Thursday, May 14, 2009

Happy Birthday Emily...

Today is Emily's Real Birthday. You all know she was my Mother's Day gift that year, but did you know what a trooper she is? How she has the strength that amazes me beyond words? That she never gives up on anything she wants to do?
That's right. You see, I have mentioned before that she was my "Special" daughter. But I've never really gone into detail before. Because I wanted you all to see her, get to know her and love her as I do before you knew the road she has traveled down.

Emily was born into this world on May 14, 2000 at 6:36am as a Beautiful 8lb 11oz Bundle of Joy. We were so excited to finally see her. Our precious bundle that I fought so hard to keep inside me through a really rough pregnancy was finally here. Her first three months of life were uneventful. She was extremely happy and smiling all the time.

In August that year, I took Emily in for her usual 3 month shots not thinking another thought about this perfect life we had going. Until the next day. Emily immediately became lethargic and wouldn't eat. Her face started swelling. Then she became very agitated. It lasted throughout most of the day and I finally called the Doctor and said somethings wrong. They ended up having to give her a Benadryl shot because she was having an allergic reaction to one of the vaccines. They noted it in her chart to report to the state (all vaccines allergies they have too) and told us she would be fine and to go home.

But she wasn't fine, ever after that. Her eagerness to thrive had stopped. She was content to lay on the floor under her jungle gym for hours. She would stare at you as if she was looking right through you. My gut told me this wasn't normal. I had an older child to compare her too, and this wasn't right. I repeatedly took her back but kept being told she was just a late bloomer. Finally at her 1 year check up, she still hadn't begun crawling, much less walking.

Her pediatrician still was telling me she was just slow in developing, and that each baby is different. But he did tell me he was on vacation the next week. I knew it was more then that. So the next week when he was gone, I called his office and got them process a referral to a Pediatric Neurologist. We had to drive 2+ hours to get there.

When the neurologist called us in, he was waiting. He had been observing us in the waiting room, and watching Emily. He ran some test, but he knew already.

Emily was labeled with Autism Spectrum Disorder and Developmental Delay with Sensory Integration. We sat there in a state of shock. Trying to comprehend what he was saying and absorb it. He gave us statistics, information, but no hope. That was the longest drive home in our lives. Finally we broke down and cried. Every parents nightmare had just come true for us.

The hardest part was telling family. The tears, heartbreak and emotion of reliving it over and over. One day, someone told me "Cindy, you've always been a fighter all your life. Why stop now? Now you must fight for your daughter." And that's exactly what I did.

We started aggressive therapies with Emily. She had Speech Therapy 2x week, Physical Therapy 3x week and Occupational Therapy 3x week. And I worked full time. And I had another child who needed me. Exercises we had to do daily. It was grueling, week after week. We had to bring in a Behavioral Therapist. Emily couldn't communicate, so she would get frustrated and melt down. There were days I didn't think I could get out of bed and face another day. There were days I didn't think this family would survive. For three years...we pushed. Pushed her to do more, pushed ourselves to give more. We had to make a choice. Our Family above everyone else. DH and I lost a lot of friends during that time who couldn't handle the situation or that we weren't available anymore. But we gained some really awesome friends in the process too. And I became an advocate. I learned my rights, Emily's rights and the states obligations. I fought Doctors, Insurances companies and anyone who said she couldn't do it.

Her S.I. condition means her five senses (taste, touch, hearing, seeing, smelling) is at an extreme high and she can't regulate them. So we have to brush her skin daily. Introduce her to certain textures in her mouth daily. We have to speak slow and moderate the sounds in our house. She would hear all the white noise sounds we tune out.

On her second Birthday, she started walking. That same year, she transitioned from sign language to speaking 15 words. By three, she was walking with leg braces pretty well, her vocab was about 40 words and she was acquiring OT skills that they said she would never do. At 3 she entered a Speech and Language preschool and excelled. At five, we pulled her and put her into a private Kindergarten class because the school district told us she couldn't do it. She did. Just slower then the others.

We held her back in Kinder, and had her repeat her second year at the Public school. She needed school services and socializing. She is now in second grade. The oldest in her class and a foot taller, but excelling so much this year. She gets pulled 80% of her day to the Learning Center for one-on-one lessons, but is with her class for Music, Computers and Library. She has made so many new friends. And they are patient with her.

I still fight for her. With school district offices for more help, with school staff for more communication, with school staff that tells me she can't do something.

Emily, if you looked at her is a normal, beautiful little girl who sees the world very different then we do. She knows the struggle it has been for her, and what it still will be. But when I think back to that Doctors appt. 8 years ago when they told us she would never be normal, I am amazed at my little girl. She plays on the playground, running and yelling after her friends. She goes to sleepovers with friends, and birthday parties. She played soccer for the first time ever last season. She did gymnastics for half a year.
Don't even think about telling her she can't do something...She has her Momma's strength and spirit in her. She will do it all!
Happy Birthday my Little Angel, I am so very proud of you.


Kaci said...

I'm totally bawling at my desk. Emily, Elly and I love you so much! Happy Birthday beautiful girl, you are a blessing and blessed to have a wonderful mother.

Korndog said...

Happy birthday Emily, you sound like such a special and wonderful girl.

Cindy, you are a fantastic mother and you have raised a beautiful family.

Anonymous said...

As I am writing this through tears, I want to wish her a very happy birthday!

Cindy, did you by chance watch the episode of The Doctors last week premiering Jenny McCarthy? It was VERY informative!

Robert, SLP said...

Thanks for sharing this amazing success story. As a speech therapist, I do what I can to help the kids I work with, but the ones that really make progress are those with parents like you who absolutely refuse to give up on them and become their children's own live-in therapists. Keep up the good work, and best of luck to you and your family!

Tooj said...

What a very telling story. Thank you for sharing it with us. It's stories like these that Emily and your children will come to love to read as the years pass by. I am always in awe of how families do what they do, day in and day out. And can I tell you, if her shirt says what I think it says...hilarious. :) Will Trade it.