What is "Special" anyway?

Have you ever been lumped into a group for whatever reason and somehow don't feel like you really belonged there? Or that maybe somewhere along the way, someone misunderstood what they were classifying you as. Maybe they didn't understand the definition or didn't understand you.

For a while now, I have pondered the term Special Needs. What does it mean exactly? By definition it means:

special needs

plural noun
the special educational requirements of those with learning difficulties, emotional or behavioral problems, or physical disabilities.
(source: dictionary.com)

While I get the actual definition, my unsettling feeling is that the actual label varies by such a large range to those of which it is given that I can't really grasp the ability to allow this title to adapt to our family or to LB.

Until lately.

You see, I have a few friends that have kiddos that are completely non-verbal. Both of which are wheelchair bound. One Mom is a single Mom and she has never heard her teenage son say Mom. While my other friend spends more time in the hospital with her gal than she probably does at home. These moms are Special Needs Moms. They deserve the title. They have earned the privileges and additional support that comes with such classifications.

So for these reasons, I have a hard time identifying myself as a "special needs Mom" in the sense of the word. However, the older LB gets, the more adaptable we have to become to her needs and her challenges. The more aware I am becoming to her disability and what that means for her daily struggles and future.

Let me explain a bit more. Until the last year or so, she was this adorable little baby that gave soft hugs and waved to everyone. She may have had a messy face because of her poor ability to feed herself well, but that was OK because she was "just a baby." Or that she wanted to hug everyone she saw was OK because she was "just a baby." She wasn't doing this, or that or did this too much or she wasn't strong at that... it's OK, she's "just a baby."

Over the course of the last year, it has really hit me. Maybe it's the fact that she's almost doubled in size and we are still changing diapers. Or that we are at the highest size in diapers and she isn't really interested in potty training. Or maybe it's the fact that her listening skills and following directions aren't where we want them to be coupled with the fact that her strength is also greater.

OMG, she's no longer, a baby.

She also has a younger sister that is paving the way of all the things that she SHOULD be doing at her age yet may not even be on our radar for her yet. Of which I should also coin as her own "special needs" that can be just as exhausting!

I know, I know, I shouldn't compare, but it's a natural form of parenting. You see, I have great expectations for all of the people I meet. My children are no exception. Myself also being at the top of that list. I know my girls will do great things because they have a wonderful support system and a determined momma to make sure of so. But that's a discussion for another day. I just want to know that I am doing all I can for her. That she has every opportunity in the world to make her the best version of her. To make her as independant as possible.

Back to my original train of thought....one mom of a young adult male recently told me, "Services are plentiful when they are young. But when they are older, its much harder to find the groups and participation from other families because it just isn't there." Or the other mom of an older adult who's son is showing signs of Dementia at just 34, "Enjoy her now while she is young because when she is older, it isn't as 'cute' anymore."

While these comments may seem depressing or sad to some, I see where these moms are coming from. They have walked many years in a fight. They have pushed the limits and fought systems to get their kids the services and support they needed when support and services were hard to come by, if even available. All while taking care of their childrens' daily needs. The therapies, early intervention, the school systems, the day to day tasks of taking care of someone that can't do it ALL on their own. As they got older, and became bigger than their mothers, and probably much stronger too, these women fought and continue to fight to see the best out of their kids. Searching for playdates and friends and testing for all of the medical things your child "could" be susceptible to. Navigating the insurance companies alone could be a full time job. It's a lot of work. It's pretty exhausting on some days. But these are the "special needs."

Recently I called to make sure LB was still on the waiting list for the Medicaid Waiver. In the state of IN, you can get on a waiver program that helps with services and costs of various needs for the individual. When I was working, and when LB was born, I had phenomenal insurance so this convo didn't phase my arrogant mind of what it could really mean for my family. Fast forward 4 years and now I see what this program could provide for us as we anxiously await the final call. It means a great deal now that our insurance isn't so great. And we have 2 additional kiddos. Oh and to have them provide a sitter for LB just to give me a break, means so much to me. Because I was also, and really still am, the mom that thinks I can do it all. I sure give it a helluva run and always will! But a break now and then is a nice welcome.

So, I guess where I am right now is learning my role. What does Special Needs mean to me and how has it going to change my thoughts and actions? I knew all along what it meant to my daughter. I knew what I was 'supposed' to do. But reality feels much different than my planned course of life on paper. So, if Special Needs is now the group we are a part of... I am guessing I have a front row seat. And I am learning to adjust to that. I am learning to be OK with that.

While it wasn't the journey I originally planned, I sure do like my tour guide.   (sorry, couldn't find the original source.)

And if given the chance, I wouldn't change a thing about her.

Until next time...


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