Day to day life with family has ups and downs. Growing up isn’t easy. Conflict and frustrations are part of everyone’s life. This is a time when you are beginning to establish a separate identify; sometimes parents/caregivers may try to hold you back as you assert yourself. In addition to the usual stress of growing up, there are extra strains for teens with spina bifida and/or hydrocephalus and their families. Although each of you are unique individuals with your own set of feelings and attitudes there are many problems we all have in common. While there are added strains there are number of strategies you can use to gain your independence as you grow up.
Following are some scenarios that could possibly take place in a family. These scenarios were created to enhance your communication with your parents as you start to establish a separate identify and independence.
1.) I need help getting dressed in the morning and my mother provides this help. To make things easier and to save time, my mother buys me loose clothes, sometimes two or three sizes too big. Clothes are pretty important where I go to school and I’d like to be dressed more fashionably. How can I convince her?
To start with, talk with your mom about wearing large clothes and how large clothes make you feel.
Explain to your mother how you feel. Don’t be surprised if she tells you that what you wear isn’t important, it‘s who you are inside.
Share with your mom that teens judge others by what they wear. In addition what I wear influences how I feel. So, when I wear baggy clothes I feel no one will want to talk with me and I will have a hard time making friends.
You can present it as a proposal. Ask for control of part of your budget for clothes (at least 25% of your clothes shopping).
At this point you need to show your mom you’re responsible and organized. Make a plan for your purchases ahead of time and decide what is the most you can spend on various types of clothes.
Things to remember when you are purchasing clothes:
2) My mother and I were having a fight last week about my curfew (too early) when she said, “It’s bad enough that I gave you this condition. I am not going to let you get into unsafe situations. I asked her what she meant, but she wouldn’t answer. My parents have always told me that my condition wasn’t my fault, that I am not responsible for it. Is she saying that she is?
Parents often feel their children’s problems are their fault. This is especially true of parents who have children with disabilities. Parents somehow feel responsible or guilty for you having sb&h.
As you were growing up she may have hidden these feelings by throwing herself into your care. Now as you are getting older and are taking more responsibility for yourself, she may be flooded with feelings of guilt.
You can talk with your mom about this. Let her know that you don’t want her to feel guilty in five years for having overprotected you as a teenager. It may be that she will not let you talk with her about this or she may not be able to respond, but it is okay to try.
Try not to complicate matters further by feeling guilty about how guilty she feels about your condition. She can change how she is feeling and how she has chosen to feel is in no way your fault.
Continue to press for independence. Find ways of expressing your individuality –through the way you dress, your hairstyle, the music you listen to, the friends you choose. You need to be looking after your personal growth at a time when her guilt prevents her from doing so.
3) It is unlikely that I will ever be able to move out of my parent’s house. So why do people keep talking to me about independence? Are they trying to make me feel unhappy with my family? My family is the best support anyone could ever have.
Independence means learning to rely on yourself for as much as you can and to take responsibility for your thoughts and actions. No one is totally independent unless you lived on an island all by yourself and grown your own food.
An important part of being a teen is learning what you can do for yourself and figuring out how you feel about world issues. It means developing a sense of ideals that in some way define who you are and what you believe in.
You can start to take responsibility for your body. You can be the one to decide what to wear, when to bathe or wash your hair and what hairstyle to have. Even if you need help with all these things you can still make decisions about them. You may be able to do more of your care than you think.
Make sure you have jobs around the house. These can be suited to what you can do. If you are physically unable to clean things, maybe you can do menu planning or work on the shopping list. Maybe you can sort the clothes for the laundry.
Don’t put things off and plan head. This can be simple as making a study schedule so that you can meet your teacher’s expectations.
Find out about various social issues and take a stand on them. You may want to change your mind and learn more but don’t be afraid to have an opinion.
Develop a hobby or an interest in something. Find out if you can get together with other people interested in the same thing, either in person or by computer.
Make sure you understand what your condition is really all about. Consider helping someone else who could use some support.
Explore your sexuality. When you have sexual feelings, don’t push them away. Fantasize about what you like. You don’t have to go out tomorrow and do all these things. Pick something and work on it for a while. When it becomes routine, add something else in. Remember, it is up to you to decide what idependence means for you. Above are some of the things you can do to be independent.
4) I am 13 and my mother still catheterizes me. I tried to learn how a couple of years ago. But I kept dropping things and I was slow. It was faster for her to do it herself. I would like to try to learn again, but I don’t want to make life more difficult for her. She already gives me more of her time than my brothers and sisters get.
Even if it takes you a while, in the end this is going to save your mother time. Just as you sometimes have to spend money to make money, sometimes you have to use time to save time. You are getting to an age where being able to care of your body functions is important. If you are female, you will need to learn to put on a menstrual pad or insert a tampon when you get your period. Learning to catheriterize yourself is an important first stage in taking on responsibility for your body.
Catheterizing is a private thing. Whether you are male or female you are not going to want other people of either sex touching your genitals as if this was any other part of your body. Not everybody can catheterize themselves (you have to be able to use your arms and hands) but if you have the capability you should learn how.
Let your mom know that it is time for you’re to start learning again. If she says it will be too much work, point out that she didn’t keep your siblings in diapers forever just because toilet training was work.
Try to choose a time when things aren’t as rushed, like bed time. You may be able to arrange a training session at your spina bifida clinic.
When you have gained confidence you can take over the other times. If you and your mother use these times to talk now, you may want to find an opportunity to have five or ten minutes to talk every day when she no longer has to help you.
5) My father doesn’t spend much time with me. When we do go out, I like it. He and I do different things than I do with my mother. He let me take more risks. Is there anything I can do to have more time with him?
Many young people with disabilities say that their fathers are not as protective as their mothers. This isn’t surprising. It is much more common for mothers to be home full time with their children and they get into the routine of taking care of you. It can be harder for mothers to let go.
Your father may want to spend more time with you, but doesn’t think he can fit it in his busy schedule.
Is there a job your father normally does that you could take over? If you could do it during the week then it might free up some time for him on the weekend.
You could just find time to go for a walk or go for ice cream and by doing activities that you both enjoy it may fill the same need.
If a big block of time becomes available, he is more likely to think of spending it with you if he is in the habit of going out with you for shorter times.
Does your father have a hobby that you could get interested in? If he spends time on it every week, he may be happy to share this time with you.
Does your father know that you would like to be with him more? Maybe he thinks your mother does such a good job of taking care of you that there is nothing left for him to do. Make sure you tell him you are trying to think of ways that the two of you could be together more.