Child Of The Month

Life with Cheyenne
by Ellen Doxtator
Newmarket, Ontario, Canada

Just recently, I was watching T.V. with my four year old son Samuel. At the end of the program they advertised the Kids Helpline. Samuel looked at me and said "We should call that number, Mommy." I asked him why and he said, "so we can get help for Cheyenne" (his 6-year old sister with Idic15). Curiously, I asked him how he thought they would help Cheyenne. Without hesitation he said, "Well they could help her learn to talk properly, color without scribbling, look at people when they talk to her, and walk so her legs don’t turn in like this", and he demonstrated how Cheyenne walks. I was amazed at the accuracy of his observation skills and how such a little guy could be more perceptive than some of the doctors we have encountered. How I wish it could be as easy as just calling the Kids Helpline to get help for Cheyenne - a sort of one-stop-shopping network for kids with special needs.

Life with Cheyenne just hasn’t been that simple or easy. But, like Samuel, I have found that focusing on what Cheyenne needs has helped us to surpass the medical profession’s expectations of Cheyenne. I guess we are in fact Cheyenne’s personal helpline.Of course, when Cheyenne was born we had no idea of the multiple problems she would face. She was such a beautiful looking baby with a head full of black hair, rosy lips and a natural tan. She looked just like how I imagined a Cheyenne would look. She was a perfect baby girl who never cried and slept all the time. Looking back this was our first indication that something was wrong. She had no ability to suck and no hunger instinct. She had loose hips and was placed in the special nursery because her heartbeat was slow and her temperature was low. She spent her first 3 days there. We were so relieved when she finally came out. Feeding was still a huge issue, and Cheyenne still couldn’t feed when she was released from hospital at four days old.

When we got her home, I tried everything - breast-feeding, tube feeding, etc. with little success. We finally took her to the emergency room but had to wait until the next day before we saw a pediatrician. Our pediatrician monitored Cheyenne daily, and we did everything just to keep Cheyenne awake. I fed her every hour and a half, twenty four hours a day. Because of the feeding problems, we discovered other things. Cheyenne was slow to sit up, crawl, or roll over. She was incredibly floppy, just like a rag doll. But of course, to everyone else she was a perfect baby, sleeping lots, rarely crying and loving to be held. Other people did not realize some of the difficulties we faced, like Cheyenne’s inability to feel pain or her constant screaming and crying throughout the night for the first four years of her life. I always felt like just when we were starting to deal with one diagnosis, something else would be discovered. We still didn’t have a diagnosis for Cheyenne. In fact we didn’t get one until she was 3. But she always demonstrated her will to succeed. One of her favorite songs is "Zippity do dah". Cheyenne has changed the words and it is how she approaches life. She sings "Zippity do da, Zippity day, My oh my what a wonderful day, plenty of sunshine, get out of my way, Zippity do da, Zippity day!

At eighteen months we were just starting to realize the severity of what we were dealing with when I became pregnant with Cheyenne’s brother Samuel. Samuel turned out to be a motivating force in Cheyenne’s life. For Samuel, every skill Cheyenne struggled with came easy. And that made his sister mad. Samuel helped his sister do things like walk and talk faster. Even though at times Cheyenne was quite jealous of him, pulling his hair and hitting him because she couldn’t express herself yet. Of course they have a typical sibling relationship. Sometimes having fun together and sometimes fighting over silly things. And of course, always sharing illnesses. Samuel just recently broke out in chicken pox so we are awaiting Cheyenne’s spots. When I told her I didn’t see any spots yet, she said "And no rectangles or squares either".

Two of the most difficult things about dealing with a child with special needs are the never ending trail of paperwork and dealing with all the professionals. When I think back, some of the professionals have been excellent and able to provide us with the support and information we needed. Others have not. Some focus on all the negatives: Cheyenne won’t be able to walk, talk or see. At first, as parents, we believed everything that the professionals told us. But as time passed, we learned to ignore their predictions and expect the same of Cheyenne as we did from her brother. She may take longer to learn a particular skill but she showed us never to underestimate her stubbornness and determination. I remember one visit to a doctor’s office where the doctor was challenging Cheyenne to do something she didn’t want to do. Without hesitation, Cheyenne got up, walked to the door to leave, turned around and said "I am NOT coming back here again. GOODBYE!” During another visit to a hospital where Cheyenne had a test to measure her nerve responses, Cheyenne fought us (2 doctors, 2 nurses, and myself) like crazy. The doctor said "She sure is strong" and I said "That’s kind of a contradiction considering she has such low muscle tone". The nurse said Cheyenne’s stubbornness and determination would take her far in life. So far it has. She continues to surpass everyone’s expectations of her, and we hope she won’t lose her spirit along the way.

We never know ourselves what to expect. At home she chatters non-stop from the time she gets up until she goes to bed. At school, she barely talks at all and tries to convince them of how little she knows. Yesterday we got a note home from the school saying Cheyenne often misinterprets what adults are saying or the tone they are using and will put her hand over her mouth and close up. I have never seen her do this but the teacher noted, once she closes up, it is very difficult to get her to talk. I couldn’t help but laugh, that is part of dealing with living with Cheyenne. At home she sometimes says things that I would never expect. Like the other night when at 10:00 p.m. she got our of bed and I told her to go back to bed. She said "Who cares, Mommy? Who cares?" When I said "I care because you need your sleep", she replied "Well that’s your business Mommy".

Cheyenne continues to make progress in all areas. She walks independently (with supervision), her speech and vocabulary continue to improve and her comprehension and understanding are developing. Physically, she finds any academic work using her fine motor skills difficult, although she has great flexibility -like last night when she was playing pat-a-cake with her feet! She still tends to prefer interacting with adults rather than her peers but does engage in some parallel play. She has a great sense of humor and loves listening to music and watching Arthur. She and Samuel are typical siblings, playing, fighting, and arguing together. I credit a lot of her progress to the home therapy program she is involved with. Although it takes lots of time and effort from our family and the caregivers who come into our home, it has been worth it. As long as Cheyenne continues to progress and have fun, we will continue to do everything we can to help her succeed.

To the outside world, Cheyenne’s life will always be filled with can’ts and won’ts. Recently we were told within 5 minutes of a professional meeting that Cheyenne won’t be able to use a computer. Yet Cheyenne is using a computer at school every day and quite enjoys it. If we focused on these can’ts and won’ts, we would never expect anything of Cheyenne. Somehow we have to keep our eyes and hearts open to expect that we can receive help for Cheyenne. Just like Cheyenne’s brother did. I hope that as Samuel grows older, he will still have the same love and concern for his sister as he did when he suggested we call the Kids Helpline. I hope he grows to appreciate the strength of character it takes to be Cheyenne. And maybe someday there will be a Kids Helpline where families could get the support they need. And maybe there would be someone on the other end who could appreciate a kid like Cheyenne, and just maybe they would take the time to listen.

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