There is something to be said about meeting other special
needs parents.
We have a few families we are close to in the area who have
children with special needs and they are amazing. They 100% get it. They just
GET IT. They understand the cost, stress, sleepless nights, isolation, fear, and
anxiety, plus everything else that comes with parenting a child with special
needs. If you think Matt and I rock at parenting, let me introduce you to some
incredible people in our lives…there are many and they all put us to shame.
This leads me to two weeks ago when I got to meet someone
very special…my husband’s boss, Rob.
I met Rob for dinner, with Matt, too. This was after a long
and stressful afternoon with Brody at home. He was nutty that day (nutty =
throwing dirt for no reason, requesting a zillion popsicles in an hour,
constantly stripping, hiding his shoes, you know, the usual) and our babysitter was a welcome sight for sore eyes! So by
the time I met up with the guys for dinner, I was emotionally spent from the
day…but anyways….
So, Matt told me before that Rob had a daughter with special
needs. As soon as we ordered, I asked him about his daughter and wanted to know
everything about her diagnosis. My attention and my eyeballs were completely
glued to this guy, who kinda looked like Santa Claus in a business suit.
Rob’s daughter Katie is mentally disabled, and 23 years old
with an IQ of 60/mental age of 10. They have three biological daughters…two of
them are in college, and one is getting married in a few weeks (one is at
Baylor and the other is shopping around for medical schools…I immediately
thought of Destin when he said this….Destin will be our scholar I think…anywho…).
His daughter with special needs has a job, a boyfriend, and lives with them at
home, and probably always will. And he is fine with that, so is she.
They are very careful about who she “hangs out” with and she
is terrible at managing money. She goes to summer camp every year at Camp
Barnabas and loves it. She is very happy and loves living at home with her
sisters, mom and dad. She’s had a long road; high school was very tough but
they got through it together as a family. They have two adopted daughters who
are much younger and also have special needs (Down Syndrome).
Katie, unlike Brody, showed signs of her disability at
birth. She was “floppy” meaning low muscle tone and missed all of her
milestones. She did not walk until she was two and did not talk until she was four.
She also could not gain weight as a newborn and they went to hell and back
trying to figure out what was wrong. His wife was a neo-natal nurse at the time
and she could not figure it out either.
Rob gave us Katie’s complete history…he explained all of the
therapy she received, the IEP process, everything. He even talked to us about
high school and puberty and all of that stuff that frankly scares the Be-Geezus
about of me. There were moments, while he was sharing her story, where I could
feel that lump in my throat like I was going to break down in my fajitas and
start “ugly crying” in the restaurant.
You could feel the love he has for his precious daughter and
how hard he had to fight to get her the help she needed. I have no idea how he
managed to be so successful in his position, climbing up the corporate ladder
so his wife could quit working, and manage to be such an amazing daddy to his
girls.
If I were to walk you through every question I asked this
man, while my husband sat back taking in my motor mouth, this blog post would
be sixty pages long. So, I will spare you the specifics. He gave us some great
suggestions for support groups, summer camps, IEP responses, and advice about
raising children with special needs. But he went even deeper than
parent-teacher conferences and information about speech therapists…he got into
who Matt and I are as parents….
Brody is only seven years old and his daughter is 24. And
you know what? Rob and his wife Donna? They are OK. He kept saying this over
and over again….
“You know, Cassie, Brody is going to be ok…” he said, in
between my relentless questions. I think he could tell I was tearing up over
and over again during our conversation.
“But the real question here, Cassie, is…are you going to be
ok?” He asked. And this coming from Santa Claus, is a hard question to answer.
“Oh yeah I’ll be fine.…” I said, drinking my 8th
cup of lemonade, wishing it had vodka in it.
“You matter. You are putting up with some serious shit that
most people would be unable to cope with. You both are and you’re doing a great
job. I mean think about what you do every.single.day. Not many parents could
handle what you Matt handle day in and day out.”
He went on… “Brody
will do amazing things; he has an amazing future ahead. Because he has you
both.”
By the end of the four hour conversation, I was hugging Rob
goodnight. He kept saying the same phrase over and over as we parted ways…
“It’s going to be OK.”
The conversation with Rob didn’t cure Brody and it didn’t
change the fact that when we got home, Brody up to his shenanigans again. It’s
didn’t make Brody speak or change his stimming patterns. But it did put me at
ease, and Matt, too. We met with someone who had been to hell and back, and
came out on the other side to tell parents how to survive it.
It seems like every day we read about a parent of a special
needs child killing their child or themselves because they cannot take it. They
do not see any other way out, so they choose to do the unthinkable. Perhaps the
cure for this abuse is education or even something simple like a support group.
If this new baby cooperates, our first support group meeting
with MO-FEAT is June 26…wish us luck.
