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Chantele Leatherwood's Story > Storyteller Feature

Featuring: Chantele Leatherwood
Written by: Tamar Burris
 

"Raising a Child with Rett Syndrome" 


Comments: 1 Published on: Apr 30, 2009 Views: 54,394

Category: Growing Up

 

“When I found out Havana had Rett Syndrome, I vowed never to be ‘the Rett Syndrome family,’” says Chantele Leatherwood. “Her life isn’t over. My life isn’t over. I was determined we’d make the goals in our life a reality. I never saw a reason why we couldn’t be a whole family.”

 

Keith and Chantele first realized there was something wrong with their daughter just after they moved to Northern California. Havana was barely 17 months old and Chantele was seven months pregnant with their second child, Laird. Before the move, Havana was every inch your typical baby. She could feed herself. She said mommy and daddy. She got into things she wasn’t supposed to. Now, they noticed that something had changed in their baby girl. “Within the first week of unpacking Havana’s stuff I realized she hadn’t even touched her toys since we’d moved. Her toys had actually accumulated dust!”

 

Chantele clearly remembers the day they sought help from specialists. She held a bowl of carob raisins in her lap and Havana couldn’t pick them up. “She wanted to, she was trying to, but she couldn’t hold them. She kept fumbling around.” Chantele moved the bowl out of her lap and placed it nearby when her daughter walked away. When Havana came back she looked at Chantele’s empty lap, sort of assessing everything right in front of her, and turned around. She didn’t even look at the bowl sitting just a foot or so away. “She seemed to have difficulty calculating the movement. It didn’t make sense to her. It was the moment she gave up—or so we thought. We thought, ‘She doesn’t want to do this anymore. She doesn’t want to look at her books. She doesn’t want to use her hands to eat. She just doesn’t want to do any of it.’”


“There’s a lot that you’ll find you’ll do for someone you love. She didn’t sleep that year. Some nights she’d be awake laughing, cracking up like she was the only one at a party. When she wasn’t laughing she was crying, hysterically.”

 

“We drove back down to Ventura where her old pediatrician was. He said she was probably autistic.” Down south, Chantele’s mother made a call to some doctors who specialized in autism. After meeting with them, one of the specialists said that Havana was severely autistic and not to expect a whole lot from her. “It was so painful. The way it was said, as if she wasn’t our child. As if she wasn’t THE MOST important thing in our life. Havana was just a number to this woman.”

 

Not only was Havana’s behavior changed, but her physical condition was changing too. From the time she was about one-and-a-half until she was two-and-a-half, Havana threw up. A LOT. (The Leatherwoods now know that it was reflux, a condition that causes any food you eat to go up rather than down.) Every meal, from chicken to baby food, had to be pureed and squeezed out of a dropper into the back of Havana’s throat so she could swallow it. “There’s a lot that you’ll find you’ll do for someone you love. She didn’t sleep that year. Some nights she’d be awake laughing, cracking up like she was the only one at a party. Keith and I took turns every other night with Havana. When she wasn’t laughing she was crying, hysterically. If she wasn’t crying or laughing, she was just awake. We were always with her through the night but it couldn’t be the same parent, it was just too much.”

 

Havana was subjected to numerous blood tests to determine whether she had autism or some other condition. So many, in fact, that she bruised from the amount of blood being drawn. “One day the doctor came up with a list of other things he wanted to try. We said ‘No, no more blood tests. We’re taking a break from all of it.’ For about five months we took a break. To find out what condition she had would be for us, not for her. We needed to take care of her needs first.” Around that time somebody mentioned Rett Syndrome to Chantele. Rett is a neurological disorder often misdiagnosed as autism and is almost always seen in girls. For the first time ever, the medical community had a blood test that could determine whether a person had Rett. “We were terrified. It’s hard to look back and think that it was scary, but it was! When we saw pictures of girls with Rett, they weren’t ambulatory. They were fed through G-tubes in their stomachs. Granted, these were the worst-case scenarios, but I wasn’t sure it was something I could do. It seemed past my line as a parent to watch my child have to go through this. But, Keith and I had a feeling that if any test were going to be done, this is the one we should do.”

