Special Needs Parenting :: Carrying it Well - by Carey Nelson Handley
There’s an old saying, “Just because I carry it well doesn’t mean the load isn’t heavy.” This is very true of Special Needs parenting.
You see the smile on my daughter’s face as she greets you, but do you know the time it took to get her to be confident in who she is? There were thousands of hours of speech therapy to help her with expressive and receptive language disorder plus processing disorder and social skills training. Weekends spent driving an hour each way for speech therapy. Fights with the school over modifications in classes, testing and workloads.
You hear how she has three part-time jobs, but do you know how long it took to find places where she could work, be valued and accepted? It’s not enough to find things she would like to do but employers who would hire her, understanding how much more training and reinforcement would be needed. That’s why two of her jobs are in the Special Needs community where she can be supervised and monitored and taught. One of her jobs is in the workforce where she can model skills and behaviors from neurotypical employees.
You hear me say that she can’t be left alone but do you stop to understand what that means? Every time I go out, she goes with me, even if it is just to the corner store for milk. Do you realize she does not understand Stranger Danger and that to her, everyone is a friend. No amount of teaching or coaching or explanations will help her understand that there are bad people in the world. So, she is constantly supervised and protected.
You see her attend networking events with me but are you aware she doesn’t realize that just because I shake hands with strangers doesn’t mean she can do the same thing at stores. To do so may put her in danger which she has no way of assessing and no permanent tools to know how to protect herself.
You know her as a happy young lady, but do you realize that I’ve had to listen to her say, “I just want to be normal” or “Why don’t they want to play with me? What did I do wrong?” How do I explain that she did nothing wrong and that there’s no such thing as ‘normal’ to someone whose heart is crushed and who doesn’t understand social dynamics?
You think of your own children’s future and how they will move on, have careers and perhaps marriage and families of their own. Do you realize mine never will? How do you stop yourself from feeling sad for what she won’t have while still celebrating the incredible person she is? And, what happens when you are gone? Your children will be fine in adulthood. You may have designated a guardian for your children until their 18th birthday but mine will need one for life. How do you ask someone to change their entire life for something they never asked for in the first place?
Think about that opening statement - “Just because I carry it well doesn’t mean the load isn’t heavy.” What you see is 25 years of struggling to find answers, find solutions, find alternatives. Nothing written here is a complaint. My daughter has my heart and I cherish her. They are simply facts that most don’t realize or think to ask. I’ve always said I’d rather be asked than to have assumptions made because the more you know, the more you understand.
That’s all any of us want.