The challenges of raising a special needs child morphed when our daughter (who is cognitively delayed, suffers from emotional dysregulation and has a mild form of autism, Asperger’s) became a teenager. We entered the already murky waters of adolescence, with its relationship concerns, biological issues and new academic challenges and felt like we were drowning.
I truly believe that the graces we received from frequent reception of the Sacraments of Eucharist and Reconciliation sustained us and allowed God to guide our hearts in helping navigate these years. My husband and I realized that we had to develop a different perspective to help our daughter to succeed (and to maintain our own sanity). What follows is a little bit of the insight we have learned.
Don’t have the same social expectations as you might with another child. This is difficult because special needs children still experience the same desires for friendships and even boyfriend/girlfriend relationships, but are often not emotionally or cognitively equipped to handle them. We found that providing ‘safe’ spaces helped our daughter grow socially while still protecting her. Our church’s youth group leader was made aware of my daughter’s particular challenges and triggers. She worked tirelessly to create a non-threatening, accepting environment for our daughter. I worked on the core team to increase my daughter’s comfort whilst there and my husband and I volunteered as chaperones on the trip to the annual youth conference. When uncomfortable or confusing situations do arise (and they will; they are teenagers, after all) we would help our daughter post-event by conducting a “social autopsy” (Rick LaVoie) of what took place and how it could be handled next time.
Expect frustration, theirs and yours. Unfortunately, when my daughter gets frustrated she often gets stuck. She can’t think past her own situation and meltdowns do still occur (although on a much less frequent basis than when she was a child). It is hard not to meltdown myself sometimes! Couple that with a daughter with PMS (premenstrual syndrome) and a menopausal mom, and well, you get the picture. If my expectations about her behavior or my reaction to it are realistic, I can be better prepared to cope and help my child deal.
Look out for physical or emotional triggers. Things like PMS can make an already stressful time even more difficult for a teen who feels things differently either due to sensory issues or emotional dysregulation struggles. Similarly, an intense movie or book discussed in class, a change in schedule or even a long weekend can give a special needs teen particular stress. Just being aware of the triggers and being prepared for them can help diffuse some of the difficulty.
Hear beyond the tone of voice or the emotion. Teenagers have a tough time with finding the right words and tone of voice to adequately express themselves; add into that mix an adolescent who doesn’t quite read all the signals well and you are walking in a mine field. Try to listen past the voice to what your child is actually trying to convey. One of the deepest needs of every human being is to be seen and understood. Ask God to let you see your child through His eyes and with His understanding.
Don’t give up!! It often takes several approaches or many different family members to find the right mix of interaction, encouragement and even patience to get past my daughter’s rigid nature. I am often tempted to give up out of frustration, however, pushing through show’s her that we believe she can figure things out and understand, participating in her own solutions empowers her. That is what all teenagers want, to have control over their own destinies!
Find the gifts. Our daughter showed an incredible ability to work with younger special needs children very early on. She also has a gift for taking beautiful pictures, so she has turned this into a business photographing special needs children. She and her sister, Katya, a professional photographer, opened their business earlier this year. My sweet, young lady recognized as she discerned her future, that college would be very difficult for her, so she prayed about her future and decided to pursue photography. She has a huge heart and love for the Lord and she will be sharing her own testimony in a church at the end of December. She’s come a long way, so have we. Please pray for our family as we will pray for yours.
If you would like to read more of my thoughts on raising a special needs daughter, please check out these articles.
Copyright 2015 Mary Lou Rosien