Tuesday, February 4, 2014

Our Special Needs Journey:Child #1 - Julia's Story

As a teenager I was not aware I could love any one person so intensely and deeply until Julia was born.  I was utterly undone by this sweet little baby - it's amazing how little else in my world mattered once she came along.  And that is saying a lot, considering how self involved I was (am) at 16.

Yes, finding out I was pregnant at 16 was terrifying.  There was no Teen Mom on MTV, no Juno, only a huge shock factor. I hadn't been at that high school long (we moved a lot growing up) and was essentially a nobody among the 800+ students.  Being an honor student doesn't make you very popular- but wearing maternity pants to class will make you an instant celebrity.  Not the good kind - the one everyone gossiped about.

Thankfully I had some pretty awesome friends who loved me all the same and made that Junior year tolerable.  What's more, Julia's dad is pretty great too - we were married the Saturday after school ended - June 9th.  With little money or resources, (I did not yet have a driver's license and could not afford childcare) my focus became my new family.  I remember September 11th, 2001 - in each classroom we were watching the footage of the Twin Towers and I was having my teachers sign off on my "drop-out form."

Julia's always been a fighter - my water broke over 6 weeks early.  62 hours later, after much drama, she entered this world at 5 lbs 7 oz not breathing, with fluid in her lungs. They were able to revive her and she was whisked away to the NICU.  Due to a very weakened condition I was not well enough to see her until she was over a day old.  Proving she is one tough cookie we took her home after only 10 days in the hospital (oxygen, tube feeding, bili lights, I don't remember it all now)! (I do remember the out-of-pocket cost to us, as teenagers making minimum wage, was $19,820 - she was "paid off" by the time she was 3!)

It was not until Kindergarten that we found out she had autism.  At the time they labeled her with Asperger's, but over time her speech (brilliantly advanced at 9 months) regressed (unable to understand most of what she said by 4 years) and they corrected her diagnosis to high-functioning autism, since a speech disorder cannot co-exist with Asperger's.

Her current diagnosis is Autism, ADHD combined, anxiety disorder, sleep disorder NOS, dyslexia, dysgraphia, sensory processing disorder, and speech & articulation disorder. While she had very obvious signs of autism, we were not aware at that time.  We could not afford preschool and had pretty much zero friends with children as a basis for comparison (most of our peers were in high school/college, not raising kids).  

I can't recall my exact emotions or thought process at the time, but I remember thinking that knowledge is empowering.  This information could help us education and parent Julia, with whom I found myself often stumped by her behaviors.  The hardest part was her sister was also diagnosed just shortly after her. That was a big adjustment for our little family.

She has come so very, very far since then - it took years of occupational therapy and "brush" therapy & joint compression (where I spent tons of time each day using a sensory brush on her body) just to get her to wear socks. And this is still a pretty huge daily struggle 7 years later.

In an effort to summarize what is already way too long, flash forward to now.  We're in our 5th year of homeschooling and love it. She is thriving - her spelling improved almost 2 grade levels over the summer simply by playing Boggle every night and making crosswords with Scrabble tiles. She can fidget, use a chewy, take a trampoline jumping break, choose the topic we learn about - all kinds of flexibility that works for her and her learning style.

Yes, there are struggles - she is very easily distracted, moves slow but talks fast, is disorganized and is always losing her pencils and shoes and... She has the biggest heart (she WANTS to do her chores but often cannot recall the next step in a multiple process task such as bring laundry downstairs and then put it in the washer) and is always drawing sweet pictures for others. She's seriously creative. She has a deep love for the Lord and can't get enough of her Bible. Oh, and a great helper - cooking simple meals and looking after her little brothers! She is super excited to become a mom and a BSF leader when she grows up. :)

I'll be honest, after years of intervention, I was so glad to have her "graduate" speech therapy and when we took a break (insurance doesn't pay for very many visits and I was on bedrest in my pregnancy with Bruce) I thought it was for good.  I was surprised when, after her re-eval, she needed to restart Occupational Therapy.  As she approaches her teen years (she'll be 13 in July) there are so many new issues to address (hygienically challenged is how I describe it) and skills to learn.  

Julia has always been small - 3rd percentile - but she followed her curve so there was never any concern.  A little over 2 years ago her developmental pediatrician expressed concern at her lack of growth - she had not gained any weight or height in 2 years.  We limited her stimulant meds to school days only in an attempt to get her appetite up. When that didn't work we took her off them all together.  And when that didn't work we tried a pill that was supposed to increase her appetite. It didn't but it did manage to create a zombie-like tired version of her. So that was abandoned as well.

An endoscopy & colonoscopy revealed she has Crohn's and while we are treating it now, she does not complain of any symptoms (she rarely feels pain, even when she should).  That alone was not enough of an explanation so we moved on to Endocrinology and more testing & labs. Nothing remarkable was found and the doctors were all stumped.  A food diary revealed she was eating far less than I realized so we were sent to an eating disorder clinic.

Now that she has actually LOST weight (and gained an inch - woo-hoo!!) and her pants are fallling right off, the concern is great.  She has become very weak and has osteoporosis.  She is working hard in Physical Therapy each week and I am so proud of her persistence to gain strength!
Because insurance does not cover this service we had to hold off for financial reasons.  One of the biggest, most life-changing blessings we have ever received came this past January - approval of TEFRA for the 3 children with special needs!! This is medical assistance for children with disabilities in which we pay a copay for the insurance and then all services are covered - even if our primary insurance denies any coverage!!

Praise the Lord! Scheduling social skills therapy for the girls is next on the list, as it has been something the doctors have recommended for years now but insurance will not cover.  Also, we finally were able to make that consult appointment at the eating disorder clinic.  Last week we spent 3 hours with the intake team, getting blood draws, an EKG, meeting with a therapist and a medical doctor.  They diagnosed her with a selective eating disorder and admitted her to the outpatient treatment program!! They are confident they CAN HELP HER!!

Our first appointment was this morning and I am very excited about her care team! The therapist is specifically a Christian Counselor and her medical doctor revealed to me she met her husband in BSF!! A dietitian will round out our weekly appointments, making this a very time consuming program (3 appts a week, 2 hours or so total, not always on the same day, and not really all that close by our home) but it will be worth it!

I love this sweet girl dearly and I am glad to be getting her the help she needs - what an answer to very persistent and ongoing prayer!