Supporting Parents With Special Needs Children

            Being a parent of a child with additional needs is difficult. There are so many different levels of need as well that every parent seems to need a different level of support to maintain some form of sanity. I know a lot of parents turn to their faith in God above all else, but sometimes we just need that someone to listen. We don’t need to be told that miracles happen, we don’t need the constant optimism that I have gotten from different people. We need that outlook to be brought to our attention here and there, but just because we are grieving what we thought we would have, doesn’t mean we think our situation is just dark and gloomy. It isn’t easy to maintain a bright outlook when there are hospital stays where a doctor tells you that your child could end up with a tube in her throat and it tears you apart. We try to keep hope, and we don’t need to be told to keep that hope, we just need a shoulder to cry on and someone who will listen in those times.

            Next when parents bring up a concern or a question, please for everything that is holy do not judge them. My main example is that my husband and I have been fighting ourselves for months trying to decide if we want to continue to try having one or two more kids or not. It is not an easy chapter to close and there is a lot of grieving that can happen in this time frame. We were told by a family member that my husband would have to stay home and miss the birth of his third child if we decided to have another child. Since they responded so harshly and judgy, we went on to ask about what happened if me and my husband happened to suddenly pass. Instead of being dedicated to figuring things out, this person said, “Well we would hire a nurse until we figured it out.”

            Absolutely no willingness to learn now while we are alive, using the excuse that we are just too far away. Yes, I get it you can’t come every week, and neither can we but showing absolutely no care to learn while we can give a play by play is just disgusting to me. Please if you want to show that you truly care be willing to learn when you can. Do not say it’s because of time and distance, you can learn something about that child’s care in ten minutes then use the rest of the visit to play and have fun. Not wanting to make things easier for a family when you want them to come see you etc., makes it hard for them to come see you.

            They aren’t just thinking about themselves, but of all the things that they must pack to try to make it easier and all the obstacles in a different home. You might think you have a quiet spot for them etc. but think about all the stairs you have in your home. Can you pack around a 20 plus pound child up the stairs? What about all their equipment? My daughter’s stroller is probably close to 30 to 40 pounds in weight itself. Really think about what you are asking and if you would be willing to do the stuff they do if you want them to come over. If not then try to see them, don’t just say you wish to see them more otherwise you are just wishing the time away.

The bottom line boils down to be involved if you want to and check in on them. Don't wait for them to call all the time thinking you are giving them "space" there is no true space when you are caring for a child in general and when it is a child that continues to depend on you 24/7 for absolutely everything you have even less time. If you truly care be open to them and ask what they need, help them by doing their dishes, or if you're far away be willing to listen without judgement of their life. Just because I have a special needs child doesn't mean the way I wanted to live my life is a dead dream, it is just going to be harder and more full-filling when I do accomplish what I want. Support what they want, believe in them, and help them whenever you can even if it is simple as showing interest in learning how to care for their child so they can go out for an hour or two.