As he gets older, he does ask more questions about the medicine and the procedures. We tell him what’s going to happen, but we don’t talk a lot about it. He wanted some really specific details, and we found that that would just get him more upset. So, we give him an overview, but we emphasize that he’s not going to be in pain during the surgery, and that he’ll be asleep, and he’ll have medicine and so forth. Also we’d have him bring his favorite stuffed animal or blanket with him, which helped.
Mother
We never hide anything from her
I think that including Stephanie in all discussions about her treatment options has helped her. We never tried to hide anything from her. She is unique because in spite of her physical disability, she has no cognitive issues. This helps her in trying to understand her disability and allows her to discuss her treatments with her doctors. Another way we helped her was to treat her no differently than our other children. She was the baby sister to my other children, no more, no less. Her CP is just a matter of fact and is and is treated as such. We continue to do all the things we always have done. We just do them with a wheelchair.
Father
You can’t play because of that
We never have crossed paths with bullies yet. I know we will. I mean there are some nasty kids that say, “You can’t play because of that.” I don’t know if it bothers him. It might, but I don’t know. He doesn’t tell me. If there is, his sister takes care of it.
He asked me, “Well, what do I say if they ask what is wrong with me?”
I said to him, “Well, what is wrong with you?” He said, “Well, nothing.”
“What if they ask you about the braces, what do you say?”
He said, “They help me walk better.” We just try to be truthful with people about the situation.
Mother
“Cute” grows up
My son has special needs and everybody thinks he’s cute. So people ask “why are you so tough with him?” I say, I treat him like a normal child. I treat him like my other children. I always tell them that “cute” grows up. Once you’ve got a grown up cute kid and you let him do what he wants, then you can’t handle him. And they’ve taken over, and your life is really a wreck. So I am very adamant about his discipline, about him paying attention and listening. So, he may get angry at times, but he’s easier to take places. I can take him out to eat now, whereas before food would go flying. So it’s a work in progress. Every child with multiple disabilities is going to be a work in progress. Treat him or her like a normal kid. Don’t treat him or her like a handicapped or special needs child.
Mother
Her body stiffens, and that’s how she deals with stress, I think. When she tones a lot, she tends to reflux, so with Kayla we tell her everything ahead of time. I think it’s better for her. I don’t like to just bring her somewhere and just show up and surprise her, and she has the right to know, so we tell her ahead of time.
Mother
I don’t want to fix her
I don’t want Kayla to think that I want to fix her. I don’t want to fix her. Of course, all of us have that wonderful dream for our children that we want them to do everything and be the best at everything, and be perfect. No one’s perfect. I don’t want her to think “Oh they’re doing all these things because I’m not good enough for Mommy…” No. I want her to be able to live life more comfortably, and so that’s why we go the route that we go, and we have these therapies. And Kayla knows, we always tell her that. We want her to be more comfortable.
Mother
She has to have her own time
Well, since we wake up in the morning, we dance, we sing, you know, and before she goes to school. She comes home, and we just talk to her and we play with her like a normal child. She watches TV, she has her own time, and if you bother her, she gets mad. She has to have her own time, like any other kid.
Father
Mommy, I want to walk
I will say straightforward that there is no way that my kid would be walking right now if she did not work with me as hard as she did. I mean she put more effort into it than I’ve seen in grown men put in the Marine Corps. I would have a little three year old that would just say to me, “Mommy, I want to walk. Mommy, I want to walk. Help me learn. Help me learn.” And that kid would work day and night. She would struggle, and struggle, and struggle, and struggle. At the time I didn’t think I was being demanding because I thought it was basically hard core love. We needed to get through it. But I look back and go, “Oh, my God. I’m such a bad mother.” And she just says, “But Mommy, I couldn’t do this stuff if you didn’t do that with me.” But at the time I would just listen to myself and I would cry because thought, “I’m being so hard on such a little girl.”
Mother
Advocacy: Handing over the reins
I don’t know what came first, the chicken or the egg, but I happen to be a compassionate, giving person, and that has helped me as a parent and had also influenced what I have done professionally. I’ve been a social worker and a counselor for many years, and so it comes naturally–being an advocate, being a case manager, networking, collaborating, and trying to get things done. In the past year or so, I have kind of handed over the reins to help her assume that role more primarily and that involved giving her more knowledge, connecting her with more of those resources, because I know she wants to be more independent and I want her to be more independent. While I don’t define that as separating myself from her or making myself unavailable, I feel I have improved confidence that she can successful.
Father
We just try to focus on his strengths–he’s a great reader, he has a great vocabulary, he has a great sense of humor. We try to really encourage him if he gets an award in school. But we also have taken him to counseling, primarily for self-esteem issues because he’s at the age where he questions a lot why he wears a leg brace, why he’s had to go to the doctor’s so often and why the other children don’t. And that’s difficult.
Mother
Feeling self-conscious
As he’s getting older, he’s getting out into the world more. He’s noticing the differences between himself and the other children, and he’s getting a little bit bitter. Every spring, it would be very difficult for him to wear shorts because you could see his leg brace, and every spring he would cry and get really upset. We worked with him. Like when children approach you and they ask what’s wrong with your leg, they’re just curious, they’re not trying to be mean spirited. Just explain to them that the leg brace helps you walk better because a lot of the children will come up to him because they think he’s broken his leg. That worked, and I think this year was the first year since preschool that he didn’t get really upset because they children know him now. They’re becoming more familiar with him so they kind of expect it, and they already know he wears the brace. That did help, but he still is self-conscious.
Mother
One step at a time
I think we’re learning. Probably a day doesn’t go by that we have to remind ourselves, “Let’s just take this one step at a time. Let’s just take care of today and that’s the best way to do it.” But it takes a lot of reminding ourselves to not jump into six months down the road. And I do find myself saying that to Justin all the time too. When he kind of becomes overwhelmed, feeling like it’s more than he can manage, we go back to “Let’s just take this one step at a time.” Let’s just get your braces off right now and then get you into a chair, rather than worry about the whole process of getting him from one thing to another thing.
Mother
You’ve got to let them zone out
One thing she does that drives us nuts is that when she doesn’t want to do something she goes into to one of her zone out moods. She drops her head and she looks to me like she doesn’t have a clue what’s going on in the world. But then I picture what happens when I pop in to one of my other kids’ classes. Not every kid head is straight up and paying attention to what’s going on. They’re staring out the window, their head is in their hands, or their head is on the desk. You just have to remind yourself, “Ok, what is typical?” You’ve got to let them zone out. You’ve got to let them think.
Mother
I just try and help him to feel loved and I give him the tools to deal with life in a difficult world. He knows that when he falls, he needs to simply get up no “poor me”. That’s life.
Mother
Sometimes he just needs to be a kid
He hates working with his physical therapists. This has been an ongoing problem and sometimes it feels very cruel doing this pushing him all the time. Sometimes he just needs to be a kid and not something broken that needs fixing. Chocolate helps!
Mother