Autism Diagnosis

   

Simply perfection!

     I woke up this morning having decided to post about Rosie's first day of Kindergarten. Unlike most children, Rosie's first day was Monday October 10th 2016. So literally just 3 days ago. However, I realized that if I wrote about the things I really want to share, a lot of you would be lost. So, I have decided to share a little background first. I will then share about her first day in a later blog.

     Rosie is 5 years old, she was born in May of 2011. She is the 2nd of 3 children. Her older brother is 20 years old. Yes, I have 15 years between my first two! That's a blog for another time. I will never forget the day she was born. She was the most beautiful little girl I had ever laid my eyes upon. Her skin was porcelain and she had the slightest amount of peach fuzz covering her head. The color was barely recognizable until we first went outside. When we did, the rays of sunshine bouncing off her almost bare head, revealed the most beautiful strawberry blonde fuzz I had ever seen.

     The first weeks home, were much like what I remembered from my oldest son. Days were filled with changing diapers, rocking, breast feeding and bathing and nights were anything but full of sleep! Everything was perfect for the first two and a half months. Then suddenly, she no longer was interested in breastfeeding. I had tried everything, but she would not latch. Out we went to buy bottles and formula, I wasn't going to let her starve. I had NEVER used formula, my oldest nursed for 11 months and transitioned straight to cow's milk.

Rose 10 months old

     I contacted the pediatrician for recommendations, and purchased the suggested formula. She would not drink it, and I panicked. Running to the store I frantically grabbed another brand. Nope, she wasn't having it either. I jumped back into the car and back to the store, this time I purchased Alimentum, she drank it! Yes I was so relieved and then suddenly, up it came. At this point I wanted to bang my head against the wall and I was beginning to acquire enough formula to open a daycare! Back to the store we went, I remembered a friend telling me about her child. The only thing they would drink was Similac Sensitive. What could it hurt? At this point we had practically tried everything. I grabbed a six pack of the ready to feed, went to the checkout and of course it had to be the same woman who had sold me the other 563 formulas (not really 563, but at this point it might as well have been) I paid and returned home. I prepared a bottle and she drank it! Hallelujah! She kept it down and Similac Sensitive it was.

    Over the next three and a half months, there were several things that seem odd now but at the time did not stand out. She would not sleep flat, she would scream unless she was in the swing, she refused any bottle except Playtex reusable and never seemed to want to interact with anyone. At six months she just started to roll over. She was beginning to say dada, nana, mama. Over the next 6 months she still would not sleep flat, she always wanted in the swing, she showed no interest in baby food at all but she did start using a new bottle. No longer willing to accept Playtex she started drinking from the Nuby stages bottle.

     I think when she turned a year old, we really began noticing something just wasn't quite right. By this point, any sounds she had started to use, completely went away. She would only eat certain things and refused most foods. She would rock herself violently, was not crawling or walking and just started sitting. Rosie transitioned to the 3rd stage of the Nuby bottle which was a cup. She was extremely happy all the time but would not seek out attention like most babies do.

     At 15 months she started crawling and around 16 months took her first steps. She still wasn't talking nor was she eating more than 4 or 5 different foods. She never made eye contact and we started noticing she would flap her arms constantly. Her reaction to loud noises or busy places was unusual to say the least. She would rock herself and flap her arms, the intensity would build the louder or busier the place became.

     By now, I suspected Autism. Her Nana also was very concerned about her development as was the pediatrician. When she went for her 18 month well child visit, they did the M-CHAT. This is a questionnaire that most pediatricians complete between 18-24 months. There are several questions, but 6 of the questions are "reason to be concerned". Does your child imitate you with peek a boo or patty cake? Does your child wave bye bye? Almost every question was answered "no"! The pediatrician referred her to early intervention and also to a psychologist for an evaluation.

     From 18 months until Rosie turned two, we saw a lot of specialists. She has psychological, speech & language, occupational, feeding and physical therapy evaluations. She also saw a pediatric physiatrist. At 2 she was diagnosed with Autism Spectrum Disorder and Hypotonia (low tone). We embarked on a journey of intense therapy and constant work at home. Rosie had twelve therapies a week, 5 days a week speech, 2 days a week occupational, 2 days a week physical therapy, 2 days a week oral motor/feeding and once a week she would go to the pediatric language center on UT campus.

     We did this for a year and when she turned 3, we met with the school system to write her first IEP. We ended up having to hire an attorney to get the services she needed and ultimately prevailed. She would attend a pre-k program at a local elementary school, there would be no more than 5 nuero-typical children and a general education and special education teacher. She continued the same rigorous therapies with the Pediatric language center at UT being replaced with applied behavior analysis, twice a week. 

     Rosie made huge gains, we saw a lot of progress and the therapy was definitely working. In March of last year, which was her second year of pre-k, Rosie got very sick. She spent the month of April in children's hospital, coming home only 3 days the entire month. She ended up needing a feeding tube. When they performed surgery to put the gastronomy tube she had a very hard time. The day after surgery her blood oxygen level was 78%, and they discovered she had a collapsed lung and developed pneumonia. She ultimately ended up having another surgery to change from a G-tube to a GJ-tube. Additionally, she was diagnosed with Epilepsy.

     Once we were able to return home, she was placed on hospital home-bound and received her therapy at home. Her psychologist had recommended that she stay in pre-k an additional year and work on socialization. The school was adamant this would not happen. I have never been known to waiver. I have always been a strong advocate for my children and this time, would not be any different.

To be continued.......

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Thanks for taking the time to read about Rosie.
                                            Until next time........