 2 years of preschool and the “extra” year of high school). You take a gap year and regroup. And then…you put on your grandma panties, take a deep breath and look for something that will work for your “kid”.

It’s not easy…but as parents…we will find a way. Am I right???  Please tell me I'm right otherwise I'm going to crack.  

Next post:  What are the options??

Closure for the Sock Saga...

On the heels of Riley destroying throwing away his black striped socks for reasons I will never know…here is an update that, if you follow us on Facebook, you will already know about. Otherwise ummm…why aren’t you following us Facebook?!?!?

At R's request he went to buy some socks at Walmart with his cousin Sara after work experience. He came home with 2 packs of socks. Socks that he has never, EVER had before. He picked them out, paid for them and seemed quite excited about it all.

Conversation he had later with G over Mr. Noodles:

G: So I hear you bought some new socks today.
R: Yeah I did!
G: Where did you buy them?
R: At Walmart with my cousin Sara.
G: How many did you buy?
R: 2 packs.
G: How much did they cost?
R: *Without hesitation and very confidently*   2 dollars! 

Ummmmm....not exactly. One of the downsides of always using a debit card?!?!?

Keeping my fingers crossed that he will wear them. 

UPDATE:  He has been wearing the NEW socks happily every day since. Then again...there are no other socks in his dresser drawer.  :D

Looking for a Job...Ready OR .....Not?!?!?

After 15+ years in Riley World, we have come to grips with the reality that Riley will always need some type of support.

One of the questions we are often asked is whether or not we think R will ever be able to get a job. A paying job. I would like to think at some point…yes. What that would look like is a whole other thing.

Yesterday I needed some help putting 2200 tickets together in batches of 50. In my mind…this was a job for Riley-man!! He is a whiz when it comes to numbers and putting things in order. The only hurdle would be to convince him. 

The conversation went like this:

Me:       Riley…I need your help today.

R:         *giving me the side eye*

Me:       I need you to help me put some tickets in order.

R:         I’ll be whining!

Me:       Well…you can either go out on an adventure with dad or stay home and help me.

R:         *thinking*

Me:       ………

R:         Stay home and help you.

Before you think “oh how sweet…he wants to stay and help you”…no. No. That’s not it at all. Riley will do/say just about anything in order to stay home. This was followed with:

R:         I’LL BE WHINING!!

Me:       If you stay home…no whining otherwise you have to go out.

R:         *speaking quietly*  Just stay home.

A little later at R’s request…the McD’s card was thrown in as an incentive. ‘Doing a good job and no whining’ were the terms of G picking up a medium fries in a small brown bag on his way home.

I set up the tickets, demonstrated what needed to be done and after a few adjustments Riley was on his way. He managed to work for 45 minutes putting together 25 packets of 50 tickets. The only challenge “I” had was R scripting almost the entire time. 45 looooong minutes. Here. Watch and see:

In this next clip you will see where R dropped a couple of tickets and checked the numbers before placing them back on the pile (55 second mark) and how he stopped on his own when he hit 400. Yes I was impressed. :D

After 45 minutes I had had enough I let Riley off the hook. You watched and heard the video right???  

Less than 2 months shy of turning 21, Riley is not ready for all the responsibilities and independence required in getting and keeping a paid job. For now…that’s okay. We will keep working towards this goal through volunteering and work experience. 

Phase 2: Adulthood....."In Progress"

We hear stories about autism when they are “out-of-the-ordinary”. The likes of Dr. Temple Grandin, Ron Suskind “Reaching my autistic son through Disney” or autistic artist Stephen Wiltshire who is able to draw cityscapes following short helicopter rides over cities. But…

What if your child is somewhere in the “middle” of the spectrum?

What if your child may need some type of support for the rest of their life?

What if your child is not “out-of-the-ordinary”?

OR

What if your child will NOT be going on to a post secondary school?
What if your child is NOT ready for paid employment?

OR

What if your child is eligible for funding but there are no monies available?

What if your child is eligible for services but there are no services available?

What then???

What happens in the next 5-10 years when the wave of 1 in 68 (in the US) diagnosed ASD kids are finishing high school and entering adulthood?  Scary isn’t it.

If you are a parent of a younger child; if you are anything like I was…you are probably running off screaming incoherently in the opposite direction. If you are still reading…WOW!! Please leave a comment as to what type of medication you are on so I can get some too  ;) OR if it helps…you can read all about my angst when Riley finished school FOREVER, why we decided to take a “Gap” year and what turning 19 looked like in Riley World.

With our “Gap” year behind us, we are ready to move ahead with this adulthood thing. I am excited to start sharing with you some of our plans for "Riley World: Adulthood" in the coming weeks/months. As my friend Liane Kupferberg Carter wrote in her article “Loosening the Ties that Bind: Growing Up with Autism”:

“But we must. And we will figure out what comes next. We will do this just as we have done everything else these past twenty years. Pulling together as a family.”

~Liane Kupferberg Carter

Yes we will. And as a community we need to start planning for the 1 in 68 diagnosed ASD kids who are coming behind us. We need to start thinking outside the box.

Image Credit

I hope you'll come back and follow the next phase of Riley World. 

