Friday, May 6, 2016

Somewhere on the Spectrum. Written by Patty Peterson

My name is Patty and my daughter, Irina, is “Somewhere on the Spectrum.”
  
Our story starts a little differently, as Irina was adopted at 2.5 years old.  We never saw any typical milestones.  She had been in a Romanian orphanage since birth.  She was nineteen pounds when we brought her home.  She couldn't walk or talk.  She couldn't eat solid food.  She wasn't potty trained.  She spent much of her time rocking, grinding her teeth and crying. As time went by and her improvement was slow, we realized that love, nutrition and attention were not going to be all that she needed.  It was then that we got the diagnosis of PDD-NOS.  We were upset, but not surprised.

Then came multiple therapies.  In the late 90's, there wasn't as much awareness as there is now.  Insurance coverage was even more sparse than in this day.  Imagine my surprise when I was informed that my insurance would not cover speech therapy for her!  They would only cover it if she had her speech and lost it due to injury or stroke! Next came a sea of paperwork and appointments to get medical assistance in order to get therapies for her! Medical assistance was a complicated process- continues to be- but it was a life saver!  There were therapies everyday in those days.  People coming to the house, going for speech and occupational therapy.  A behavioral specialist, a TSS, all awesome people who took a lot of abuse from Irina.  These people changed our lives and we are still friends with many of them today. I remember the days I would cry, just hoping that someday she would talk.  Now I have to ask her for just five minutes of quiet time!

Her sensory issues were overwhelming in the beginning.  The first time she felt the grass, she screamed!  She was always rocking, playing with her own fingers, opening and closing every door in the house.  She broke everything! She flushed everything down the toilet.  My husband is awesome at unclogging toilets! Thankfully, we found weighted blankets, vests, beanbag chairs.  She loved music, still does.  We sang everything to her.  When she could, she started to hum along.  We spent countless hours on the rocking chair together singing “You are my sunshine...”  Every verse, every time! Now, in her room, she has silky sheets on her bed, uses an electric blanket and plays her music so loud the floor vibrates! 

School is a challenge for her.  She has anxiety and an intellectual disability as well.  Adds to the challenges.  There was the preschool that almost kicked her out.  Grade school with adapted classes and therapists that went to school with her.  Middle school on has been a hodge- podge of different programs to try and find what works.  Irina is almost twenty now, all those school years are a blur.  Now she is in a program that is part work experience and part life skills.  It has been awesome in teaching her skills she needs for the rest of her life.  Hard to believe that we only have one more year of school, then real life begins!

We made the choice, at a young age, to try medicine as part of our regime with her.  It was a difficult but necessary choice.  She has had many medicine reactions, even becoming aggressive as a side effect.  It's not an easy choice.  Now she is stable on a plan that works for her.  She can manage them almost totally independently and is better at  remembering her meds than I am!

It's such a long, difficult, never ending road.  We try to count every blessing and celebrate every victory along the way  She is kind, she is funny.  She remembers all the details you tell her.  She has become very verbal and very social.  If you make eye contact with her, she is going to talk to you!  Last summer, while on vacation, we were waiting in a long line of women to use the bathroom.  Typical right? The woman in front of us looked at Irina and smiled.  That's all it took.  Irina introduced herself and asked where the woman was from.  Soon, all the women in the bathroom were talking about where they were vacationing from.  Even women in the stalls!  I was the crazy person choking back tears.  My daughter, the kid who used to sit under the table and rock and stare at her fingers-- my daughter just got a whole room of people talking to each other!  In many ways, she has become more social than me! 

She's come so far. In many ways it gets easier as they get older, and in many ways it gets harder.  She wants to work with people with special needs when she is finished with school.  So we will figure out a way that she can do something she enjoys.  That's what we all do for our kids, help them figure out where they "fit." Her intellectual disability complicates it, but she is capable of making a difference in this world.  She is not like Rain Man or this generation's Sheldon Cooper, but every day, even on the darkest days, ever since she was little, she is my sunshine!

Irina and Patty

**If you would like to share your story in the Somewhere on the Spectrum series, please email it to grapejellyonpizza@gmail.com.  As always, join us daily at the Grape Jelly on Pizza FB page

1 comment:

  1. SUCH A TOUCHING STORY!! THANKS FOR SHARING!!

    ReplyDelete