World Autism Awareness Day

Perfect. Autism awareness day is today. And today was one of the WORST autism days we've had in a LOOOONG time!! Sucky. Screaming. Crazy. Screaming. Cranky. Screaming. Meltdowns GALORE. Screaming. A headache. (aside from all my other health issues I am dealing with) Did I mention SCREAMING!! The kids too. :) Just NOT a fun day. I just have to wish for bedtime to come quickly. Although that doesn't always mean relief. Not with night terrors, and Jack refusing to stay in his bed. Anyway, this is not what I wanted to post today. So I will move on.

On this day, I wanted to tell our kids' story.

Tyla Paige Allen

Born August 19, 2004. Cute, little rolley polley baby Ty Ty. I didn't come into her life until Oct. 2005. But from that time on, I can tell you what I know about our little angel. She was a pretty happy baby. Oh she LOVED her daddy!! He couldn't even walk outta the room with out her heart being broken!! She had people fall in love with her instantly! She didn't talk until well after 2 yrs old. Even then it was "its a ball" for everything. Or she would say "whats that whats that whats that" That's about it.

She never responded right to pain, or when she got hurt. She would lay on the floor and hide her face. One time while we were in Idaho, she picked up a wasp! We didn't even know what happened at first, only she wanted Matt and buried her face in his chest. Then we saw the wasp on the floor and her hand starting to swell.

She never liked to be cuddled or kissed. Holding hands was iffy at best. This girl could (still can't) never sit still!! Constantly on the move or wiggling. She would take off running, with NO fear, any direction. I still remember going to a staff swim party and she took off so fast it was scary! My Dr called her the "track star" every time he saw her after that.

Then came that day in September 2008. Her mom called Matt and asked if we could meet her the next day to talk to her and her then fiance. She had taken Tyla to a developmental pediatrician and came home with an autism diagnosis. This struck Matt harder than me. I wasn't surprised, being a medical assistant for a pediatrician for 8 years, I kinda recognized the signs but still didn't want to admit it. It was too hard.

After that diagnosis, we started her on supplements and the GF/CF diet. 3 weeks later, MAJOR turn around!! She started saying WAY more words, she was a lot more calmer, and more pleasant than ever! And she is constantly improving more and more everyday. She has recently been FULLY potty trained !!! Hallelujah!!


Then there's Jack...

Jack Matthew Allen born January 11, 2007. It was a rough pregnancy. I went into labor at 27 weeks due to a "hyper dynamic cervix" meaning it was shortening prematurely. I was put on bed rest and terbutaline and ibuprofen to help stop the contractions. Well it worked for 10 more weeks. Jack was born a healthy 7 lbs 11 oz. I was put on antibiotics for the last month for having Group B Strep. The day Jack was born he was given a Hepatitis B vaccine AND antibiotics because I was group B positive. I wasn't aware then of what I am now. Unfortunately.

That first night in the hospital was pure hell. Seriously. I couldn't get Jack to latch on AT ALL. The lactation consultant REFUSED to let me bottle feed because she didn't want him to get nipple confusion. I wasn't even allowed to give him a pacifier. I was told to SPOON feed him! A plastic spoon from the cafeteria! Basically I poured it down his throat. Poor baby! Finally somewhere in the middle of the night I said forget it!! This is NOT worth trying to breast feed. I talked to my nurse and she agreed with me. He was hungry! He needed to suck! He needed that comfort! I hate that lactation consult. I hate her for making my baby suffer that whole night. Not to mention Matt and myself!

He was a BEAUTIFUL baby. Pretty happy...most the time. He didn't like the swing. He would only drink from certain nipples and bottles. He wouldn't hold it with his hands, he used his feet. Then I thought he was silly. Now I know it's because of his sensory issues, he didn't want to touch it. He wouldn't eat baby food. Only certain ones and certain brands. He knew the difference!

At 12 months old, he still wouldn't wave. Still had no words. Still wouldn't eat food. He cried EVERY Sunday night when my whole family would get together for dinner and it was loud and chaotic. It stressed me out every time. I felt like everyone hated when we would come, because Jack would inevitably have a major meltdown. And when there was someones birthday and we would sing and have candles...it was like a MAJOR catastrophe! Not to mention he wouldn't eat cake, ice cream, candy ANYTHING!!

I had my concerns. But everyone always said, "he's a boy" "boys are slower" or "he's fine, you're just paranoid" Then after Tyla was diagnosed, I KNEW Jack was too. I took him to his regular pediatrician. I filled out the milestone form. At 20 months old Jack scored at SEVERELY delayed. And with his sisters diagnosis, they chose to diagnose him as being "at risk for autism". With that, I got on the phone right away with AzEIP, and did everything I knew to do.

Then I went into the hospital with premature labor with Baby Joe. He wasn't due until Dec 12. On October 25 I was put in the hospital. On Halloween, he was born. But while I was there AzEIP came out to do their interview at the hospital just so we could get the ball rolling. I am so grateful for that! Jack finally started services 2 weeks before his 2nd birthday. He was completely non-verbal. He would spin circles constantly. Now, he says about 200 words spontaneously. He doesn't spin circles. He still flaps his hands, but as far as stimming, that's about it.

He improved tremendously when we started him on supplements! Even his therapist noticed a remarkable difference. We still haven't been able to get him on the diet. His foods are way too limited. He eats pop tarts for breakfast. Chicken nuggets for lunch. Ramen noodles for dinner. NO variations. We had got him into a feeding therapist who is IMPOSSIBLE to get in. She never has any openings. I am way saddened to say, we couldn't afford it. She was private pay. $100 an hour for once or twice a week was not going to be practical for us. So we are still playing the waiting game with DDD to get him into one of theirs. Until then, we do what we can.

They are both our little angels. They bring us so much happiness and joy. I couldn't imagine our lives without them. Autism and all. We pray that someday they can PROVE what causes this so that not so many families will have to suffer. So less kids will have to suffer. We love our Autism Angels!!

P.S. I wanna give another shout out to Scrappinblogs.blogspot.com for making this Autism Awareness layout for me last year. I emailed Tycie and told her what I wanted and how I think she should do it and she so happily obliged!! AND did a fantastic job!!! Thanks again Tycie!