Every parent with a special needs child remembers the moment when they first heard their doctor’s diagnosis. Whether the specified disorder was “developmentally delayed,” “autistic,” or the ever-ambiguous “special needs,” the rush of emotions is powerful and immediate. Some are angry at first. Others are ashamed. Most are confused. But all are worried. Worried for their child; scared for themselves. Will he be able to fit in with his classmates at school? Will she be able to go to college? Will he be able to live on his own? Will she be able to marry and have children? How am I going to afford this?
It is all truly disconcerting as a parent. But the reality is that diagnosis is only the first step of a shared life-long journey the parent is about to take with their child. And as with any journey, one must prepare. Preparation eases fear. That is the goal of this blog.
Preparation Point 1: Take Care of Yourself – Similar to the parent on an airplane who must first put his own oxygen mask on before his child’s in the case of a sudden decrease in cabin pressure to test oxygen levels, the parent of a special needs child must first take care of himself in order to be of any help to his child. Feelings of anger, fear and shame are normal and understandable, but in almost all cases counterproductive. These feelings oftentimes take a toll on the parents’ mental health, but they also inject negativity that the child will detect, and perhaps worse, may internalize.
So do what you can to minimize these feelings. Take time out for yourself. Go to the gym. Eat right. Watch movies. Remember that you are your own person and your child’s diagnosis doesn’t change who you are. And importantly, recognize that you are not alone on this journey – with 1 in every 50 children in the United States diagnosed with autism, there are thousands of others like you. Speaking with other parents in the same situation every now and again makes sense. You can find a list of autism organizations that can help you find a local support group here. One such group is sponsored by The National Autism Association NY Metro Chapter. Negative feelings can’t be eliminated, but the goals of you and your child are better served by hope and optimism.
Preparation Point 2: Take Care of Your Marriage – There may be things in life that are more easily done by one person rather than two, but the journey with a special needs child is not one of them. You will want a shoulder to cry on. You will want a sounding board with whom to discuss treatment options. You will want someone to stand with you when the school wants to remove your child from class because his repetitive motions are disturbing the other students. Many parents of special needs children are single; their journey can be particularly difficult. Those who are fortunate enough to be traveling with someone else would be wise to remember that from time to time.
One study found that parents of autistic children have higher divorce rates. While there may be conflicting studies, divorce is prevalent in the autism community, and it’s not hard to see why given the stresses that caring for a special needs child can bring. The parents of a special needs child should be a united front, advocating for and defending their child to the world while projecting love, support and trust at home. Divorced parents may be able to do that; married parents certainly can.
So take care of your marriage. It seems simple but it is so important. Go out to dinner as often as you can. Talk to each other about things other than your child. Buy flowers. Hold hands. Hug. Minimize fighting, especially in front of your child and never fight about your child in front of your child. Love your spouse like your child’s wellness depended on it, because it does. In a weird, inverted way, the journey with a spouse can actually be fun – it’s you two versus the world.
Preparation Point 3: Become an Expert, Become an Advocate – A natural antidote to fear is action. Once you have taken good care of yourself and your marriage (if you have one), spring into action by learning everything you can about your child’s condition. Learn its history. Know the therapy options. Understand the biology. Read everything you can. And don’t limit yourself to the internet (much less, gasp, Wikipedia) – read books, journals and magazines on the subject. Take your education further by speaking with professionals who treat your child’s condition. Be familiar with the latest studies and the cutting edge treatment options.
To be blunt, your goal should be to know more than your doctor. That way, you can effectively challenge their diagnoses and recommendations. Not all doctors are created equal, but even if you have the best one, you should ask her questions until you are blue in the face. Why are you recommending this drug over that one? Why are you not considering this kind of therapy? Are you familiar with that study out of Sweden from last month? What does that word you just used mean? Never be embarrassed by asking any question. You want to know everything you can so you can make an expert decision, not not just an informed one.
As I wrote in my last blog, you are your child’s best advocate. Indeed, in most cases, you are your child’s only advocate. Take charge of the situation with knowledge and understanding and don’t be afraid to push back on the medication establishment. Always remember your unique moral authority as the child’s parent. This is a shared and collaborative journey between you and your child and what happens is not pre-ordained – the decisions you make and the actions you take will matter. So prepare yourself.
Shirael Pollack is a pediatric physical therapist and owner of Watch Me Grow Sensory Gym and Speech Language Center in Manhattan, New York. She is devoted to helping children with a wide variety of physical and developmental challenges by providing therapy that is both fun and effective. In addition to her practice at Watch Me Grow, Shirael is an active member of the National Autism Association NY Metro Chapter where she currently serves as the Chairperson of the Fundraising Committee.
The views and opinions expressed on this blog are purely the blog contributor’s. Any product claim, statistic, quote or other representation about a product or service should be verified with the manufacturer or provider. Writers may have conflicts of interest, and their opinions are their own.