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ASD, Take two!

"Parents who have a child with autism have about a 1 in 5 chance of having a second child with autism, a far greater risk than previously believed, new research shows." - New York Times

  My youngest daughter, "Doc"has always had very high levels of anxiety. Very cranky baby, crying unless she was nursing or sleeping. We assumed she was colic. She also experiences many sensory and repetitive behavior. In some ways she reminded me of Tink (her older sister), except Doc was very verbal.

9 months old

  At one years old I taught her to sign, using ASL.  She would sign "bird" in excitement when she saw one. "Cracker" was her all time favorite.  Some people thought she was deaf.  It was her way to communicate till each new word became vocal, so there is less frustration. When she start to walk, we noticed a limp, We called it her hitch in her giddy-up. One ortho visit later we found out her left leg was a little shorter. She still has some leg issues.
Update: Doc has been diagnosed with Hypermobility Syndrome. She has leg pain after a busy day and we're still working on finding out why.

ASL for "bird"
                                      
ASL for "grass"

  By eighteen months she had many words, her favorite was "giraffe". She was a picky eater, very oral seeking, hated her feet off the ground and anything that was animated (moved by itself). Certain noises and bright light bothered her also.


Sensory hiding spot 

  Doc got her nickname by age two. She developed a passion (almost an obsession) with doctors, all kinds. One day she came to me asked "Do you have a bleeder?" We soon figured out it was her way of asking if someone had a boo-boo. She used to walk around the house with kitchen tongs fixing imaginary splinters.  We attended a local playgroup. She would rather swing instead of play the kids. Anything repetitive she would enjoy (still does). I was concerned and wanted to get her help, I tried OT. They gave her an eval. Sensory Processing Disorder (SPD) was their answer, which seem to fit. I soon realized this OT was not helping her with her sensory needs. After moving to a better one, she was drop due to insurance not covering SPD.  November 2012 came, Doc decided she was done with diapers and was dry during the day. December she regressed and was back in diapers by mid January.

Doc. the bear

  Three years old brought a lot more challenges for Doc. She was aggressive and bossy. "You're not my best friend anymore!"- What she would say when she was mad at us. She was also lining-up objects and started repeating phrases from movies/tv shows. At first I thought this was neat that she was able to memorize them and use it in a conversation of her choice. This was around the the time Tink was diagnosed with Autism Spectrum Disorder (ASD2). I learned what Doc was doing was actually called Echolalia.  By this point I had a feeling Autism was paying another visit to our house. I called our local early intervention to set up an appointment. On the day of the preschool eval, Doc was calm and happy. Before the testing in the waiting room, Doc started lining chairs up. The examiner came and got us, not even noticing Doc's creation. The testing consisted of one-on one time with an adult in a quiet little room. Perfect environment for Doc, except we all know this is NOT how preschool really is. She performed perfectly and conformed very well. We got a letter in the mail stating at this time no IEP will be issued. My husband was in denial. He told me I was a research-aholic. No, I was mom with concerns, they are worse than the FBI! A few months went on and I continued to teach him about ASD. Then one day he texted messaged me from work. It's said "It IS ok to be different!" I knew right then that he was finally on board and we could work as a team to get Doc what she needed. November 2013 came and like clockwork, Doc was potty trained again. This time completely. December came and went, January, February (Doc turned 4) and March. A few accidents started happening. Then in April, around Easter she regressed for a second time and ended up back in diapers.

    Most of the time, this is the easiest way to travel. Sun was bothering her that day..

 At age four her routine became very rigid, I had to start using a visual chart on the iPad (something that we use with Tink). It worked!  Some days I would have to add something to our morning routine and that would cause a meltdown. She started not wanting to leave the house and only watching her "Little kids shows"- Disney Jr. A few of new stims were jumping and flapping her hands. She also started to flee in an overstimulated situation. 
It started off with her requesting to go to the bathroom, but then not needed to go. We started to call these sensory breaks. Then on day during a trip to BJ's she started to feel overwhelmed, got upset and bolted to the back of the store. I walked quickly, but calmly want after her (didn't want to cause a scene). When I found her she was scared, it was like she didn't recognise me either (most scariest moment). As I picked her up I calmly comforted her and told her she was ok, as she was kicking and screaming. I felt like I was kidnaping my own child. What a terrible feeling! The looks. Oh Man, the looks! Worst. Day. Ever!


  She is a very bright little girl with a lot of challenges. I love her to pieces. I just want life to be easier for her to maneuver in. We will be seeing a behavioral pediatrician soon. Time will tell...

Update:1/14/15 Doc was diagnosed with ASD1, which was once called Aspergers Syndrome. It's good to have some answers.
Update: 3/28/15 Doc was approved for a Behavioral Health Professional (BHP) at home. We are also looking in to more test due to her aggressive behaviors. She is doing the best she can.

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