The Millstone Times January 2019
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 autism, traumatic brain injury, intellectual disabilities, or language and speech delays requires a different level of care and understanding. 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 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 non- verbal, has sensory issues, is prone to meltdowns, or has no concept 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 dealing 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 therapy, 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, deplete retire- ment 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 diapers and nutrition supplement milkshakes if you get a prescription from the doctor. Parents of slightly older children with disabilities can be a great source of hand-me-downs. Learn about special needs trusts and ABLE accounts. Some state-funded waiver programs have waiting lists of 10 years or longer, but if you register your child at an early age, those resources might be available when they reach adulthood.
Decisions are Tough Making decisions on behalf of children who cannot always tell you what’s wrong is difficult. While most parents are only faced with the difference between signing up for soccer or piano lessons, special needs parents have a whole separate spectrum of decisions to agonize over. Making decisions that could af- fect the future of your child with special needs is heart-wrenching and requires a mindset that allows you to weigh all of the options, make your decision, and move on with life. You cannot spend time second-guessing yourself, trying to determine whether you missed something or feeling guilt later because a problem developed due to your decision.
Celebrate Small Victories Every parent loves to brag about their child, so go for it! The nature of your victories may be different than that of other parents, but it’s important to cel- ebrate each milestone as it occurs. All children are on a slightly different timeline, reaching breakthroughs when they are ready. Everything from turning over as an infant to learning to read or walk may be delayed . . . or unachievable for your child. But accomplishments are infinitely sweeter when they’re so hard won. The small victories are huge for us because we know the struggle and determination that went into them.
Raising a child with special needs isn’t a sprint – it’s a marathon. While most parents experience a transfer of responsibility when their child leaves the nest and enters the workforce, that may not happen for all of us. That extra time caring for and loving your child can be both a burden and blessing. Don’t com- pare your journey with that of anyone else. Parenting a child with special needs is extra hard, but it’s also extra rewarding. You will become extra passionate, extra humble, extra aware, and extra grateful. Without a doubt, your life will be extra interesting. Enjoy the ride!