Sunday, July 18, 2010

Raising a child with PDD-NOS


I have blogged before about my special needs daughter. She has had a rough road over her short life at age 3 she was classified as *severely delayed* in ALL the categories of development. After many years of therapy and anxiety she is now classified as *high functioning*. I have been reading a book about raising children with high functioning autism and it has really made me think about the way my daughter sees the world. I think to get a real view of what her life now is like you have to take a step back to the beginning.....

Hailey was born in May of 2004, she was our honeymoon souvenir and although she came into our new marriage fairly quickly she was very much wanted and planned for. While we wanted her desperately my pregnancy with her was horrible. I was extremely sick, to the point of not being able to work, drive, or even sit up straight without being sick. After 8 mths of morning sickness I finally started to feel better, only to deliver her two weeks later at 38 weeks. After a quick and easy labor and delivery there she was, a screaming healthy little girl. But wait I am told she isn't the right color and I am not going to be allowed to hold her, she has to go right to the nursery for observation. I did finally get to hold her for literally a minute before she was whisked away. I did not see my child again for 12 hours. They tell me she didn't suffer any damage from being the "wrong color" but I have my doubts knowing what I know now.

Fast forward a few weeks and we come to find out that the bouncing baby girl that I have brought home from the hospital has colic, no wait make that a allergy to her formula. Once we found out that we were literally poisoning our child with a formula she was allergic to and switched her to a hypo-allergenic one things got mildly better. She stopped screaming non-stop for hours, stopped projectile vomiting every where, and she could poop like a normal child for the first time. But it didn't solve everything she still didn't sleep, she still hated to be touched, and forget about making eye contact and "talking" to us. She wasn't what society sees as a "normal" child. As a first time mother though I didn't see these things as being warning signs, after all I had never done this before I didn't know what a "normal" child was supposed to be doing.

At 18 mths I started to notice that something wasn't right. The few words she had developed were gone, she didn't make eye contact, and she never responded when spoken to not even when we said her name. Following many sleepless nights where I wrestled with my ego I finally called for a appointment to get her evaluated for a delay. They tested her and everything came back at the low end of normal. We were given the option of starting therapy if we wanted but it wasn't necessary after all she was still young and all children develop at different rates. I left that appointment feeling like a over reactive mother.

At 2 1/2 years old I knew in my gut that something was terribly wrong. She still had no functional words, she still didn't know her own name, and the world would disintegrate if we changed her routine even by a small amount. She was extremely anxious in public and couldn't stand to be touched by anyone, even me. The major warning sign to me was that while she couldn't ask for a glass of milk she could repeat line by line a whole cartoon. This phenomenon is called echolalia, where children can repeat everything they hear but can not use the words functionally, and is very common in children with autism. I made the call again and this time the evaluators came to my house and worked with Hailey. I could tell by the looks on their faces that there was something really wrong with my child. When I received the report I understood, my daughter was determined to be severely delayed in every category of development. Talk about a soul wrenching report to read. As a first time parent I am sure you can understand how I felt. I just knew that I had in some way *broken* my child. The evaluator later told me that her case was so serious that he didn't know how the first evaluator missed it. Great thanks for that!

Hailey started undergoing in home therapy the very next week and continued to do so every week until she turned 3 years old. At this point she was diagnosed with PDD-NOS (pervasive developmental delay - Not otherwise Specified). At that point she had to start attending a special needs preschool 3 times a week and then a main stream preschool the rest of the week so that she could learn from her "normal" peers. She has been in therapy for over a year with no improvement when one day on the way home from her special needs preschool she said quite clearly "Mama I can't reach". Let me tell you I almost wreaked the car! She had finally spoken functional speech! It was not all downhill from there but it was the first hurtle.

After many many more therapy sessions we received wonderful news our child no longer qualified for special needs sessions anymore. While this was a wonderful evaluation and what we had been working towards for years it was also very scary for me as a parent. While in a special needs situation my child was normal, and actually most of the time my child was above normal because she was high functioning. But in a mainstream classroom she was going to be anything but normal. Things that other children take for granted can cause my child to have soul shattering anxiety. Who would cater to her anxiety and help her through situations that caused her to panic? Who would go over and over and over the specific directions so that she would understand? The list goes on and on....my child may not need a special needs class anymore but she wasn't ready for a mainstream one either. She was caught somewhere in the middle and I knew she was either going to suffer a extreme setback or she was going to grow in a way that could only happen my forcing her to learn more coping mechanisms. What was I to do? Send her to kindergarten of course, what else could I do?

