This is not one of those “count your blessings” blog posts,
so please keep reading! This is an honest take on new experiences in our autism
journey with Brody. This is kinda long, but it was quite a night.
Our family is so diverse. We have Destin, our brainy child;
he is obsessed with math, dinosaurs, NASCAR and soaks up new information like a
sponge. Then we have Sam, the new baby. Sam will be our comic relief, Mr.
Personality and is so far a silly, chubby, goofy mess!
Then there is Brody. Brody’s had a couple of really hard
weeks and we can’t figure out why. He can’t get into a routine no matter how
hard we try. One night he’ll want to eat dinner early, the next night late. If
he can’t go outside he is a holy terror; he’ll throw things and dump out drinks
in the sink. He’s sleeping is all over the place. He’s also been really vocal
and screams if he doesn’t get his way immediately. It’s a tug of war in the
mornings to get him ready for school. Some days, like today, he is just fine…but
unpredictable. Some days he is inconsolable and I feel like a failure as his
mom.
The St. Louis Arc is an organization here in the city
designed to offer support to families with special needs adults and kids.
Translation: it is a GODSEND. They have classes for moms, dads, special needs
adults…they offer caregiving services and social events for everyone in the
family. Destin started attending a special needs support group this week and he
really loved it. It’s a bunch of little boys ages 7-12 who have brothers or
sisters with special needs. I’ll come back to that in a bit…
On Wednesday night I took Destin to his first support group meeting.
And while he was in his support group, I jumped into an impromptu parent
workshop titled, “What Happens to Your Special Needs Child When You Die.”
Yeah…just for fun, right? Just what I needed. (sarcasm here…)
It wasn’t exactly the
uplifting evening I was hoping for, but it was either attend this meeting or
drive 30 minutes back to Chesterfield and then drive 30 minutes again to
Maryland Heights to get Destin. So I stayed for the “workshop.”
So, I sat at the back of the room and watched families file
in the conference center. I was by far the youngest person there. But it’s
never too late to plan for this stuff, right? I won’t get into the workshop
itself too much. Besides, the most interesting part was not the workshop
content. The most important part for me were the families in the room. I sat
and just observed.
The woman, we’ll call her Lisa, who sat to the right of me
had a daughter who was 26 years old with an IQ of about 60. Her daughter has a
job at a local thrift store. She attends the dances and classes offered through
the St.Louis Arc. Lisa is a single mom; she got divorced when her daughter was
6. So, she has been doing this on her own for 20 years. She has no other
children. It was just Lisa taking her to school, attending her IEPs, helping
her settle in at night, and walking her through those hard high school years. She
did this all by herself without help from any family.
There was another woman who say to my left, we’ll call her
Jan, who had a 16 year old daughter with Down Syndrome. She is also a single
mom; she sat next to me eating a twinkie; that was her “dinner.” She had no
time after work to cook a meal or stop for something better, she said. Jan
brought her daughter with her and she stayed in the waiting room that was right
off the conference center. Her daughter sat and listened to Sesame Street music
videos while the workshop went on that night. The daughter was about 5 feet 2
inches tall and weighed about 200 pounds or so. She sang for a few of the
videos, too.
As I looked around the room that night I saw more and more
families…but didn’t hear their stories. There was an older couple that sat a
few rows ahead of me. They brought their 20 something son with them. He sat the
entire time; he stared at the lights. There was another mother, about 70 years
old, with her 50 something special needs son. He had a hard time sitting still
and needed to move to another room.
Lastly, the woman hosting the workshop told us her story.
She has a son who is deaf, blind, and autistic. He also has several medical
problems and wasn’t supposed to live past age 20; now he is 55. The woman was
almost 80 years old and looked amazing.
So, while I did get a lot out of the content, I definitely
got more out of watching the families in the room.
I kept wondering, of course, “Will this be me in 20 years,
with my Brody?” I realize a lot could happen in that time; he could progress a
ton. But still images of an older Brody crept into my head as I sat there. I
was actually really proud of myself for not crying, as I typically do, when I’m
around special needs adults. And it’s days like these that make me so thankful
for my supportive husband, my Destin and my sweet baby Sammy. No matter what
happens with Brody, I have all my boys.
The time came to pick up Mr. Destin from his support group.
As I walked to his classroom, I could hear little boy giggles and goof off
noises (pure music to my ears!). They weren’t quite finished yet, so I started
a conversation with another mom waiting by the door; she was wearing a Cub
Scout t-shirt, so I asked her about her guy…since Destin is a Webelo and all.
The mom, we’ll call her Linda, explained she has a 7 year
old son in the support group. I told her about my Destin and his silliness…she
told me about her son’s cub scouts. I assumed since he was in a support group
that she had another child with autism. So, I asked about him or her.
“I have a 2 year old girl. She was born without half of her
brain,” she said.
And then, to my heartbreak, she started crying in the
hallway.
I held her hand and told her how proud she must be of her
son; he is a great big brother. I felt as though I was saying all of the wrong
things as she went on about how she finally “had her baby girl and now she is
like…this.” She explained all of the things they do at home for her, and how she
felt they had no family time. I tried to encourage her that with Brody, who is
nonverbal, you do find a way. I tried to tell her that it gets better and it
does work out. It’s a process. It’s a journey. I told her all of my special needs
mom advice (it’s ok to be pissed off, ignore your messy house, it’s ok to do
things for yourself, your little girl knows you love her, you’re doing all the
right things for her and your son, etc.); everything I could think of….the
tears finally stopped once we started talking about cub scouts and popcorn
sales.
There was no more beautiful sight that night than of Destin,
running down the hallway with a trick-or-treat bag. After that night, after all
of the stories, I had him back. He said he was starving…
“Can we go to Hooters, mom?”
‘Of course we CAN!!!” I screamed with joy.
Best. Idea. Ever.
As we walked to the car, he told me about his night. He had a
really great time and that was a huge relief.
It’s cliché’ to just say “count your blessings.” Brody has
terrible days. Matt and I argue about dumb things like car washes and “The
Walking Dead” reruns. Sam sometimes does not sleep through the night. Destin
has a smart mouth some days. But they are all mine; it’s my family.
I’m so lucky I have a messy kitchen and mounds of dirty
laundry. I’m so lucky that my garage is a wreck and we need new curtains. I’m
lucky because somewhere out there, there’s a mom with a little girl who cannot
feed herself or speak at age 2. There’s a single mom eating a twinkie for
dinner while her down syndrome daughter watches cartoons.
We all have it pretty damn good, don’t we? There is always
something worse. Sure, autism sucks and I hate it. I hate it with every fiber
of my being. But I still have everything that comes with it. There are worse
things than non-verbal autism. And after this week, I need to let that just
soak in.