 

About a month later, a letter came from Stanford. Getting out her giant dictionary to sift through all the medical jargon, Chantele learned that her daughter did indeed have Rett Syndrome. Keith was away on work and would be unreachable for three days. Havana’s whole team was set to arrive for their monthly meeting in a few minutes. For the moment, Chantele was alone with the news. And, while they were good at what they did for Havana, the approaching group of people was not who she wanted to lean on. “I took a walk, feeling stunned. I don’t even think I’d cried yet. Then, I walked in and sat down with this circle of folks. I’m not sure if I said more than three words at that meeting! I sat through the meeting and they left. I didn’t tell them. I didn’t know how to tell them, ‘It’s not that Havana won’t clap for the chocolate chip, it’s that she can’t! It’s not that she doesn’t want to talk, it’s that she can’t!’ I felt extremely guilty, like we’d been pushing and pushing her to do something she couldn’t have done no matter how hard she tried!” 

 

In some ways, Keith and Chantele feel like it was easier because Havana was their eldest. Raising her, they knew nothing different. “We kept feeding her after she threw up. We adapted her therapies more for somebody with Rett. She lost the ability to hold a bottle and we would wrap her hands around the bottle. The doctors wanted her to have a G-tube because she started to drop on the growth scale. But, we also understood that a lot of girls like Havana at that age had great difficulty walking and Havana was running! A G-tube would slow her down. We wanted to perpetuate the good things we could. So we didn’t go for the tube.”

 

When Havana was three, she began having seizures. Laird named them SDs—sudden disturbances. Every four months or so, Havana had a seizure. It went on for about year, and then stopped for a few years. About three years ago, they began again. “She’d just go down like a tree. Even if you were five feet from her, even if you were right next to her, you sometimes couldn’t catch her. It was that fast.” Trying to be proactive, the Leatherwoods got a helmet for Havana. Then, one time when she was not wearing it, they found her with a bleeding head. She’d obviously gone down. And, she was starting to have about 30 seizures a day! She’d go rigid and just fall without warning. At that point, her parents decided to try anti-seizure medication. “It was a tough decision. She has so many abilities that other girls with Rett don’t have. It never really felt right to medicate her because she has so many issues that just won’t be solved with medication. And, medicating can be like opening a can of worms. There are side effects and you have to medicate for those, and then medicate for the side effects of those side effects, and it goes on and on.”

 

While the new meds seemed like a miracle for the first week, they soon lost their luster. “For about a month she was so incredibly lethargic. The SDs started up again and she would just lie around, drooling. All she’d do was lay on one side, then get flipped to the other.” The doctors suggested they up the meds, which they did. But, Havana only got even more lethargic. “Her eyes were half-mast. It was exactly as we feared!” So, Keith and Chantele began weaning their daughter off the medication. “I cried a lot when we first decided to medicate her. It felt like we were giving up. Now, I’m glad we did it. That first week was a very special week for us. Plus, now we know. I never have to think about ‘Should we have…’ because we did. And, it didn’t work.”

 

When Havana first started school, the family grappled with where to send her. Chantele educated herself about what Havana’s needs would be and what could be provided for her, by the state and others. “I’d always told myself that for any child I had, their schooling would be whatever kind of school they’d benefit from the most. When Havana was about three, she wasn’t in school yet. One day I was out getting the mail and met up with a little neighbor boy down the road. He said, “Oh, you’re the woman with the little sick girl.’ I thought, ‘No, she’s not sick. She doesn’t have a fever or anything. I wonder why he thought that?’ Then, it dawned on me. RETT. That’s why they think she’s sick! That’s when I decided she’d go to school with her peers. She’s NOT going to be the little sick girl who lives down the road.”

 

Because Havana did have a lot of special needs—she lost fine motor skills with her hands and mouth, she couldn’t control her legs to walk her in the direction she needed to go, etc.—Chantele wasn’t going to just drop her off at any preschool. So, they sent her to a school for special children. Initially against putting her daughter in a “low functioning” class for children with extreme special needs because most kids in there weren’t even ambulatory, Chantele was eventually persuaded that it would be the best way to go. As it turns out, it was. “There was a huge learning process. I didn’t know the creative techniques for teaching Havana and neither did her teachers. She was so different than anybody they’d ever had. We all learned together. Havana had challenges. But, it didn’t mean that she couldn’t understand.”

 

 


“RETT. That’s why they think she’s sick! That’s when I decided she’d go to school with her peers. She’s NOT going to be the little sick girl who lives down the road.”
 

 

In fact, it’s been clearly shown that Havana CAN understand. And, she wants to communicate. She’s been mainstreamed in public school with a one-on-one aide since kindergarten, where the teachers and kids make sure she is a part of their community. “Just like any 11 year old, she has needs. You’re thirsty, you’re hungry, or you want to go out, all that. I really can’t read her body language. So, we have programmed ‘talking’ buttons she can push to let us know. Sometimes she’ll stare at it when she can’t touch it. Or she’ll walk back into it and push it with her back. Havana really, really likes to communicate. She has to try harder than anybody I know to do it, and she still does it.”

