Princeton's Ask the Doctor November-December 2019

Lessons from the Trenches of Special Needs Parenting

Parenting any child is challenging, but the joys and feelings that come with parenting a child with special needs are unique. All children are special in their own way, but a child with au- tism, traumatic brain injury, intellectual disabilities, or language and speech delays requires a different level of care and under- standing. We don’t profess to have all the answers, but these are some lessons we’ve learned from the trenches of special needs parenting. Hopefully, they will provide you with some support and comfort when you are feeling alone or overwhelmed. You aren’t perfect – and that’s OK! It might feel like you’re under a microscope and have to do every therapy, nutritional program, treatment, and so forth to help your child. You don’t. Trying to do it all will just make both of you crazy, cranky, and exhausted. There are going to be times

K I D S ’ H E A L T H & C A M P

when you lose your cool, the laundry piles up, or you have cereal for dinner. The most important thing you can do is set aside your self-doubt, cut yourself some slack, and let your intuition help you find what works best for you and your child. More isn’t always better. Downtime, snuggling, and quiet moments are important, too. Trust Your Instincts: You Know Your Child Best You may not have a medical degree or Ph.D., but you are an expert on your own child. No doctor, nurse or therapist who spends 20 minutes with your child could possibly have your in-depth understanding of their needs, their personality, and what they’re capable of doing. By all means, use doctors and other professionals as resources to supplement your own knowledge and provide care. But listen to your gut. If something doesn’t sound right, question the experts and get a second opinion. If you feel you aren’t being heard, speak louder. Don’t accept arbitrary limitations that others may place on your child. Special Needs Parenting is Exhausting . . . and Can Be Lonely For most parents, diaper changes, spoon feeding, baby proofing, and hypervigilance are a temporary phase while their kids are babies and toddlers. But if your child has special needs, these caregiving routines can go on for much longer. Playdates and outings are more complicated when your child is nonverbal, has sensory issues, is prone to meltdowns, or has no con- cept of danger. These challenges can cause special needs parents to withdraw socially from others, relying only on personal reserves of energy and good humor to retain their sanity. If you find your social circle narrowing, don’t be afraid to ask others for help. Find other parents in your area who are deal- ing with similar challenges. Call an old friend or invite someone over for coffee on your turf, where your child is likely to be safer and more comfortable. Even small interactions can help you beat back the loneliness that we all feel. Don’t let the role of “special needs parent” become your only identity. By taking care of yourself, you’ll be better able to care for your child. Prepare for the Expense Even if you have really good medical insurance, raising a child with special needs is expensive. Co-payments for thera- py, doctor, and specialist visits add up quickly. Medications, diapers, and special foods are pricey. Medical equipment like wheelchairs, eyeglasses, hearing aids, orthotic supports, and special shoes are not always covered. You might miss work more than other people and find it hard to pursue higher-paying jobs. A single hospital stay can wipe out your savings. If your child needs lifetime care as an adult, the cost can run into the millions. Many families take out second mortgages, de- plete retirement savings, and go into debt. Be sure to research all potential sources of support before you pay for things out of pocket. Your insurance might cover di- apers and nutrition supplement milkshakes if you get a prescription from the doctor. Parents of slightly older children with ..continued on page 26



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