Tuesday 24 January 2017

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.  ;) 


4 comments:

  1. Hi Di! Just wanted to give you a huge fist bump and an ever bigger hug. You know we're right here in this same place too. It's haaaaaard. It's scary. I think it's important to talk about how hard and scary it is. And it's exhausting! After all these years of fighting for the things our kids need, you kinda hope the fight will be over or at least less... but it goes on... I think adulthood is proving much harder than childhood because there are SO many less supports available. And the expectations and demands are higher. Anyway I love you and am always here for you in whatever way might be helpful from this far away xxxx

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    1. Hey Bec! (((((HUGS))))) Yup. I know. *sigh* Thought it might get ever-so-slightly easier. I was wrong. I can only hope it will get easier for those coming behind us. I guess on the upside...I'm not sleep-deprived any more. ;)

      Thanks for this...I think of you often. Love you and your boys back!! DI xoxox

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  2. We have so failed those in society who need us most. Like it's really not something to be proud of at all. To think that any parent should live in a community/world where such worries exist is a sign that we do not have our priorities straight. So I think you have every right to feel discouraged. There are helpers out there, I know -- but not enough for the many who need it.

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  3. So glad to have found your blog! Same song, different verse. I hope parents of younger children will pay attention to the problem sooner rather than later!

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