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Unity *Knowledge *Empowerment

Dealing with our puberty years as each of us can probably well remember or are currently experiencing with our own children is can be a very emotional experience. But it doesn't have to be a nightmare. It is also very possible to handle puberty and the Teen years and help our children have a positive outlook to life ahead.

There are many changes happening to our child. Physical changes of growing taller and other body changes, pimples emotional changes of feeling embarrassed, anxious, curious, are all adolescents understand around the world. And every single one of those young people will tell you NO ONE could possibly be going through exactly what I am, but it does help to know that someone can relate. This is the same for each adolescent regardless of their race, ability, ethnicity or gender.

It is my hope that after raising two children with special needs (both different) I can offer you some hope in telling you that it is possible to get through it. I can not promise Grey hairs won't come from it but I can promise also you will have a big heart full of pride in the end.

Some tips for Parents

1. Develop a communication relationship with your child early. If your child knows they can come to you for anything it will make it easier for them to listen and to speak to you about tough things. Easier said than done but from my own experience... After my child was done blowing up at me and had time to cool down 6 times out of 10 later they would come back and talk to me about it with a much more open mind.

2. When it's time to have the "birds and the bees" talk . One thing I found much easier when it came time to ensure they understand what they were going through was we helped all our children from the time they were young understand about their bodies, their right to privacy and that really seemed to help them open up when we talked to them about the changes going on with their bodies. Some additional tips I've found researching this are:

If your just starting to have conversations around sexuality with your child, regardless of their age, it can be helpful to start out by letting them know what you want to talk about and then asking them what they've heard. This is true and does seem effective because  for example. "your body is going through lots of changes right now. It's called puberty. I want to talk about you getting your period. What have you heard about girls getting their period?" But please note. It's awkward enough for a lot of people to even have this conversation in the first place it's even tougher for your child to be listening to you talk about this to them. Don't try to be "cool" and do not try to be recited just be you.. You talk to your children about bad dreams and not passing gas.. You can do this too.

If you discuss the correct terms for our body parts from the time they are young it will be much easier to discuss with your adolescent later. And remember if you didn't have a chance to do this while they were young be ready they may laugh. Children aren't trying to be rude. It may be they are nervous and embarrassed because they are changing and are not quite sure how to feel about talking about out loud.

 If your not sure were to start. You can obtain information from Planned Parenthood, your local doctors office and some terrific sites online. There are many sites that deal directly with Puberty and Disabilities. Your adolescent is going to be going through some amazing changes in their lives. We as parents can help them embrace their youth and be proud of what's happening.

 Tips for Professionals

My first tip is don't look at the disabilities. Look at the person. In my daughters case she understood every single thing everyone ever said to them. Her intellect is in tact and because she was defaulted by the lack of gauging that intellect many presumed she wouldn't understand. She was always embarrassed when she got changed around men in school or just with a divider separating her and all her peers.

I was pleasantly Ecstatic that all people realized she was a healthy teen that was the ultimate "boy watcher" She would darn near break her neck to watch a cute boy.. She got tagged "boy watcher" by one of her school aids.  Please don't presume hand each and every child the power and right to know what's going on with them.

Additional tips:

• Professionals (educators, teachers, direct care staff, etc.) should establish a group agreement or a set of ground rules before addressing topics of sexuality. It is important to set a positive tone and create an atmosphere where people feel comfortable and able to ask questions. Common ground rules include:

  • One person talks at a time
  • All questions are welcome
  • Personal questions are off limits
  • Different opinions are okay

• It’s beneficial to give examples of each ground rule that is set and to talk about how people feel when a ground rule isn’t followed (i.e., the social and emotional implications). For instance, an example might be given about "Susie" asking a question and someone laughs and says, "Everybody knows that!" Discussion can revolve around how that would make Susie feel and how that might make others feel about asking questions.
• Establishing ground rules is helpful even if you are meeting with a group one time, or simply having a 1:1 conversation with someone. It is often helpful to write the ground rules down and have them posted so that the group/person can see them.
• Acknowledge ahead of time that it’s okay to feel embarrassed and that they may hear words they’ve never used or heard before. It should be recognized that some laughter is acceptable due to nervousness or comfort level. In a group setting, it will be necessary for the adult to determine if laughter is a response to feeling uncomfortable or directed towards others. In the case of the latter, it will be important to refer back to the ground rules.
• When using correct terms for body parts or their function, it is often helpful to ask the person/group what words they have heard or used in place of the correct word. This will give you a sense of what they know and the words they typically use. Acknowledge that people may use lots of different words to describe the same body part or their function, but the group is going to practice and try to remember to use correct names/terms, etc. It can also be a time to talk about why some words are not ‘okay’ (i.e., slang words that are offensive to others.)

Additional Resources:

Life Horizons I by Winifred Kemptom, M.S.W., Instructional design by James Stanfield, Ed.D.
Life Horizons I is a series of slides with a teacher’s guide and accompanying scripts to provide information about the physiological and psychological aspects of sexuality and socialization. 
This resource is made up of five programs: "Parts of the Body," "Sexual Life Cycle," "Human Reproduction," "Birth Control," and "Sexually Transmitted Diseases."

