Special Needs Parents: Challenges, Gaps, Solutions
What are the challenges for parents of kids with special needs? Where are the gaps—and what are some solutions?
To begin, I find it critically important to point out that I am not the parent of a child with special needs. I have not had to worry about my child’s development and whether her milestones were being achieved at the “expected” rate. Her future path, while indefinite for any child at the ripe age of two, is fairly predictable. She will go to school, probably play a sport, take up an instrument, or have a part in the school play. She will have friends, go to school dances, and.one day go to college. She will then move out of the house and start her own life. All the while, my husband and I will lead fairly ordinary lives. We’ll work, come home, and battle over whose job it is to empty the dishwasher and walk the dog. If we’re lucky, we’ll have a date night every once in a while and take nice family vacations.
Though I am not the parent of a child with special needs, I’m a professional who has had the benefit to learn from so many people whose lives are forever changed by this designation. Years ago, as a home-based therapist, I saw the expression on a mother who thought that if she faced one more tantrum with her beloved “picky eater” over a non-dinosaur chicken nugget meal, she would lose it entirely; I watched incomparable joy permeate the entire family when a four-year-old finally “used” the potty; and I witnessed incredible sweetness and tender moments shared at bedtime, reading Goodnight Moon and snuggling together in bed.
At Boston Medical Center, in the Developmental and Behavioral Pediatric clinic where I work, I watch as parents receive feedback about a diagnosis of autism spectrum disorder for their child. They are handed a packet of information and told about critical next steps. Early Intervention. ABA. School Enrollment. IEPs. Advocacy. Governmental Benefits. Insurance. Genetic Testing.
They sit stunned, wondering: Was it caused by something we did? Will he be cured? Tell us what to do.
There are no simple words to describe the trials parents of children with special needs face. The challenges, fears, hopes, and dreams are endless. I learned a long time ago that there is no “one size fits all” when it comes to children, much like there’s no “one size fits all” when it comes to the supports they need, day in and day out.
Our families possess extraordinary strength, determination, and resiliency. And I’ve learned many lessons from them.
- Take each day, one at a time. Realize there will be many ups—and hopefully not as many downs. Remember and celebrate each gain. Then use them to inform future moments.
- Learn your resources, know your resources, master your resources. This task will not be easy—and likely feel like a full-time job. Expect wait-lists, unreturned phone calls, frustration, and headaches. When you land on that gem—the terrific afterschool program, the irreplaceable therapist, the swim program that brings a whole week of anticipation to your child—it will be worth it.
- Connect, connect, connect with other families who have walked in your shoes. Many people will not understand, but the ones who do will truly get it. They will speak the same language. It is one with fewer words. And through them, you will have the support you deserve.
- School and home are forever different. Your child needs downtime, just as you need downtime. Teachers and therapists can provide insight and strategies for ways to structure your home environment and generalize learning, but their jobs end there. You are the parent—and must manage your home, your child, your bills, your life, and its responsibilities that extend far beyond brushing teeth and making your bed.
- Remember that you are your child’s best asset. No one can love your child like you do. He is the reason you get up in the morning and power through the day, despite not feeling strong or rested. You are his teacher, his coach, his role model, his advocate. Above all else, you are his parent, and for that job, he loves you and thanks you more than he can express. Be good to yourself. And keep sharing what you learn with others. Your job is tiring. It’s massive. And it’s ongoing. But it’s the most important job out there—and an inspiration to us all.
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