Wednesday, October 15, 2008

My Story

We were blessed with a beautiful baby boy. In a lot of ways, he was everything we dreamed of however, in other ways, he came with quite a few surprises. Suddenly, the years of babysitting, child development classes, & psychology all seemed useless.
Why did the hospital even allow me to take this baby home? I was a failure at nursing, he spit-up constantly and baths were torture for both of us. I felt like a complete failure as a mother.
He hated eating solids &
behaved as if getting his faced washed and his nails trimmed were absolute torture.
Was I sent home with the wrong instruction manual?
I felt completely trapped in my own home. Every time I took Alex shopping or to visit family, he had a complete meltdown or would break out in hives.
His allergies & enema were so severe that I tried to avoid taking him anywhere. People often asked, what happened to his face?
Basically, for the 1st year of Alex's life, I counted the days with relief that I somehow managed to keep him alive.
As time passed, Alex grew. His sweet & joyful deposition remained constant despite the fact that he continued to miss many of the typical developmental milestones.
Attending church & social events was an absolute nightmare. Alex was incapable of sitting still.
People would ask, "is he having a bad day? I often responded, "No, he's having a bad life."
His gag reflex was so sensitive that he threw-up every time we had to restrain him.

Quite a few people believed that Alex was hearing impaired
. He didn't respond to his name & he often avoided eye contact. Pointing & waving were beyond his grasp.
When Alex was 18 month old, we moved to Everett, WA for an engineering job with Boeing. We also conceived our second son. Unfortunately, during the 9 months of my pregnancy, Alex's behaviors spiraled out of control. Alex only used 3 words,"ready to go" other then that, he continued to make aloud piercing noises. Alex ran away every opportunity he could get.
When I explained Alex's issues, to 2 different pediatrician, they both spoke to me like I was a completely ignorant mother & just said he'd grow out of it. I checked out every book I could find, nothing worked.
Alex continued to be a complete handful. He climbed every surface & destroyed just about anything he could find with buttons including; digital cameras, remotes, cell phones & computer laptops. There were no safe places to hide anything. Within minutes, he could climb & removing items from the top of the fridge.
We had to replace the locks with double deadbolts on everything door. Alex's behaviors continued to spiral out of control. Finally, in desperation for answers, I Goggled "poop smearing ". Hundreds of articles and websites about Autism popped up. The websites described all of Alex's issues.
With the right words to use, we were finally able to find the services we needed.
Now, after countless hours for Speech Therapy, Occupational Therapy, Developmental Preschool, Habitation and Music Therapy, Alex's world has opened up so much! The best part is we haven't had to pay for any of these services. Alex is now 4 years old & Tyson is 2. Both of our sons receive 3 individual Therapy's a week on top of Spice preschool & respite. It takes a lot of energy to keep our little family running, however we could never do it alone.
The services we receive make a huge difference for our family. We are so grateful for the amazing therapists & care providers that have made every day just a little better for our sons. (This photo is of Alex & Cody @ Guthrie Mainstream where Alex receives Habilitation & Respite. )

4 comments:

✩Molly✩ said...

Even though I have been around for that entire story to play out, it was so good to read it again. I think it is a good catharsis to be able to write and express the feelings we often have.

You are an amazing and strong person, and I respect your patience and loving disposition. You are such a good Mom. I can't wait for your site to take off and the stories to overflow these pages. What a noble goal.

Anonymous said...

Sarah, you are an angle! I love what you are doing here. Now I guess I have to be cool with sharing you with others. You have been such a wonderful sounding board and inspiration for me. In reading this post; in the midst of my gnarley life right now, I was somewhat comforted in realizing that life is not just about me me me and how I feel all the time. Being so involved in a "high-maintenance" lifestyle w/ special needs children, and a mom that feels like she is cracking...I realized I am not the only one in this spot.
Rock on Sarah! "SMILE" is brilliant. You are inspired as well as inspiring!

Anonymous said...

This story is a truly amazing gift. Thank you for sharing your treasures and trials. Your children are beautiful and their light shines so brightly. Thank you for sharing.

Anonymous said...

Sarah, I love you and your post. I had forgotten Alex had such skin reactions so young. You are such a great mom.