Life is not fair. We all know that. It wasn’t meant to be.
If it were, there would be no underdogs or inspiring stories of triumph. If life
were fair, there would be no poor, no rich, no brilliant, no challenged – it would
just all be the same. But can we just stop for a moment and acknowledge something?
There is a difference between “life isn’t fair” and being overloaded with
unfairness - or as most of us call it "Life".
I was talking with an acquaintance the other day in the
grocery store (which I believe is people’s favorite place to talk to me at), she
was telling me about her child’s plans for life after graduating for college
this spring. I told her how very proud I was of his accomplishments and plan
for the next stages in his life. What happened next though sent me into a bit
of a tailspin that I’ve been stuck on ever since. She asked me, “What’s next
for Parker?”. I said that Parker has 1 more year of school left as he can stay
up til his 22nd birthday – after that, we are unsure. I have ideas,
I have hopes, I know what *I* want but all of it will take a community coming
together, all of the cards falling in the right places, and – as always – a lot
of work on my end. She said, “Maybe you should just open a bakery so he can
work for you!” I smiled and softly said, “Well, he would hate it for starters.”
She laughed and said, “Well, life isn’t always fair, sometimes we have to do
things we don’t like.”
And, well, that was where we went from friends to acquaintances
because she poked an open wound so hard that I snapped back, just a bit.
“You’re right. Life isn’t always fair and sometimes we have
to do things we don’t want to. But let me ask you this – if your son could not
find a job, would you drop everything, find the financing, and start a business
he didn’t like just so he could work?”
She just stared.
She just stared.
“No. You wouldn’t. Not only would you not do this but no one
would expect you to. Yet, everyone has this expectation of special needs
parents. Do you really want to talk about life not always being fair? Because
this is going to take a while.”
She smiled, patted my arm and left. Bonus points to me for not tripping her as she walked away.
She smiled, patted my arm and left. Bonus points to me for not tripping her as she walked away.
She’s not the first to say this to me – the part about
starting a business so Parker has valid employment. I hear it frequently. And,
like I am sure she was, it is well-intended and not the worst of all ideas. I consider it frequently as I try to work out in my mind what that would be and
how it would work given my son truly shines most when he is given the opportunity
to be independent in the company of others.
I love my children more than life. I would do anything for
them. I want them to be happy contributing members of society. I want them to
make a positive difference in our world. So, pretty much, I’m like every other
parent.
Except, I still tuck my 20-year-old son into bed every
night (at least 3 times). I help him with self-care (bathing, shaving, wiping, nail clipping). I
help him get ready for school each morning. I give him his meds 3 times a day. I take pride in the leaps he’s made (being
able to get his hair cut, not letting nail trims become battlefields, getting
dressed on his own). I still cut most of his food. I can’t always understand
what he says. I get yelled at almost daily out of his frustration. (ß also a huge leap, he
used to be incredibly aggressive to me and physically attack me – I’ll take
yelling and the occasional swear word any day over that.) I miss meetings,
events, nights out, and family functions when his days are not his best, or
when he is too overwhelmed or on good days when I know my leaving would throw
that into a tailspin. I continue to advocate for his rights at school (which I’ve
been doing for over 17 years now – and amazingly it is still often a battle). I
advocate for his rights in the community and in our world – because not
everyone feels he belongs here or that is life is of value (for the record, those people are assholes).
I plan. Every single special needs parent plans as though
their life depends on it – because it feels like it does. Not just today or
tomorrow or this week or month but for years into the future. I cry frequently
and have panic attacks over what will happen to him when I die.
I’ve been working on Parker’s long term housing plan for
more years than I can remember, finally pushing that dream forward over the
past year. There are still so many details to iron out. You know who gets to do
that? Me. Or this won’t happen.
This is our life. And most days, I love it. But many days it
also is incredibly overwhelming – especially when I think about the future.
There is NOT a lot of work for my son. There are not a lot
of places willing to “hire” him, even if it is just volunteering and a “job” in
name alone. And I’m not alone. Parents of special needs children all across the US are doing exactly what that acquaintance of mine suggested and starting
businesses so that their child can be employed and of value to their community.
This is amazing and wonderful and awesome. And so fucking
unfair. No one else has to do this. No one with a typical child, even if they
are lazy, has to start a business (most often a non-profit) in order for their
child (and their friends) to be able to work.
Would I like to start a business? I don’t know. I have no
idea what it would be that would engage Parker. I don’t know of any jobs that specialize in watching sports, COPS or Paw Patrol. I don’t know of
any jobs where the top qualification is seeing how much you can get your mom
to do for you – a skill he highly excels at. And, there is that little fun
fact that he needs a world outside of me. He is with me 7 days a week.
Yes, he goes to his dads during the week but on the day he goes, I get him up
and ready and the next day when he comes back – he’s coming back to me. I see
him every single day (not at all a complaint – I only let him leave because I
have to). I would be ridiculously arrogant and wrong to say he doesn’t get sick
of me… because he does.
He has a job in the community through school right now and
he LOVES it. He walked in not knowing anyone and has a new family who he
adores now thanks to this opportunity. He needs, wants, and deserves this. He
truly does and I would do anything to keep him there forever – because he knows
he is safe, valued, and has purpose.
I’m not alone in the thought running through the back of my
head though about dropping any plans I have to ever retire and start a business
so that my son has employment. In a 5 minute (probably less than 5 because I
was also playing with the cat and the laser light) I found these business that
parents started to that their child could have employment.
https://www.southernliving.com/news/special-kneads-treats-georgia-bakery-jobs
( ß I know the mom who
started this and adore her!!! I also love being able to say I know her because she
is an absolute inspiration!)
I can’t say it won’t happen. I can’t say I won’t ever start
a business so that my son has employment because the reality is, I don’t know
that I won’t. I know right now it is not an “I will”. Right now it is a “for
the life of me I cannot see how I could ever make that work and not potentially
lose everything.” Especially since my passions and Parker’s do not align. And
because it goes against everything I am trying to do to make him independent without
me. Seriously, it’s a ridiculous damned if you do, damned if you don’t type of
thing.
There are just as many parents starting housing communities
and adult programs so that their adult child has a safe place to live – like
these incredible people I know …
And that’s just 4 people I know (and I know I’m leaving
people out – it is not at all intentional!) I didn't even google for more).
We think about this every day. We lay awake at night trying
to figure out how to make the best life possible for our kids and then how to
make that truly happen.
If you ask any of the parents above WHY they are doing this, it isn't because it was a life long dream. It was because if they didn't, no one else would.
I have to admit (I’ve been saying this a lot lately) I’m
tired. I’m tired of all of the fighting (I mean, advocating), I’m tired
of planning, I’m tired of answering every demand throughout the day, I’m tired
of trying to make what is next work by jumping through every hoop known to man.
I get it, life isn’t fair -but could we give the special
needs parents a bit of a hand? They could really use a break. Why don’t YOU
start a business to employ our adult loved ones? Why don’t YOU create housing opportunities
and programs for them? Why don’t YOU quit your job, forego retirement, cash in
your 504 and give our adult children a better quality of life in the community?
Because right now, it is solely up to us on top of everything else we are
attempting to do in our very unique but demanding lives...and we are tired.
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