My Story: Lost and Found

I'm a brand new Domestic Diva here at Blissfully Domestic, and I'll be bringing you all things Special Needs.  Whether it be tips on getting through the day or what to look for if you suspect your child may have a disability, I hope to shed some light and offer some support for those of you that need it.  I've read that the statistics now are 1 in 6 children has some kind of a neurological disorder, so I know there are many of you out there looking to connect and looking for help.  I hope to offer a piece to your puzzle.  If you have specific special needs topics you'd like covered, please contact me.

I thought the best way to introduce myself is to share my story.  Please feel free to share your own story in the comments.

Originally published in NWI Parent magazine, Jan 2008 issue

I’ve spent many a late night lying in bed, staring at the ceiling, and
thinking about my life as a mom thus far. I analyze the events that
have taken place and wonder if these details will ever stop scrolling
through the back of my head, like the news ticker on the bottom of CNN.
These details of my life made me who I am today, a mother of children
with autism. I believe they should be shared so others can have hope,
and can see they are not alone in their journey. This is our story.

Charlie
was born in the fall of 2002, and from the start he was not a typical
baby. He cried all the time (really), and it seemed like we could never
keep him happy. Even though we knew Charlie was not like most babies,
we really had no idea how different he truly was. When he didn’t smile,
we figured it was just from teething; and when he couldn’t eat solids
and gagged on all his baby food, we thought it was just because he was
just a picky eater. When he wasn’t speaking, we thought he was a “late
talker”; and when he wouldn’t play with his toys, we thought he was
just too smart for them. We didn’t really put all these behaviors
together, because at every visit to the doctor we were assured these
were just a phase and were told not to worry. But when bath time turned
into a torture session, and the dripping water was like dripping acid
on my child’s head, I became well aware that we weren’t dealing with
“just a phase.”

I’d like to say that voicing our concerns to our
doctor provided some answers, but it didn’t. It wasn’t until his 2-year
appointment that his lack of speech combined with the other behaviors
finally raised any red flags. It was the first time we heard the word
“autism” associated with our family, and it changed our lives forever.

A
week before Charlie’s diagnosis I had given birth to our second son
Jamie, so the timing of all of this wasn’t exactly ideal. I was dealing
with the demands of a newborn, along with the darkest time of Charlie’s
life. Charlie wasn’t in any kind of therapy yet, so it was just the
baby, the lost boy and me, while my husband worked a demanding job 90
minutes away. It wasn’t the baby’s screaming that bothered Charlie, but
the other way around. Both kids were in diapers, but Charlie refused to
wear them, or even get dressed. He would scream and tantrum for hours
any time we attempted to put a shirt on him, never mind the pants and
shoes. Even when we could get him dressed, getting him into a car seat
and buckling the seat belt often proved impossible. Most days I felt
like just giving up. My hormones were going nuts, and most of the time
I was just trying to get through each hour, each minute, until my
husband would return home and save me. I couldn’t ever cut Charlie’s
hair, so if you can picture this little boy—wild hair, wild eyes, no
clothes, who wasn’t speaking—it’s like he was being raised by wolves.
Our son was lost inside his own head, and we felt like he was crying to
get out. We had to get him help, and fast.

A few months later,
Charlie finally began therapy. He was in speech therapy, occupational
therapy, behavior therapy and a special ed preschool. Slowly we started
hearing words coming out, and it wasn’t baby talk, it was this hugely
advanced vocabulary. Week after week we’d hear more words, less
screaming and even see a smile or two. We were elated, and felt like we
were finally “meeting” our son for the first time. He was smart, funny
and loved to dance. Who knew? Finally, he was being set free.

Since
that time, we’ve been in a mode of . . . screw up, learn, do better,
and learn some more. Charlie is doing better and better, and is set to
be in a mainstream kindergarten this fall. Our second son Jamie, who we
thought was more “normal” than Charlie, has taken a very different
path, but has also found himself on the autistic spectrum. We are still
in the beginning stages with Jamie, learning what works and what most
definitely does not work. I have learned that the best tool in my
parenting arsenal is patience, especially when I feel as though one
more thing might just make me snap. 

It can be hard not to
think about how things could be, should be, or may never be. But I have
learned that this life, these kids—my world, is exactly what I was made
for.

For more about her life with three sons and living with autism, check out Arianne’s blog, To Think Is To Create, and subscribe to her blog here.

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This entry was posted on Thursday, June 19th, 2008 at 6:00 am and is filed under Special Needs.