Not all special needs parents are alike….part 2

After I posted my last post, I had a parent very quickly note that when they read the title of my post, they were expecting it to be about something else. I guess sometimes titles can be the same for many different things. This parent thought that my post would be about how different special needs parents approach their child’s situation in very different ways.

This is so true. It is funny that when you have a typical child, you are exposed to and experience so many parenting styles. You may not subscribe to them personally, but you eventually realize that to each their own. What works for one family, or one child may be very different from another family and their children.

This was a harder thing for me to accept after Maclain was born. It started very early on, right in the NICU, when I would track how often I was there, and how infrequently other parents were. Or I would watch carefully how many of the parents were not hands on in their babies care, and were never there for rounds. They hadn’t added any personal touches around the child’s isolette.

I would ask the nurses why there were so many “absent” parents, and I would usually hear ” Not all parents are like you” or “You aren’t like most of the parents we get in the NICU”. I didn’t really question it to them out loud, but I would think, ” How can that be that we are not all the same? Our babies are sick, and they need us, and we have to be strong and tough and fight for them, no matter what.” 

After Maclain came home, and since then, I have assumed the role of what some call “The Warrior Mother”. I have scratched, clawed, and fought to get everything for Maclain. I have fired doctors, switched therapists, defied rules, ignored medical diagnosis. I have created panic and confusion in schools, daycares, therapy programs. I have questioned the system, attempted to fight the system, and in some cases, skipped the system all together. I have learned to hide the tears, get my back up, rev the engines, and attack before the other side can. I have also embraced this life by joining groups, googling all hours of the night, befriending other special needs parents, seeking out the best treatments, and trying to make the absolute best of my situation.

It took me years to understand why not all parents in my situation did the same.

And finally I figured it out. We are not all the same. And that isn’t always a bad thing. In my moments where I can’t get out of bed, or can’t face another appointment, or dread making another phone call, it dawns on me. This life isn’t easy. Not everyone is equiped to handle things the same way. Who was I to judge? I have always said that no one knows what goes on behind closed doors. These parents that I had assumed didn’t care, are the same parents who may be dealing with depression, marital issues, single parenting worries, financial trouble, or they just may not be able to handle it. Maybe in the early years they were so afraid they would lose their child, they tried not to get too attached. And I get it now. It doesn’t make them bad parents, they are just doing what they know how to do, and they don’t love their kids any less. And even if they do, it is not for me to criticize. I have seen myself settle down a bit in the last year, with a little less fighting, a few less appointments, and finally a list of goals that we can reasonably handle. It doesn’t make me a bad mom, or mean I love Maclain any less, it just means that I have learned what I can handle, and what I can’t. It means I also have time to help any of those parents who would like a little more “warrior” in their life but don’t know how to do it.

But only if they want it. If they don’t, that’s ok too.


2 thoughts on “Not all special needs parents are alike….part 2

  1. Love it! I just was reading my story, we should be the first set of twin think alike ,act alike and start our on tribe ! I have been on this journey for 15 years . I was reading a very interesting letter today that 7 signed and sent to our government. I have to see if I can share this some how.We need to all join together and push buttons.It gets more intense as they grow up and our bodies get older and minds get slower..LOL! I have gotten very seasoned should I say from many situations these past …. years. You go girl ..I’m proud of you ! We have been blessed with Angels… the journey is so precious , we experience and receive back much more than some will ever know …..Cheers SISTA!

  2. You are the the hope for do many parents. You are a warrior and have added a very honest perspective for all those who struggle with parenting. Kudos to you and your amazing work you put a raw honest spin on the issues one may face with special needs kids and Mac ‘s teaching you something that you can share with the world.

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