 

Teaching Persons with Mental Retardation about Sexuality & Relationships by June Kogut & Susan Vilardo
A guide to use in helping you how to teach sexuality education to persons with mental retardation. This guide consists of nine different sections such as reproduction, relationships, and manners & grooming

Teens and disabilities

As I mentioned before I raised 2 teens with special needs. 1 with Cerebral Palsy and one with ADHD. I often wondered how much should I ignore their disability and raise them as I would my other children and when did I need to take into account their disability. How much was enough. Where was my balance?

When do we do more, when do we back off?  How do we find balance in our family and our lives? When we keep these things in mind and take a positive approach I believe we find our balance to a successful time with our children with disabilities during their teen years.

The way I see it a teen with a disability is still a teen. Their teen years will still be complex. They will go through physical and emotional changes. They will seek independence. This is true for children with disabilities. One of my daughters favorite activities was going to the mall with her friends. They would come over and take her out in her wheelchair to the mall. This may not be possible for each teen to do but if you have teens in your neighborhood or church group sit down and talk to them about ways your child could possibly interact with them. Check with your school to see about setting up a peer to peer program. This is where your child is main streamed into a regular class room setting with their peers assisting them to class or in class. If it is necessary for your child to have an aid find out if the aid could be in the background there to help your child if needed allowing them to be an active part of their world around them.

One of the things that several of my daughters teachers did for her was they programmed a special computer program to allow her to know what was going to happen next in her day. She also went out to "recess" or lunch with her peers. The students would work on class projects with her as well. Because she loved music so much we included her in choir in middle school. Because we gave her what she wouldn't have had as a teen with a disability in a self contained classroom, I believe we gave her a positive outlook and a chance to be one of the "kids"

If you find your child has those "teen traits" count it as normal growth and deal with them as you would normally with any other child. However, disability carries added physical and emotional hurdles involving the ability to participate, acceptance by peers and self image. They may become stressed, depressed, frustrated or angry with their circumstances. They may resent being ignored one minute and then angry the next when someone tries to help them the next. One difficulty with my son was he struggled with praise during his teen years. If I told him thank you for doing a good job he would just about blow his top. If I forgot to praise him however, I very often got a similar reaction.

It’s easy to be overprotective—after all, you’re a parent. Avoid being too controlling, talk with your teen about his experiences and feelings and how much help is to much as you work together to address problems. We do need to set guidelines and boundaries with our teens. If we set those out from the start that helps them understand just how far you will allow them to take things but allowing them a little room to work through issues they may have will create a positive balance between the two. Sticking to your word is another important thing. It's ok for things to change but talking them through with your teen will help them adapt to those changes.

You may be angry or even feel guilty about your child’s disability. I didn't go through the why me why my child stage until my daughters teen age years when I sat on the couch watching her looking out the window at her friends playing outside talking about the middle school dance. These feelings are normal, but they will not help you or your child work through a challenging and crucial time of life. If you can’t set those feelings aside, talk with someone who can help you—a friend, relative, or counselor.

Aim for as much of a typical teen life as your child’s disability will permit. You may have to overcome qualms about what your teen can do or should try. Give your approval to social activities and be ready to tackle dating issues.

If you help your teen with a disability to have a positive outlook, to be open and confident.  Allow your teen to build on their strengths building on their interests and taking an active part in their activities you will help her excel. Do not limit them to just  special needs classes but allow them to be a part of both regular ed and special ed you give them the tools they need to go forth into a positive adulthood.

You will need to be ready to step in on your child's behalf when it is necessary to advocate for them but first and foremost promote self advocacy. Teach them they do have a right to stand up for their rights and they do have a voice in what happens to them. Let them know they can participate in their IEP's and deciding what they want to have happen in their lives. Teach them when they are not comfortable with something they do have a right to say so. If they are not able to speak for them selves find a way that they can communicate to others they are not happy with what's going on or they approve.

The biggest thing to remember disability or not... What is NORMAL for them is Normal. Not what society deems as normal. Help your child learn to accept themselves in their own skin and it's ok to be different

As with all teens, be attuned to the mental health of a teen with a disability. Talking with a caring relative or with a faith or youth group leader can help a teen work through issues and feelings stemming from a disability. However, be prepared to enlist professional help.

Keep in mind the needs of the brothers and sisters of a teen with a disability—they can feel ignored, jealous, or stressed. Involve them in helping and caring for a teen with a disability, but try not to overdo it. Limit siblings’ tasks and give them a break. Provide one-on-one time with them—that’s important!

 

Please remember that a "disability means one or more permanent, major, life altering conditions. Which may be progressive or sudden and which may result from disease or injury. Disabilities include such a wide range of conditions and severity that  each case and situation must be handled individually. A lot of these tips may or may not be applicable to the most severely disabled teens but hopefully each will help parents deal with the challenge of a child's disability along with rapid changes that affect all adolescents.

I hope that through this article you will find something that can be of use to you and your teen.

 

 The Cerebral Palsy Network©1997/2008. All graphics are the exclusive property of CPN, unless otherwise indicated. Contact Cerebral Palsy Network   for further information. Last updated 05/27/08