 

Havana has a talking box called a sequencer that she brings to school with her. Every morning a family member sends her with recordings on it. The box says things like “I had pancakes for breakfast! Or, isn’t it a beautiful day today?” And Havana can push the button on the box to talk with her friends. At the end of the day, Havana’s sent home with new recordings from her teacher that she can play back for her parents. “She has a few minutes worth of dialogue to share with the kids at school every day. And she’ll hit it. Some days are harder than others, but she hits it. I think it connects her with her peers. Now they realize that Havana enjoys communicating with them, and communicating with them in a way that they understand. She comes home with the box and shares with me. I learn more about her day than I do from the other kids! Little details that tell me whether to get her to bed early that night, or to keep her up because she slept all day at school.”


Although Havana can talk, she only does so once in a great while—about four times a year due to the neurological issues associated with Rett. So, the people around her truly treasure the words that come out of her mouth. “The times she does verbally talk it’s like a recharge button for the whole family. It’s like she’s practicing in the dark in front of a mirror! Because when she does talk, it’s pronounced so perfectly. If you think you heard it, you heard it. And if she said it, she meant it.” One of the most important things for the family has been to help Havana communicate. “Havana’s become our rock in a way. Often, I feel like, Havana can do this, so I must be able to, too! She doesn’t have any other choice and she’s doing it. I think about how she has to wait. If she’s thirsty, she has to wait until somebody figures that out. She’s brought a lot of strength to our family.”

 

Since her diagnosis, Havana’s been on a fairly steady, upward trajectory. She has gotten stronger and more grounded over the years, as has her family. Havana holds a special place in the hearts of those around her—particularly for Keith, Chantele, and their three other children, Laird, Zaca, and Tacia. “Over and over again, she’s just become the backbone of the family. If she can do it, we can do it. She’s brought so much love to the surface for us and gives us this awareness that everyone has challenges. She also helps you not take for granted all the wonderful abilities we have. When I feel impatient with Havana I think, ‘How dare I!’ She is the one who has to wait to be fed, to get a drink, to have her diaper changed. I have to find the patience because she does every day. Our children are very patient because they’ve had to be and I can’t really see that being a negative acquired skill in life.”

 

Being Havana’s mom has also given Chantele a special kind of voice, be it verbal or in writing. “She gives you this strength that’s inside of you. When it needs to come out, it comes out. Being her advocate has brought a great deal of confidence into my life, something I didn’t have before her. She’s given me the strength to speak up and feel sure that we, Keith and I, know her better than anyone. I can speak up to doctors and school systems, therapists when their services are inadequate or their methods aren’t geared to Havana and her special needs. Really, the list goes on. She’s encouraged me to communicate healthfully and directly. She’s brought things out in us that might not have ever unfolded and I’m grateful for that.”

 

And, Havana is grateful, too. Recently, Chantele took her to test out a new computer program in Oakland. It reads eyes, which for Havana is her most reliable form of communication. If you look at a particular object on the computer long enough it will activate in some way, if it is a movie it will play, if it is a photograph it will talk, and so forth. Before their visit, Chantele sent down pictures of the family that were put into the program. Havana was asked to identify her father and her older brother, which she did with her eyes. Then, the trainer asked her an important question. Who do you love the most? She kept activating the picture of Chantele. “When your child is looking at you and telling you they love you, you never would guess it would be through a computer. But still! She told me she loved me!”

 

Keith and Chantele are proud of how far their little girl has come. And, they look forward to seeing who she grows into, despite challenges that lie ahead. “There’s a study where they’ve been able to reverse Rett in young mice. I definitely have some mixed feelings about the experiments. But, I’ve thought about it. Should anything ever be approved, would I want her to be a typical child? Who would that be? I’m not sure I’d want to risk changing the wonderful person that she is. To do some kind of reversal, we could lose everything wonderful that way. What if it didn’t work? It feels good to reestablish that Havana is loved for who she is, just the way she is.”

 

For any of us really, what could be better than that?

 

For more information about Rett Syndrome visit (http://www.rettsyndrome.org)

 

 

Thank you Chantele, for sharing your Story with us.


~~~

Our Stories and pictures are the sole copyright of their Authors and may not be reprinted or used without their permission.
© 2009 by Tamar Burris Story of My Life®



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Member Since
Aug 2007
Gina Pertonelli said:
posted on May 01, 2009
Havana

She's sooooooooo cute.....