Monday, May 21, 2012

What to expect when you're not expecting it

So for 9 months you have every book under the sun about pregnancy, Dr appointments and labor. By the end of the 9 months, you can recite what fruit your baby looked like week-by-week.

You then have "Newborns for the 1st year or so" types of books to get you through every sleepless night, every fever and every little speck on your baby to know what its about.

What I didn't have was an "around 18 months something seems off" type of book to reference. What I did have, was my motherly instinct and thank God for that. Lia passed her 18 month M-Chat appt and despite my endless babble at the pediatricians office- they assured me Lia was on track and "just quirky".
Parents! If your instinct is telling you something- go with it! The Dr doesn't spend every moment with your child- and you know them best. Lia spoke early, sat up early. She did not crawl until 13 months and did not walk until 16 months; which under the big umbrella of ranges- is still ok. However, around 18-20 months Lia seemed to stop saying some of her regular words, but could count 1-10 effortlessly. She loved spinning. She was very picky with food and did not use utensils. Her motor skills- both gross and fine, were very clumsy. Simple stacking toys were a struggle for Lia.

A friend suggested I place a referral into "NJ Early Intervention"- something I had never heard about before and probably most people do not know about. They came to my house for an initial evaluation in March 2011 and advised Lia was eligible for services. And so began the whirlwind of Lia's therapy schedule for the next year. She did developmental therapy once a week, Occupational Therapy twice a week and Speech therapy once a week. She did some extra speech therapy last summer and did a month of Physical Therapy before preschool started. Lia was on the wait list for CHOP and St. Christopher's for neurology and developmental appointments. Again, Parents! If you are having doubts- contact someone right away- because it will be a long wait list with any facility. 6 months later was the St. Christophers Neurology appt and 9 months later was the CHOP developmental appt.

And so ensued the Acronym's of medical terms...

Lia's OT diagnosed Sensory Processing Disorder (SPD) in July 2011.The neurologist advised us in August 2011 he believed Lia had PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) because of her good eye contact, laughter, etc this is what he diagnosed. In November 2011, CHOP diagnosed Autism Spectrum Disorder (ASD) and Mixed Expressive Receptive Language Disorder (MERLD). All of the diagnoses were not really a shock to me- I was just waiting on confirmation. While you feel like a good parent going to these Dr appointments- I cannot say that they really provide you with much resolution. I have had to navigate the path of therapies, appointments, insurance, IEP's etc by myself, from my own research.

Early Intervention runs from birth to 3 years of age- then they transition kids to Pre-School. So 3 weeks ago, all of the therapy for Lia ended and the transition to preschool with school-based therapy began. In addition to preschool, I have her doing OT and Speech privately and she has been doing Therapeutic Horseback riding since August 2011.

Autism now affects 1 in 88 children and 1 in 54 boys. More children will be diagnosed with autism this year than with Aids, diabetes and cancer... COMBINED. More research and funding needs to be done- as all of these kids will be adults soon and better opportunities need to be available.

Lia has accomplished so much in therapy and continues to amaze us every day. I don't look at her with a diagnosis- I just look at her as "who she is and was meant to be". I am lucky to have supportive family and friends who have shared in this journey with us.

"Autism Awareness Butterfly Womens Vneck Dark Ts Shirt"


  1. Emily, as a parent who has gone thru this not once but twice I have to say you're doing great! We found Hershey had a great eval program (but that was years ago). They were much more hands on and caring than CHOP. We thought CHOP would be the be all and end all, only to find that after going to much smaller clinics where we got great one on one all day service CHOP rushed us in and out, basically saying 'why are you here?' So don't be afraid to go outside the big peds clinics if you think it will help. Sometimes you need the support as much as the diagnosis for your child. Hershey (then Elizabethtown Hospital for Children) gave us just that. Lia looks like a happy little girl-kudos!