A parent solicits my guidance: How does she know if she is approaching her young child’s special needs the right way? The child has complex medical issues, developmental delays, and cognitive abilities that test in a wildly wide range because the boy’s speech and motor delays complicate testing. The mother wants his teacher to hold him to high but reasonable expectations. She wants to reinforce at home the skills he is learning in school. She wants him to reach his potential, though she has no idea what that potential is. She also does not want to overtax her son or her other children or her husband. No mention of overtaxing herself, of course.
Ever since I realized that parenting books did not speak to Sam’s development (Interestingly, I blamed the books’ authors for their narrow scope until the doctors and therapists taught me how wide their scope would have to be to encompass Sam.), I have wanted to find or create a book containing the wisdom of experience. What do mothers and grandmothers (Interestingly, the voices in my ideal book are always female.) remember about their child-rearing experience? Give me a book in which they talk about what they did and how it felt; what they’ve learned as their children have matured into adulthood; and what, in retrospect, they wish their younger parenting selves had understood.
Always my book provides comfort. Only comfort. Raising children had been challenging. I can laugh and cry and commiserate with the anecdotes. But at the end of the day, after the trials, tribulations and uncertainty, the children all grew into healthy, successful, independent, well-adjusted adults. Every contributor to the book concludes with the same hard-won admonition to younger mothers: don’t worry so much!
Some people dream about winning the lottery. Some people dream about world peace. I dreamt of discovering this book.
Now my children are almost old enough for me to contribute to the book. Fifteen years of diagnostic questionnaires and evaluation results, fifteen years of therapies, fourteen years of IEPs, and a young woman on the verge of legal adulthood. One would think I could, by this point, provide some guidance. Either tell younger mothers not to invest so much time and faith in the therapies, or tell them that every day of exhaustion and effort has paid off. Or maybe even say that I should have skipped x and tried y, because I’ve seen y work miracles. Biofeedback? Cognitive Behavioral Therapy? Floortime? ABA? RDI? Social skills groups? Yoga? Craniosacral therapy? Walhlbery brushing? Vision Therapy? Auditory Training? Interactive Metronome? Improv class? Occupational Therapy? A gluten and casein free diet? Vitamins? Homeschooling? Martial Arts? Medication? A white board in the kitchen?
The sad truth is that I do not know what we did right and what we did wrong, and I no longer believe I will ever know. One friend says she would have halved the time her son spent in therapy. Another wishes she’d had the resources to quadruple her son’s interventions. On bad days I wish I had tried everything other than the things we tried, and on good days I feel like Goldilocks eating the baby bear’s porridge: just right. Unfortunately, we have no ability to run a double-blind research study on my daughter.
Of course I am being disingenuous when I say I have no guidance to offer. It’s just not the guidance that I wanted or that this mother wants from me. It’s not the keys to the kingdom. I can say: Acknowledge that raising a child with special needs is more stressful than raising a typical child. You are emotionally and physically strained. Anyone who tells you “all children are special” has not raised one whose path to, and existence in, adulthood is so fraught with uncertainty. Enjoy the enjoyable moments. Find adults with whom you can celebrate those moments and solidify them in your memory. Maintain high expectations for your child or no one else will. Never assume your child’s potential for growth has run its course—or (for better and worse) that your parenting responsibility has run its course. Most of all, make peace with the reality that you will get some things wrong.
When my mother was dying and my brothers and I discussed hospice care with a social worker, the social worker warned us that our mom might live another day or another two weeks, so we needed to accept the fact that we might be absent the moment she died. We needed to know that the moment did not reflect on our love for her or on the lifetime of our relationships with her. The advice seems trite to me on an intellectual level, but when the moment arrived and I was twenty minutes away, her message gave me much solace. Now when I start to berate myself for some inadequacy in my parenting of Sam, I try to apply a similar message: make peace with my inability to know or do everything.
So. How much therapy is too much? I don’t know. How much is not enough? Again, I don’t know. What are reasonable hopes, dreams and expectations? Once again, same answer. Will this child be “alright” and we should have worried less? Still, no wisdom to impart. Perhaps I’ll have better answers in another fifteen years. Thirty seems more likely.