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that impulsivity, that lack of thinking about consequences,
yeah, that could put people in compromising situations that could lead to...
Like Jean was talking about,
skipping a snow machine across a pond.
You know, people die every year in Alaska in the wintertime
taking their snow machines out in places where they shouldn't be.
Same thing with being out in boats,
and other things that people do where they're not, you know, being safe.
They weren't in their right mind, you know, that was the idea.
Anyway, let's see what else we've got here.
Ah, Mike came in at just the right time.
Mike Baldwin joined us in the back and a long time ago we talked a lot about this.
About grief. And how that impacts families.
And I've sat in a couple of his presentations about it,
so I feel a little weird being the one up here talking about grief.
But, these are kind of the high points for me,
for the families that I work with.
These are the things that I see come up over and over again.
Some families that I've worked with for years never seemed to be able to get past
the sadness, and the disappointment, and the lost dream that came with getting a diagnosis.
They're just stunned by it.
It's like they've been poleaxed.
They cannot move forward.
And I get the same call every time their kid transitions into a new system:
nobody understands;
we're not going to be able to survive this;
he's going to kill himself;
or somebody's going to kill him.
And it's like it has never gotten better.
They've been offered a lot of supports,
but they just aren't ready to take them.
And it's really hard to know how to work with those families,
because you feel like, you know it is one of those times when
you have to, kind of, pull yourself up by your own bootstraps,
or it isn't going to get better for your child, unless you, as a parent, step up,
and start making changes happen.
Because the kid isn't going to be able to get out there and advocate for themself,
at least not without somebody to model that kind of advocacy for them.
The cyclic stuff.
Every time there is a new diagnosis,
or every time there's a transition point,
and it comes right back in your face about your kid isn't going to qualify for this, or
yeah, they used to be able to do that but now
it is a competitive team and isn't all comers.
It's only the people that are really good that are going to be able to be on it,
and your kid's not going to make the cut.
How are you going to tell your child that hockey they've been able to do
throughout their elementary and middle school years they can't do anymore because
they can't compete with the big guys.
They're, they've been okay to play as part of the all come kind of team but,
not when the high school is trying to win a trophy.
Suddenly it's not about let's get out here and have fun.
It's about a competition and being the best.
So those kind of things come up.
In the teen years we start to see our kids kind of going through these cycles of
I'm okay, I'm doing a great job today.
And the next day somebody says something to them
and they just feel like they could die.
And, unfortunately, remember lack of consequences,
that impulsivity, they don't think about it.
We do have kids that try to commit suicide
because they are really unhappy,
and they feel like they're never going to feel not unhappy,
and that nobody likes them,
and it's never going to be any better.
They do things that they can't take back.
I probably get two, three calls a year like that.
And those are the worst.
There's no taking it back, you know?
The unexpected ones are the ones that get me, though.
And I did bring my kleenex because whenever I get to this part I usually cry.
For us it was at the time of diagnosis,
you know, we thought we knew, when we adopted Justin,
what package we had: We knew he had cerebral palsy,
We knew he had Fetal Alcohol Syndrome,
even though, until he was 3 1/2,
we wouldn't let anybody write in on the paperwork,
because it hadn't been confirmed by a specialist.
And we were afraid at that time that,
because we hadn't planned to adopt him at that time,
nobody would want to adopt him,
if they knew he had fetal alcohol syndrome.
That was 22 years ago, well 19 when he was 3,
People still saw it as kind of a dead end diagnosis.
Those kids got put in the back of the classroom,
there wasn't anything you could do for them.
They weren't teachable.
You saved your energy for the kids that could learn,
and were going to make something of themselves.
I didn't want that to happen to him.
I had no clue what FASD was really about.
I had no clue about hard returning was going to be at that point.
But every time we would get a new diagnosis it was like, okay, enough.
And you know, we know he's got CPA, we know he's developmentally disabled,
and he's probably never going to catch up,
but we figured he'd keep catching, you know,
kind of keep along with everybody else.
And then we started seeing they're going like this,
and he started doing this.
And so 10 years ago I was telling people,
he's about like a 6-year old.
10 years later I'm still saying he's about like a 6-year old.
And that's my reality.
You know that I've got a 22-year old 6-year old.
And I'm probably going to have a 35-year old, maybe 7-year old?
If I'm lucky.
The saddest thing is when my husband realized this when Justin was 18.
And just one night he said, "We're never going to be done parenting, are we?"
We're never getting out of this.
Because our dream had been get the kids out of the house.
You know, when we adopted Justin we figured,
well when he turns 18 supported living place.
He'll be a lot better by then.
You know, we'll get all the right people; we'll get all the right treatment,
we'll love him, he'll get better.
And it didn't happen.
And here we are.
And we're really lucky he's the great guy he is.
He's so mellow.
But it's never going to end.
We're going to be his parents until we die.
And, yeah, parents are, but we're going to be like actively parenting,
and seeing him every day,
because I don't think I'd him out of my sight,
somewhere where he may be unsafe.
So, it's the three musketeers at this point.
There's a lot of families that, sometime in those late teens, those early 20's
they realize that, that's their reality too.
And it's going to be like that.
And that, that's a big pile of grief to carry around.
We do good when we talk with other parents.
That's probably the best place for us to talk about it.
And we always have lots of kleenex.
We've found the dads don't talk about it the same way.
Every year we have this camp for families that
have kids with fetal alcohol spectrum disorders.
Volunteers of America is funded through the Division of Behavioral Health to do this camp.
And we do it in either January or February, over one of the long holiday weekends.
And there's staff that have all been trained to work with kids that have FASD.
Very low ratio, like 2-3 kids per staff person.
The parents have respite probably 6 hours a day.
We do workshops.
They can get massage.
They can stay in their room and sleep, or read.
And they know that their kids are safe.
And it's in a completely accepting and non judgmental environment.
It's like, the best thing in the world.
It's all my son talks about, for like, 6 months ahead of time.
We're in the middle of that phase right now.
I keep saying but what about Christmas? Christmas is coming first.
Oh, yeah. Christmas tree. Presents.
And he talks about getting his presents all stacked up.
He likes them in a big tower.
And his Christmas tree with blue lights.
One, two, three, go to camp, see Renee, tell stories, play the piano.
He's just right back there. Talk about cyclical.
That what they call perseveration.
That is probably, of all the characteristics that Justin has,
the one that is most challenging.
And I, you know, when I look at the families I work with, I really can't complain.
Even though there are times that I just want to run out of the room screaming.