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.
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. ;)
I kid. Maybe. ;)
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
ReplyDeleteHey 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. ;)
DeleteThanks for this...I think of you often. Love you and your boys back!! DI xoxox
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.
ReplyDeleteSo 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!
ReplyDelete