My daughter, Faith, is now 14 years old. I find myself reminding people all the time that she is, in fact, just like other teenagers. And in many ways, she is. However, she has Down Syndrome, and that comes with its own list of challenges, in addition to the typical teenage issues.
Having an 18 year old son, and having been a teacher of middle school children for many years, I feel as though I know a thing or two about teens. They are trying to find their own way, often rebelling against authority figures, such as teachers and their parents. They are hormonal and emotional and wanting to become adults. Their focus is on themselves and their social life, trying to understand who they are as a person. What their friends think is more important than what you, their parent thinks, in most cases. Not to say all teenagers hate their parents, just the opposite. They want and need your love and approval, whether they want to admit it or not. But they certainly don’t express their love for you in the same way as when they were younger. It’s usually not even on purpose. It’s just that teens are often on the defensive or quick to defend their rights and trying to forge their own way. Battling for their own independence. So, as hard as it may be, we cannot take it personally.
In the same way, teens with special needs are also trying to figure out who they are as a person. They too, are hormonal and will rebel against their parents, wanting to do things their own way and in their own time. They too, want and need their independence. And they desperately desire your love and approval.
The difference is, they do have special needs. Depending on their specific diagnosis, those needs vary greatly. In my case, my daughter, Faith, has Down Syndrome. She is very smart and understands most of everything she hears, but is nonverbal. She is unable to say what she thinks or how she feels, with words. She does use some sign language and will point or grunt or make various noises to get her point across. In school, she uses a speech device that she can tap various icons of what she wants to say and the iPad will ‘speak’ for her. Although, that works in school, she doesn’t like to use the device at home. This presents a real struggle. It’s very frustrating for her… and for me.
Over the past 14 years, I have learned her ‘ways’. I know every sound and facial expression and have come to understand what each mean to Faith. Interacting with other people in her life, however, it’s much more difficult for her to make people understand what she thinks and feels. When her hormones were thrown out of wack, it became more challenging. Although knowing what typical teens are like, I realized quickly that she is just like other kids during puberty. The mood swings, stubborn behavior (more than usual), acne, growth spurt, etc.
What I have learned so far is that patience and understanding are key. She is changing and growing in ways she doesn’t fully understand. She needs to adhere to the rules and expectations of proper behavior; respect, kindness and following directions. But now more than ever, she needs unconditional love and acceptance. I cannot imagine her frustration, literally being unable to speak her mind or express what she is feeling. I may be able to surmise since I’ve learned the meaning of her gestures and sounds, but my heart aches to hear her speak to me and have a mommy-daughter conversation.
We make the best of it. We are very close and loving. So times she’s grumpy, I understand and give her her space. Other times, usually soon after, she will still sit on my lap to hear a story and hug and kiss me. We, special needs moms, are honored with having the most important job in the world. We are the person who loves our special babies more than anyone in the world. We are who they lash out at when they are angry. But we are also who they turn to in time of need. We are their biggest cheerleader and strongest advocate. We have endured medical issues, IEP battles, therapies and helping them to learn as they grow. We have overcome more than most. Mark my words Moms, we will get through the teen years.
So, to all the other “Special Needs Moms” out there, you are doing a terrific job! Believe in yourself. And always remember to Have a Little Faith.