When dealing with a child with PDD-NOS there are certain coping mechanisms that you as a parent learn. One that I learned really quickly was that if we were going to change her routine we had to tell her about it WELL in advance. For weeks we talked about going to kindergarten, right down to the smallest detail. Then we did several dry runs where she got to experience the school without ever leaving my side. Finally it came time for her first day. I walked through the whole morning routine with her and settled her at her desk. I told her I loved her and walked away. This wasn't her first time away from me and in a classroom, but this was her first time in a new classroom and that is always a situation that can cause a extreme melt down. I am told that those first few weeks she was in her shell, she didn't speak to anyone, didn't play with the other children, didn't make eye contact, and wouldn't answer any questions. Eventually she started get used to her new routine and began to interact with the teacher and the other children. One thing though continued to haunt her for months. The toilet at the school was outside the classroom and was extremely loud. Seriously it made ME flinch and I didn't have sensory issues to deal with. Hailey would sob at night not to make her got back to school the next day because of that toilet. Eventually after going through dry run after dry run the teacher and I finally got her to the point of being able to use the bathroom without sobbing and having nightmares at night. While she was able to function in the mainstream kindergarten many of her issues are still there. She still can not stand to be touched (she has actually never hugged me in her entire life), loud noises and crowded situations cause her to panic, new situations have to be explained to her in detail, she still has major textural issues when eating, and directions have to be extremely specific.

When it came time for the end of the year review I waited on pins and needles. What would the teacher say? Was she ready for first grade? Had she improved enough academically to progress? Was it possible for her to actually thrive in a mainstream classroom? When the day came I was not surprised that the teacher recommended holding her back based on the fact that she was not able to read all 20 of the sight words. After talking with other parents who home schooled their children I came to the conclusion that reading and sight words is more developmentally appropriate for a 6 yr old. So after much discussion we decided to push her through to first grade this fall. Can she do it? Can she keep up in first grade? I honestly don't know, but then I didn't know if she could handle kindergarten and she did it with flying colors.

My child will always be different, she will always be quirky and special, but she will also always be my child and I wouldn't trade a moment of our past. Yes it was hard and yes it was painful but it was our history and it has made us both the people we are today. Many of our family members have expressed surprise that we chose to have more children after seeing her issues, after all she was not a easy child. I say how can you look at that sweet face and not want more children just like her?

6 comments on "Raising a child with PDD-NOS"

bre on July 19, 2010 at 10:39 AM said...

wow amy, that was beautiful, thank you for sharing

Sweet Tater on July 19, 2010 at 11:01 AM said...

I knew some of this, but I had no idea of all of this. God bless you all, and hopefully she'll do well in 1st grade, show everyone what she's really capable of. :)

Nancy on April 22, 2011 at 6:07 AM said...

amy, thank you for sharing your story. it really comforted me today. i also have a daughter who is just diagnose with PDD and she is still 1 yr and 8 months and our first child. accepting her condition is really stressful on my part since i'm now pregnant with our second baby. but your story gave me enlightenment and more courage to help her and understand my daughter's condition. God bless you and your daughter.

Kim on September 7, 2011 at 9:21 PM said...

I just came across this post, I know it's over a year later, but I was wondering what book it was that you read? my daughter was diagnosed with PDD, and everyone just seems to be throwing it off, like it's nothing...

-mimi- on September 7, 2011 at 10:23 PM said...

I want to thank everyone for their comments :) Kim the book is called Children with High Functioning Autism; A Parents guide.

http://www.amazon.com/Children-High-Functioning-Autism-Parents-Guide/dp/1593634021/ref=sr_1_1?s=books&ie=UTF8&qid=1315448529&sr=1-1

Jess on June 16, 2013 at 11:44 AM said...

Amy, thank you for sharing this. My 3 year old daughter was just diagnosed with PDD. I had her evaluated at 20 months, and she just barely passed, enough to disqualify for services. Like you, I felt like an over reactive mother. It was a relief to finally get the diagnosis after advocating for her for years, to know she'll finally get the support she needs. Your words have given me strength on this lonely road. Thank you.

 

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