Sunday, April 24, 2011

eSpecially Parents: Paula's Story

Well, let's see, my life in a nutshell...I always dreamed of having a family with lots and lots of kids.  I wanted about 4 since I'm one of four and that number seemed a  good number to grow up in. Well, unfortunately life did not turn out that way.

After being married for 5 years and trying to conceive for many of them, we found out we couldn't conceive without the help of science.  Thousands of dollars later and a few unsuccessful attempts, we got lucky and were pregnant with twins through in vitro fertilization.  One boy, one girl.  We were over the moon in happiness.  Seven months into the pregnancy I had premature labor contractions and found out I lost one of the babies.  It was a hard, sad time. I had to be on bed rest for the remainder of the pregnancy.  At eight months, my beautiful son, Tye decided he wanted to be born early.  He was just a little guy, 5 lbs, 8 oz. but otherwise perfect and healthy.

Tye was perfect in every way.  We were so happy, enjoying every moment with him.  I marked almost every day of what he was doing or what we did on one of those "First Year" calendars.  He was on target with all his developmental milestones until, at 15 months, we started noticing that he was not really speaking much, and not responding to his name. The pediatrician dismissed it as nothing.

On my 30th birthday we were getting ready for my party and a balloon popped by Tye and he had no reaction at all.  Our first thoughts were he was going deaf.  We had him checked out by an audiologist and everything came back normal.  We started speech therapy a few weeks before he turned 2.  At an appointment with a neurologist, we got the shock of our lifetime when he diagnosed Tye with autism.  Our world came crashing down.  All our hopes and dreams for a wonderful life were shattered.

We really didn't know much about autism except from the movie "Rain Man".  This was in 1998.  I don't even think we had a computer at the time. so I spent hours on the phone, making contacts and meeting people.  Some were helpful, some were not.  Some were in it just for the money they could make from a parent desperate to do anything to help their child.  The first year, we spent over $35,000 in therapies to try to help him.  The recommended hours of Applied Behavior Analysis therapy for a child with autism was 40 hours a week.  We could only afford 16.  I got some training to supplement the other hours.

I quit my job as a Physical Therapy Assistant so I could be home to care for Tye and take him to his other therapies - speech, occupational and physical.  My husband worked as much overtime as they allowed to pay for his therapy.  We had to take out a second mortgage to help pay for his therapy.  Everything revolved around Tye and what he needed to help him "recover" from autism.  It put a huge strain on our marriage.

When Tye was 4 years old, my family in NY told me about all the services that were available there. At the time, we lived in Florida.  I convinced my husband to let Tye and I move in with my parents to see if NY was the golden ticket to get our son what he needed.  After 3 years of my husband flying back and forth every couple of weeks, I convinced him to give up his job in law enforcement of 13 years, sell our house, move in with my parents and get a job somewhere in NY.

We tried to make it work in NY for another 4 years, but the strain of living under someone else's roof when you're married with a family, autism, the poor economy, and no jobs made us uproot again.  This time to NC, near Charlotte.  It was a rough start at first.  I didn't hear promising things about schools in NC for kids with autism. It was just kind of blind faith setting us out here with no jobs, but just enough money to be able to buy a house. It took my husband about 18 months to get a steady job with benefits.

It has been extremely challenging with lots of ups and downs.  Right now we have the right combination of good doctors who understand autism and will listen and not look at me like I'm crazy when I mention something.  Plus we have someone who lives nearby that helps us with Tye - this has been a Godsend.

Unfortunately, Tye is nowhere near recovered from his autism.  He turns 15 years old this May.  He is still nonverbal, although he does have some words that a familiar listener would understand. He needs to be watched at all times because he has issues running or wandering or just getting into something he shouldn't.  It is almost like having a typical 2 year old except this one is 5 foot 8 inches and 108 lbs.  He doesn't know how to occupy himself so those are times when he gets into trouble.  He developed seizures when he hit puberty at 13 years old. 

He is extremely handsome - I am biased because I am his Mom.  He smiles all the time and seems genuinely happy.  He loves to swim and taught himself how to swim when he was 3 years old.  He has a long way to go, but has come far in the little baby steps that he has achieved.

The road has been challenging.  We take things day by day, never knowing what to expect from sun up to sundown.  We keep things light to keep our sanity.  Some days we wonder how we will get through it and then other days are not quite as hard.  We try to savor the good moments and not dwell on the bad.  It's the only way to survive and not let the autism "beast" get to us.

Vanessa and I go back many years.  We are kind of related.  Her father and my aunt have been together for over 20 years.  When she asked me if I would be interested in participating in this series, I thought I would give it a try.  My life is crazy so I probably won't be able to make all the postings, but will try my best.  It might offer me a moment of solace and be a good place to let things out.


Read more about the eSpecially Parents Series here

2 comments:

  1. I tried to comment, but it didn't go through. Thank you so much for posting this Paula! My 4 year old son is autistic, and strangely enough has a twin sister. I could see my son in much of what you wrote about yours. I look forward to reading more about your experiences.

    Commenting for Meg.

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  2. I am glad you liked my post. I've never written a blog before. Hopefully I can offer some other moms some insight since I've been dealing with autism for coming on 13 years now. (I can't believe it's been so long!) Time sure goes fast, most of it has been a blur dealing with the many challenges that autism throws your way. Puberty for one was quite an experience! You look at things from different angles as the years go by and your goals change depending on the level your child is at that time. We just take autism one day at a time. Like Forest Gump says pretty much sums up autism for me ... "Life is like a box of chocolates, you never know what you're gonna get."

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