The Parental Challenge

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A time of frustration becomes a rewarding journey while caring for a special needs child.

I was 24 years old and married when I was pregnant with Jake. I had a handful of nieces and nephews at the time and was thrilled to become a mother.  But I was oblivious to the possibility that parenting could be challenging in more ways than a typical temper tantrum. I thought of nothing but all of the zoos, museums and playgrounds Jake and I could visit. And that’s what I did – I raised Jake like he didn’t have special needs.

Jake, who’s now 22, was born with a triple chromosomal translocation, where 3 of the 46 chromosomes were broken; two reattached completely and the third was partially deleted, missing some genetic material, which caused Jake to have moderate mental retardation and strabismus (a condition in which the eyes aren’t properly aligned). When he was young I was unaware that the strabismus was related to a chromosomal deletion.

Jake had his first pair of glasses at nine months and corrective surgery (for the strabismus) at age 2. Keeping glasses on a young boy was nothing compared to getting him to wear an eye patch and sitting through lengthy ophthalmology appointments.

The first five years were challenging. My marriage ended in divorce and I found myself a single mom with a special needs child, unequipped with the knowledge for what my future held. Statistically, the divorce rate for parents of children with special needs is higher than 80 percent; among my close friends it’s closer to 100 percent. It’s a combination of the initial shock of the diagnosis and how differently the parents go forward and deal with the news. Some parents become less involved and become workaholics; others become obsessed with the diagnosis. I found a happy medium.

Luckily Jake and I lived in downtown Chicago and I was able to exercise daily to ease the pain, stress and sometimes self-pity. I had a baby bike seat, a baby jogger, backpack and became a seasoned runner. Jake was also very active and almost daily a stranger would comment, “You have your hands full.”

We attended the mom and tots class at the local park district, but felt out of place because Jake was extremely uncooperative. What was meant to be time for bonding became an unwelcome chore. Jake’s development was delayed, but his pediatrician led me to believe it was okay because he was within range (albeit at the opposite end). Jake’s speech was delayed and the lack of verbal communication morphed into physical interaction – not the good kind.

Jake attended a local, pretentious preschool (no longer operating). He had many issues, the worst one being he pulled other kids’ hair. He didn’t just pull, but yanked very hard. He didn’t fit in, socially or developmentally, but these were issues he was going to outgrow – or so I thought.

One of the teachers worked with him individually, in vain, to try to help him be more successful. Then one day, an incident gave the CEO a reason to boot him. The kids were going swimming and sitting on the side of the pool, waiting for the instructors. But Jake impatiently jumped in the pool, almost drowned, became a liability and was asked to leave. From there he went to a preschool in the beautiful Fourth Presbyterian Church on Michigan Avenue by Water Tower Place. The staff was more forgiving and accepting of Jake and his inability to fit in. All the while, my life was becoming more and more tumultuous and unpredictable,  like my world was falling apart and spinning out of control. I cried daily and sought support from my loving mother and sisters.

The next chapter was post-preschool and deciding where Jake would go.  Still in denial that he might have something that needed to be dealt with, I took him to the private school in Lincoln Park, where I was teaching for the pre-admission play date for junior kindergarten. A friend at the school asked me to stop by her office. I’ll never forget the day; it was a day of reckoning.  She said, “Connie, you’re part of the family here — we’d love to have your son here but we can’t accommodate him – he needs special attention.” Tears fell freely and didn’t stop. I then had to acknowledge what I feared and move forward. I greatly admired and respected this woman and knew she had spoken the truth.  It was time to face reality.

The next steps were taken numbly and without enthusiasm. Jake went to see a child psychologist who delivered the same message – he needed special education. She suggested I move to Oak Park, where there was an excellent program for students with special needs. She also recommended Jake get tested for Fragile X Syndrome. More doom and gloom, but I wanted answers.

Tests were done and the rare chromosomal deletion was disclosed. This was an affirmation that my son was going to be different and wasn’t going to college, wasn’t going to get married or be a dad. Secretly I despised my sisters for having ‘normal’ children. Why was I the only child of seven with a child who was ‘different?’

We moved to Oak Park and the school system was phenomenal. Jake’s kindergarten teacher suggested he take swimming lessons, which launched him to Special Olympics. My fondest memory of the Special Olympics was the look of confidence on Jake’s face when he won an event. I’m lucky enough to still have the photos and his vast collection of medals. Special Olympics gave Jake self-esteem and confidence – two things I couldn’t give him. We stayed in Oak Park until Jake graduated from middle school. Jake attended and graduated high school in Valparaiso, Indiana.

Jake now lives at Misericordia, or what I like to call heaven on earth. According to their website, “Misericordia offers a community of care that maximizes potential for persons with mild to profound developmental disabilities, many of whom are also physically challenged. By serving society’s most vulnerable citizens, Misericordia also serves the families who want the best for them, yet cannot provide it at home.” Jake lives in a CILA (Community Integrated Living Arrangement) with five roommates and one staff member. During the week he works on and off campus. He has a girlfriend and lives quite a normal life. Most importantly, though, is that he’s happy. It no longer matters that he didn’t go to college or he’s not going to produce grandchildren. I no longer have any worries. As I see it, Jake is in God’s hands and always has been.

I feel like the luckiest person on earth – for both being a mother to Jake and for the difference he’s made in other people’s lives. He’s one in a million. I look back now and reflect often on Jake’s history: Would I change a thing? No! I still cry when I tell his story and am crying right now – it’s a beautiful story and I want to share it with everyone.

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About Constance Dec

A woman of many talents, Constance Dec is a regular contributor to TCW editorially and visually. She covers a variety of topics including dining, health and personality profiles. Ms. Dec also has a passion for photography and works on a number of projects for TCW.