The Shoes of a Special Needs Parent
One of the loneliest places in the world.
Step into the shoes of a Special Needs Parent, and you will find that it is one of the loneliest places in the world. Your world is wrapped up in the daily care of your child, no matter where they fall in the realm of needs. It is especially hard when you are in it virtually alone.
People will reach out with all kinds of advice: Put you first, Self-care, Support Groups, Play groups, have people come to you, etc etc. It is not always that easy.
There is not always time to take care of your needs and put you first. Who will feed and clothe your child? Who will do their homework? You cannot just leave your child by themselves, for long, even when they reach the teen years. Some children need round the clock supervision. Others are ok, for an hour, or so, but you must be within a 5-mile radius, just in case. Not to mention, when you are away, you cannot relax, because all the what ifs running through your mind.
Support Groups and Play Groups are great if there is one around you, that works with your schedule. When you have a special needs child, you cannot just say, “Oh yes, I will be there at one o’clock.” Chances are, even if you change the morning routine, you will face resistance, and be late. And changing up the routine of a Special Needs child? Totally adds stress to the day. Don’t forget, if you have developed any type of Social Anxiety, or have had it to begin with, the mere idea of joining one is daunting. Frankly, I find online support groups easier to deal with.
Having people come to your home is not always a comfortable situation either. First, it puts everyone off schedule, so there is typically behavior. Then there is the stress that comes with: is my home clean enough? Do I have enough to offer for drinks and snacks? What if my kiddo has a meltdown? Each of these worries is well founded by the parent shaming that we face when we have to go out into public, or from past family events. And yes, from past encounters with friends, when the behavior was witnessed.
Oh, and did I mention the financial crunch having a special needs child puts on parents? It is more than your typical child rearing expenses. There are doctor appointments that are not covered by insurance fully, if at all. There are special diets, and clothes. In some cases special equipment. these things are costly, and there is no extra money to just utilize. It has to be budgeted in.
A Special Needs parent does live a lonely life. Unfortunately, if you have not been in their shoes, it is hard to understand. You can make it easier for them though.
First, investigate the need of your friend’s child. Is it ASD? Downs? Cystic Fibrosis? What is it? What is it about? What are expected behaviors? Next, ask the parent outright about what they need. A cup of coffee 5 minutes down the road, for 20 minutes? No pressure. Also, ask what you can do to relieve the stress if you were to go to their house. Believe it or not, that simple question is showing incredible understanding and will help make the parent more comfortable. Finally, offer to be a support group for your friend. Support them by listening, being a shoulder to cry on, and by NOT offering advice.
Oh! I almost forgot: Always be understanding when the parent says “No I cannot come” or if they back out a million times. Don’t stop being a friend, just because their life is too difficult to understand. Chances are, they are battling far more than you can ever imagine.
And to those of you reading this, that are Special Needs parents? I am right there with you. I live this, daily. It seems like the older our children get, when you would think it gets easier and that you will have that needed "me time," the harder it is to get it.
Understanding from those who have a neurotypical life, is very hard to come by, even when they mean well. I highly recommend on line parent support groups and journaling, to release some stress. It is not heaven, but one day, you will have someone that will take those extra steps for you.