Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Christopher (18), Cerebral Palsy, Shelby County


"It’s overwhelming to go to the school, and feel like you have to get down on your hands and knees and beg for services you know your children should have. "

  • A Parent's Perspective
  • Posted on 12/14/2012

 

My son’s name is Christopher, but everyone knows him as Cricket. He and his twin brother, John, were born premature. I was in labor for three days, while they tried to stop my contractions. An ultrasound was done while I was in labor and they predicted that both babies would be significantly larger than they were at birth. They were low birth-weight babies. Cricket weighed 2 pounds, 2 ounces. The nurses in the NICU said that Christopher William was too long of a name for such a little baby. We came up with the nickname Cricket, because he was so tiny and because I had a friend named Cricket when I was young.

He and John spent a long time in the NICU. Cricket stayed up to the time he would have been due, approximately two months. John stayed about a month and was able to come home around Christmas. Cricket couldn’t breathe on his own and was on the ventilator for a long time. Shortly after birth, Cricket had an Intraventricular Hemorrhage. It was my first realization that we were going to have problems. I remember that at about three or four o’clock in the morning, the doctors and nurses came into my room at the hospital and turned on the lights. I knew something bad had happened and possibly that one or both of them had died. It turned out that Cricket had the “bleed” and needed to have a transfusion. Even after the transfusion, his skin color was very grey, from significant oxygen loss, which caused his Cerebral Palsy.

Both of the boys had what is called retinopathy of prematurity; they had detached retinas. John’s actually self-corrected. They even predicted when he was little that he would need glasses, but he is great. Christopher’s ROP just got continually worse, to the point where he needed surgery. The bad thing was that at the time they were going to do his surgery, the bleed in his brain had caused hydrocephalus. He had to have a shunt. We had to go with the shunt surgery first, because it was critical. So we missed the window of opportunity for the eye surgery. When the eye surgeries were done later, they just did not work as well. He developed scar tissue in his eyes which further detached the retinas, resulting in blindness. Due to the severity of his diagnoses, he is dependent on caregivers for all his needs.

He was able to say some things when he was young, and every now and then, he will say, “Yeah,” or something that kind of sounds like, “Hi”. Other than that, he vocalizes but he doesn’t verbalize. He has an intellectual disability but what stage that would be, that could be anybody’s guess. When a psychological test is done, it’s just a stab in the dark. It can depend on what kind of mood he’s in when we go to see the doctor. We know that he has very good hearing, and that his receptive language skills seem to be great. He can use body language to express his needs to his caregivers.

The number one challenge with Cricket has always been health. We have spent so much time at LeBonheur Children’s Medical Center. The good thing about LeBohneur is that they have really grown and changed since we first started going there. In the beginning it was a bad experience for us. You could spend huge amounts of time waiting down in the ER. It was not as family-friendly as it is now. Just trying to keep Cricket healthy has been a real struggle! I am so thankful for our wonderful pediatrician and his staff, and several of the specialists we see. I don’t know how we would have managed without such wonderful care, as well as the staff at LeBonheur.

One of the reasons why I wanted to be a part of the Partners in Policymaking program, is because of problems that we have encountered in dealing with the school system. It’s so tragic to me because I think families face so much hardship with their children anyway, especially if they have health-related issues in addition to the disabilities. I think it’s overwhelming to go to the school, and I feel like you have to get down on your hands and knees and beg for services you know your children should have. Sometimes you dread an upcoming IEP meeting. When it comes to related services, like PT, OT and Speech, I often feel that he’s not receiving what he needs. Therapists have suggested that we seek services through private insurance, but I know they would be denied since we have OT and PT listed in his IEP, and the school should be providing those services. It can be frustrating for families.

Cricket is in a special education classroom. It is a CDC class called Adaptive Functional Skills. It’s a small class in a nice, large classroom. The teacher has assistants, a nurse and therapists who interact with all the children in his class. He will be in school until he is 22. After that, I have no idea. Honestly, I really don’t. I don’t want him to stay at home all day. Thankfully we do have personal assistants through MidSouth Arc. We have a great guy who’s doing it right now. He’s going to be a SPED teacher. I don’t know what I’m going to do when he graduates this fall. I think it would make me nervous to have Cricket some place while I was at work, if I knew he wasn’t being supervised well.

Christopher does bring so much joy to our lives! He’s just so amazing. He really has an incredible spirit. Unless he feels bad, when he wakes up everyday he is so happy! We always say it’s like the angels are just telling him jokes. He has the sweetest smile, and he has the greatest laugh. He loves music and he’s funny. When people make jokes, he laughs, so he knows what you’re saying. He’s got such a sunshine-y disposition, and to me, he’s just a really big inspiration! I can’t imagine what it would be like to wake up every day, and you can’t dress yourself, you can’t pick out what you want to wear, you can’t pick out what you want to eat—basically you’re being fed whatever. I’m sure that would be difficult! And for him, I’m sure, having those therapies done is like torture, but he needs it. He’s inspired me to be able to do the things I’ve been able to do and may not have imagined myself doing! To me he’s just an amazing person and I am so happy to have both of my wonderful sons.

 

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