Celebrating "PUPPY"

For the past 19 years Riley has had a constant companion in a floppy, once-stuffed dog named “puppy”. A gift from his Auntie Trudy for R’s first Christmas which became “THAT Special Toy”.

In the early years puppy went pretty much everywhere with Riley. 


On special occasions puppy even got to snack with Riley. 

Camping and other family vacations would not be complete without puppy.

As Riley got older and went off to school puppy got used to staying at home. Riley would place him gently on the stairs, snuggle his face into his body and breathe in puppy’s scent before heading out the door.

After 10+ years of hard loving, puppy started to break down. It was the Christmas of 2006. I was now a seasoned autism mom. I knew exactly what made Riley tick. Yup yup yup. I knew. All I had to do was replace “THAT Special Toy”.

Look how excited Riley is!!!

For the next 7 years (less 1 day) puppy took up residence (for the most part) on Riley’s shoulder.

At the beginning of November 2013, I discovered what turned out to be stuffing in Riley’s bedroom. After some investigation I realized Riley had tried to ‘destuff’ the replacement puppy. A surgeon Riley will never be. Did Riley sense the demise of puppy??? 

Puppy’s tattered and dilapidated body had become a tangled mess. Riley would shake, twist and untwist its threadbare body to no avail. Then on Christmas Eve day of this year (2013), G discovered the remnants of puppy in our bathroom garbage. *GASP* 

I am almost certain Riley tried to detangle puppy with his trusty scissors. 

A little snip here led to another snip there……  

The next morning......

It was as if Riley was trying to piece puppy together.  :(  

R:    You can fix it???

Me:  Ummm. No. I’m sorry. I can’t fix puppy.

R:    *Picking at the pieces*   You can’t fix puppy. (in his sad voice)

Me:  No. I can’t. It’s too wrecked. 

R:    It’s too wrecked. I wrecked it.

Me.  Yes. You cut puppy into too many pieces. I’m sorry Riley.

As the day passed, Riley would pass by the pieces, pick them up, smell them and sadly walk away. Why did I not just throw them away??? Well as you know I am a seasoned autism mom and one of the top 10 rules of autism is never, EVER throw anything away unless you have stored it for at least 10 years. EVER!!!  

We finally decided that Riley would give the replacement puppy a try. I would put my grade 8 sewing skills to the test and try and patch up new puppy.

VOILA!!!

Part of me thought perhaps this would have been a good time to naturally transition away from puppy. Yet another part of me had a hard time letting go. Puppy had brought so much comfort and security to Riley. Whether it was in his backpack under the seat in front of him on a plane or in a hotel room waiting for him to return from a day's outing; puppy was the one constant that gave Riley a sense of calm and order. Had we not had new puppy waiting in the wings, the choice would have been simpler. Not easier. Simpler. We would have no choice but to move on.

Was I doing the right thing?? Maybe at 19 Riley should not have a “puppy” or “blankie”. Any doubts I had were put to rest when we were at my sister’s for Christmas dinner this year. There on the arm of the couch was a well worn part of a quilt. It was my niece’s. It was her “blankie”. She is 20. J2 still has his “blankie” on his bed. He will be 21 in less than 2 weeks. For now Riley seems to have taken to new puppy…only time will tell.

Did you or does your child(ren) have something they are/were attached to??  How did you/they let go? 

   

Aging Out...

Image: freedigitalphotos.net   

What is Riley going to do now?

Have you thought about what Riley will do in the future?

Do you think Riley will ever be able to live on his own?

All valid questions.

Questions that I have thought about all too often yet have pushed to the back of my mind because it caused me to hyperventilate in years past. OK. I still hyperventilate.

Only now…we are there.  Or here.  Right now. *grabs brown paper bag*

Riley finished high school and turned 19 at the end of June. After 14+ years of ups and downs; forwards and backwards; challenges and successes in Riley World; we were all done. So we decided to take the summer off. A hiatus…sabbatical…if you will.

Then September came.

It has now been 3 weeks since what would have been the start of school for Riley. We are in the process of getting services/funding organized but this all takes time. In the meantime I decided we would work on his diet, some life skills at home, continue some type of work experience 2-3 times/week as well as community outings 4-5 times/week. It has been a change in our daily routine. A significant change. He is home full time and for safety reasons he can not be left at home alone. 

Something Different.  Not unusual in Riley World. We have been doing something different for over 14 years. Yet something WAS very different and I could not seem to put my finger on it.

Image Credit:  freedigitalphotos.net 

I am old. There. I said it.

OK so not old old. Just old enough that I am well…just tired. Not tired as in not enough sleep kind of tired like when he was little OR tired/exhausted from the emotional and physical roller coaster during the early years of Riley World. Just tired of doing stuff.

Last week I was sitting in a Transition Committee meeting with area school district personnel, representatives from community societies/government agencies and parent advocates. After the meeting was over I sat talking with a few of them. We decided that Riley and I are taking a “Gap Year” of sorts. Heck. Lots of kids took a gap year after high school. Right??

Yes. Yes…I liked it! I felt as if a load had been lifted. I felt refreshed. Ahhhhh...  

So for the next year I will be blogging about Our Adventures with Riley: The “Gap Year”!  Should be interesting to say the least.   :)