Special Needs Spotlight || Daniel

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Robin:  Around the time of
Daniel’s third birthday, I took him to see his pediatrician for his annual
visit.  During that visit, the doctor first brought up the subject of
autism.  She must have been cognizant of the fact that his expressive
language wasn’t where it needed to be and his eye contact with her was lacking.
When I got home that day, I immediately Googled “autism,” and
as I clicked page by page by page, everything suddenly came into focus.
My husband, David, and I had always noticed that Daniel was unique, but
we didn’t associate it with autism spectrum disorder.  We had noticed that
Daniel liked rewinding the same scenes in movies on DVDs over and over and over
again, saying, “see again.”  We had noticed that Daniel would
line up his foam alphabet letters in the tub across the entire span of the
tile, making a straight, ordered line.  We had noticed that he avoided
other children his age at the park, not wanting to get close.  We had
noticed that when he got excited, he would flap him arms up and down and prance
around on his tippy toes.  These three areas that we had been aware of but
uneducated about, we now learned were the three major components of autism:
repetitive behavior, social regression and language delay.

The day that I sat at my computer and read about autism, I knew
that Daniel was autistic.  In a way it was a relief because those
quirky things that I couldn’t explain were now explainable.  Our journey
had begun.  Honestly, I feel much the same today as I did then.  The
word “autism” did not scare me then; it does not scare me now.
I believed then, as I do now, that God made my child exactly the way He
intended, that he is a blessing, and that He has a purpose and a plan for his
life–with autism.

Robin:  Daniel has a
therapist who comes to our home five days a week for ABA, Applied Behavioral
Analysis, which helps him in many different ways.  Early intervention is
so critical, so this is a part of our daily life.  Daniel has to learn how
to have a reciprocal conversation, the back-and-forth turn-taking that
neurotypical children learn without effort.  He has to learn what
different facial expressions mean — happy, sad, excited, bored–because many
children on the autism spectrum have difficulty interpreting those social
“cues” and it is why they struggle with peer relationships.  ABA
teaches him these things and much, much more.  We try to go out as much as
we can into the community so he isn’t anxious.  We love to go the beach,
walk around the mall, or go to the park.  One of his favorite things is
going on the carousel at the harbor.  Because he has so much structure
in his special ed class and then therapy right after he comes home, we
are intentional about injecting fun into our day as much as possible!

Robin:  The biggest worry
we face is not being here someday for Daniel.  Truthfully, as I write this
now, it strikes fear in the very pit of my stomach, a sadness that I can’t
fully describe.  We pray with all our hearts that God will always protect
him, always keep him from harm when we are not here on earth to watch over him.
I also fear for his self-sufficiency as he goes into adulthood, that he
will be accepted and not ridiculed, loved and appreciated for his differences.
I fear for his vulnerability.  He is only five now, and he has made
such tremendous progress in the last year that my fears may be for naught.
It is my fervent prayer.

Robin:  On the topic of
humor, honestly, apart from my faith in God, I don’t think I could survive
without laughter on a day-to-day basis.  Daniel, because of his language
differences, sometimes says the funniest things.  Very recently, as we
prepared to go play outside, I told him to put on his shoes.  He said,
“I don’t have to wear shoes.  I want to wear my feet.”
One, it’s funny; two, it actually makes perfect sense!

Robin:  Daniel loves
garbage trucks.  Monday is trash day at our house.  Every Monday
morning he anxiously waits for his favorite driver, Manuel, to come.  On
February 10th, 2014, Manuel came with a special gift for Daniel.  I had
been videotaping trash day and captured the whole thing on tape.  So
touched by the event, I posted it to Facebook, shared it with Autism Speaks,
and it went viral, being seen by millions of people around the world!

Robin:  When people first
meet Daniel, he is very quiet and often won’t make eye contact.  It’s so
common with autism.  One thing that scares him is when strangers approach
too close, too fast, or are too loud.  He feels very uncomfortable when
people are looking at him.  It’s important to remember these things when
meeting an autistic child for the first time — or the second or the third!
I would say don’t mistake it for bad manners.  Social situations can
be scary for them.

Robin:  What I would say
to other mothers who are just learning that their child has autism is to learn
as much as you can about your child’s autism.  Be an expert and know what
your child needs so that you can advocate for him or her.  Don’t rely only
on what the doctors tell you, which often is not a lot, but do your own
research.  Your child will very likely need services at some point, as
Daniel did.  Sometimes we are placed in the position of having to fight
for those services.  At a team meeting where his services were being
decided on, everyone around the table, the psychologist, the county regional
representative, his ABA providers, and us, each introduced ourselves.
After I introduced myself, I put a small 2-by-3 framed picture of Daniel
on the conference table and said, “And this is Daniel.”  He
doesn’t have a voice unless I speak for him.  Even if your child has a
therapist or is in a special ed class, it’s still our responsibility to help
them make progress.  God has a plan and a purpose and He chose you to walk
this journey with your child.  What a privilege and a high calling.

Robin:  What is the
biggest lesson that I’ve learned?  I’ve learned so many, but I think the
biggest one is that life is beautiful.  Every single moment of it.
That’s what my boy has taught me.  I learn from him every day as I
see life through his eyes.  He sees things so simply.  I may not ever
fully see it the way he does, but someday perhaps I will.

“For now we see through a glass, darkly, but then face to
face:  now I know in part, but then shall I know even as also I am
known.”

I Corinithians 3:12

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