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Puberty can be a confusing time for all teens but may present additional challenges for teens with special needs, as well as their families and caregivers. Remember: Your teen with special needs will experience the same body changes and hormone fluctuations that others do.
No matter how difficult this may be at times, it is another journey you and your child will conquer together. With preparedness and composure, it may even become an exciting time! Here are some tips for navigating this transition:
Puberty occurs on average at age 12 for girls and 14 for boys. Some teens with special needs may start puberty slightly earlier or later than their peers. First periods typically occur two to three years after the start of breast development, while enlargement of scrotum and testes is the first change boys experience. Emphasize to your teen that these changes are normal. Teens with special needs react better when they know what to expect.
Use direct, concise, anatomically-correct language, repetition, visual resources and stories. It is extremely important to include teens in the conversation to whatever extent they are able to participate. A great way to do this for teens of all abilities is to read books about puberty together. See below for some great resources.
Ensure teens with physical disabilities have accommodations at home, school, work and anywhere else that allow them to maintain proper hygiene and dignity.
Talk to your doctor: Sometimes periods significantly negatively affect teens' quality of life. In these cases, young women and their families may consider hormonal treatment to minimize or eliminate periods.
Keep line of communication open with your child, his or her health care providers and any other support people in your lives. Let your child know that questions, about anything, are always welcome. Your doctor may want to speak privately with teens starting at age 11 or 12. Encourage this if appropriate. These conversations are educational and empowering for your child and his or her health.
Visuals: checklists, schedules, picture books (ex: laminate image of body to serve as checklist for hygiene tasks)
Labeled hygiene kits: Making these kits with your teen can be a great teaching and bonding activity. Stock a plastic container or shoebox with hygiene items for a given task.
Oral health: Teens with special needs have an increased risk for oral health problems due to multiple factors. If you are having difficulty finding a dentist for patients with special needs, consider visiting Healthy Habits: Special Smiles stations at Special Olympics events
If your teen has difficulty bathing independently, try bath seats, removeable showerhead or scrubbing handles. Practice independence whenever possible.
Consider using spray-on deodorant if apply roll-on is physically difficult
Remember: Teens with special needs are not asexual
They have the same sexual curiosities and desires as teens without special needs. Make sure to discuss, in the context of your teen's abilities, healthy relationships, sex (even if you do not believe your teen will ever have intercourse), pregnancy and STI risk, sexuality and gender.
Educate your teen on how to handle situations during which they feel sexual desire (ex: tying a jacket around his waist to hide an erection in public, discussing "wet dream" so teens do not think they wet the bed).
Remind him or her of the differences between public and private places and which actions are appropriate where; make a list or use pictures if appropriate.
Even if your teen is not sexually active, he or she should receive the HPV vaccine, STI screening and, if appropriate, a Pap smear for optimal health.
Puberty is a time of all sorts of emotions. Teach your teen to express his or her feelings. If he or she can communicate verbally, teach how to name emotions. If not, use photos of facial expressions so he or she can show you.
Remember: Teens with disabilities have a higher risk for mental health conditions such as anxiety and depression, so keep watch for sudden, extreme mood and personality changes.
Discuss peer relationships
Peer acceptance is a main focus for many teens during puberty. Some teens with special needs may feel their differences isolate them during this time, making relating to peers difficult. Remind your teen of all the ways he or she is similar to peers. Discuss positive self-image and that our differences make us who we are.
Discuss relationships, social cues and social expectations.
Discuss peer pressure. If your teen has a negative experience relating to peer pressure, talk through what happened, what led him or her to succumb to pressure, the consequences and how it could have been handled differently. Punishment alone will not foster learning.
Keep your teen involved in activities that he or she enjoys despite increasing time demands. This will help foster self-acceptance and allow opportunities to meet other adolescents. Volunteering with your teen is a great idea!
Discuss vulnerability and sexual abuse
It is devastating that teens with disabilities are up to 10 times more likely to be abused sexually. Therefore, using short, simple statements to discuss inappropriate touching, consent, your teens' rights, and how to handle uncomfortable situations is incredibly important. Explain that everyone has a choice about being hugged or kissed and is always allowed to say no (even to Grandma). Make a list of trustworthy adults who he or she could talk to in an emergency. Many parents find comfort in teaming with their teen's healthcare provider for this discussion.
Check out some amazing puberty workshops for parents and/or youth (done by a very experienced sexual health educator who is also the parent of a special needs child, and has also published several books on puberty and dating for people with intellectual disabilities)
Boys, Girls and Body Science by Meg Hickling
What's Happening To Me? by Peter Mayle
Instruction Manual on Sexuality Education for Children and Adolescents with Developmental Disabilities by the Florida Developmental Disabilities Council, Inc.