Jackie’s Story: Growing Up with PDD

By Kandace Wright

**Originally published in the Fall 2007 Special Needs issue of The Journal of API

Jackie
Jackie

Jackie informed me yesterday that when she has her own children she will never tell them “no.” Never. I smiled and wished her luck with that. Then, today after school, she informed me that she thinks she might sometimes need to tell them “no.” Sometimes.

Jackie is a healthy, mostly happy 11-year-old child with special needs. What makes her unique is that she has pervasive developmental disorder. She has some autistic features mixed with a possible mood disorder, though some days I wonder if her mood swings are more related to her approaching coming-of-age. I do not believe there can be anything more emotional that impending menstrual cycles for a young pre-teen. Sigh. When did I become the mother of a pre-teen?

About PDD

The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before three years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings; and repetitive body movements or behavior patterns.

Autism is the most characteristic and best-studied form of PDD. Other types of PDD include Asperger’s syndrome (a high-functioning form of autism in children who generally have high IQs), Childhood disintegrative disorder (in which a child may develop fairly normally until 18 to 36 months and then begin to regress, especially in speech and social interaction), and Rett’s syndrome (a neurodevelopmental disorder found almost exclusively in females and characterized by normal early development followed by loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, gut-associated lymphoid tissue abnormalities, seizures, and mental retardation).

Children with PDD vary widely in abilities, intelligence, and behaviors. Some children don’t speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.

Practicing Attachment Parenting has enabled us to be more responsive and more intuitive to Jackie’s needs. My husband and I can often sense what she needs from us and her environment, which is key to our preventing meltdowns and struggles.

We also feel strongly that we help her by having a support system for us. We rely on a support team including family, friends, and people from the school system who work with Jackie. Sometimes we need respite care, an extra set of hands, or a parents’ night out. Our sitters are well trained to work with children like Jackie, and all of our kids look forward to the special playtime. We enjoy coming home relaxed and rejuvenated, and know we are in a better place to cope with any challenges that might arise.

Different is OK

One of the hardest challenges with raising a special needs child is trying to keep people, including us as her parents, from attempting to force her into being a “typical” child. Jackie is different. She will always be different, and I celebrate that difference.

That said, it’s not all roses. There are some thorns. We have struggled with defining what Jackie needs in her school environment. We have also struggled with therapists and psychiatrists who have tried a one-size-fits-all approach to Jackie’s challenges, including the use of medications.

A Trial of Medication

We resisted using any medications for a long time, despite the pressures. When we had our fourth child, things really bottomed out for her. She was in such emotional pain. We decided it was unfair to not at least investigate and try medications. We started out with high hopes, but soon realized that our daughter had become a proverbial guinea pig.

We tried half a dozen medications over the course of 18 months. I know some children receive relief from medication, but Jackie never did. In fact, they had a negative effect on her system and she seemed even worse. It was heartbreaking. We ended the experiment and weaned her off all medication.

Jackie hit a new low while weaning from the medications. Then, after a month, she seemed herself again. She became more in control of her emotions and behaviors, and her humor returned (something I hadn’t quite realized how much I’d missed). She seemed settled. I cannot quite explain it, but she just seemed more like the daughter that we knew and loved – quirks and all.

Two Steps Forward, One Step Back

It’s been about six months, and Jackie continues to improve. She takes two steps forward, then one back (sometimes three back), and then she makes progress again. She was recently able to transition from the special needs school bus to the regular school bus, which was an important milestone for her.

No matter how hard we attempt to prepare her to be confident with her special needs, as she gets older there will always be the pull to be more like a “typical” children. She will always want to be “normal.” We embrace Jackie as she is. We have taught all of our children that we are each unique, and we encourage them to be accepting of others, even those who face challenges that make them difficult to deal with.

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