Friday, May 20, 2016

Somewhere on the Spectrum. Written by Mary

Somewhere on the Spectrum

Lee was born in the winter of 2012, just 17 months after his big brother. Life was crazy, to say the least, with a toddler and a newborn. 

Lee's big brother was a late talker. He received speech therapy for just a few short months through early intervention, and once he finally started talking at 18 months, he never stopped. So when Lee turned 1 and also didn't have any words, I figured he would be just like his big brother. I didn't stress about it, but I did call Early Intervention and start the process for speech therapy. I already knew the routine and was happy to welcome back our speech therapist. 

That summer, we noticed that he was drinking excessive amount of water. We always had sippy cups of water within reach for both boys, but I was refilling Lee's cup much more frequently than his brother's cup. I brought it up with his pediatrician, and some initial testing showed that he likely had Diabetes Insipidus, a condition marked by excessive water consumption. We were referred to an endocrinologist who agreed with the initial diagnosis and began additional testing (blood work and an MRI) to confirm it. 

During this same crazy summer, Lee had his 18 month check up. At that appointment, he failed the M-CHAT autism screening. He still wasn't talking or communicating with us in any way. He didn't point. However, as a stay at home mom, I was able to anticipate all his wants and needs and keep him happy, so my husband and I hadn't been worried. Plus, we still figured he was just like his older brother and would start talking when he was ready. However, the pediatrician suggested we make an appointment with a developmental pediatrician, so we began the process with CHOP.

While we were waiting for his appointment at CHOP, we got the final results of his testing for Diabetes Insipidus. Negative. His endocrinologist was not sure what was causing his excessive thirst, and suggested maybe he was hungry. And that's when it hit me. My poor baby was drinking so much because he was hungry, and he couldn't communicate that he needed food. He drank water to combat his hunger. It broke my heart. I had unnecessarily subjected him to all that testing.That's the day I knew in my heart that he had autism.

At that time, I had some well-meaning friends and family tell me there was nothing wrong with him. He was still just a baby. He didn't need an appointment with a developmental pediatrician. And that was hard, because I was in the process of trying to accept his delays and help Lee however we could. I tried to describe it by explaining that other children will point if they see a cookie. They might grunt or groan if they don't have the words, but somehow, some way, they will convey they want that cookie. But throughout Lee's entire life, he has never attempted to communicate anything at all. There were other signs of autism, too. He didn't make eye contact. He was stimming and toe walking. He would line up his vehicles and just stare at the wheels. 

On January 2, 2014, just one month before his second birthday, Lee was officially diagnosed with autism spectrum disorder. We were devastated, but not entirely surprised. 
On the ride home from his appointment, I called his case manager at Early Intervention, which he already had due to his speech therapy. She met me at my house that very day to sign the papers necessary for additional therapy. I can't say enough about how supportive they were of us during that difficult time. Within a month, we had increased speech, started occupational therapy with focus on Floor Time, and he began working with a Special Instructor twice a week using Verbal Behavior therapy. We also started Wraparound Services and used our TSS hours to continue the Verbal Behavior therapy program.

Very slowly, we started to see progress. Within a few months, he started communicating using a picture board, and we were thrilled! Then, the words started coming, and by that summer, entire phrases! I used to take notes on what he said to share with his therapists. The days he said "more cracker please mommy" and "I see doggy" left me in tears. Lee was starting to leave his world and come into ours.

By that fall, he had made so much progress that I thought he was ready for a 2-year-old playgroup at a local preschool twice a week with typical peers. However, it was hard for him. He couldn't sit during circle time or focus on a task. And he certainly didn't interact with his peers. He had a TSS with him at all times, but if for some reason she  couldn't make it, he wasn't allowed to attend. That was hard, because it just reinforced that our son was "different." But, as the year went on, his progress continued. 

This past fall, he started at a new typical preschool, 3 mornings a week without a TSS. His new teachers assured me that he would be okay without one, and I was thrilled that they were going to give him a chance. And they were right. He has been thriving at this school. His progress is incredible. He is communicating appropriately for his age. All of his stims are gone. He is interacting more with his peers, and even making friends. Last week, a BCBA from the IU went out to observe him at the school, and she told me afterwards that he was indistinguishable from his peers. She suggested that we may need to remove his diagnosis, and CHOP has hinted that they are considering this as well. We continue to be blown away by how much progress our little guy has made.

My advice to other parents is to embrace Early Intervention. This program changed my son's life. He started therapy at an extremely young age, and the results have been absolutely incredible. It's scary to think where Lee would be right now if he didn't have Early Intervention therapy.

I've known parents that have looked the other way when they saw a delay in their child. I also had someone tell me once that they didn't want their child to be "that kid" who needed therapy. Really? To me, that's selfish. When you don't get help for your child, you're only hurting them. It's not about you or your feelings, it's about doing everything you can to help them. And with Early Intervention, your child will receive free therapy from an entire team of amazing people that are on your side. They'll do everything they can to help your child succeed. Embrace that help. Your child is worth it.

Lee holding hands with his Big Brother.


**If you want to share your story, please email me at grapejellyonpizza@gmail.com.  As always, join us daily at the GJOP FB page.  

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