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Saturday, June 27, 2015

The Child I Dreamt Of

There are many things about being a "special needs family," that suck. Yah, I know, my Mom never liked the word "suck" & for the most part it's not allowed in our home. I'm sure there are way more eloquent words I could choose, but the truth is, a lot "sucks" about being the parent of a child with severe disabilities. Even though I usually try to look at the bright side, often I find myself defending my family. Typical families like to compare our lives, maybe somehow they think I don't see the comparisons fairly?

First of all, did you know Mark and I did not want to be living this life? We had aspirations of normalcy & expectations of greatness as parents! Mark & I didn't decide to have a child that demands society notices us, we would have preferred to be a "typical, boring American family," that blends in. We were not looking for more attention and to feel more special ourselves by having Teale. Teale happened to us and honestly, I would not wish the stress that accompanies raising Teale on my worst enemy.

I did decide to be "out there," though. I decided to honestly share the journey, in hopes it helps or touches others. I came to the realization early in Teale's life, that I could either wither up alone or I could take what life gave me & use the opportunity to make all the suffering somehow worth it. The attention our family gets, well, I would love for it to go away, but using that attention at least gives us some purpose.

When I share a story of Teale in a meltdown & a typical parent tries to compare it to their toddler or child, it enrages me inside. I may not react or share that such a comparison has no value, but for me it shows a lack of true understanding. After all I raised two typical kids, along with the countless other children through my childcare and Nanny career that has spanned over thirty years. Toddler's are not 235 pounds and 4 inches taller than me. Most of the typical kids I dealt with in meltdowns could be scooped up, Teale can not be. Mark and I have been dealing with these challenges for over 16 years, the game changes, but the fears are often the same. We don't know Teale's future, we don't know if she will be stable or if her moods will challenge us into old age. Yes, this too is true of typical kids, no one knows the future.

I'm sorry to sound so dramatic, but I'm worn. The care of a special needs child is different. I can say this with one hundred percent certainty, because I also have typical children. It shows a huge lack of understanding & compassion when a person tries to tell me "how their typical" child is the same. Sure, Teale does plenty of typical things and when she does, we acknowledge them and often, those behaviors give us pause; she rolls her eyes at us, she loves her Daddy far more than she loves me, she can be fiercely independent and extremely stubborn, she's "girly" like a teen, she loves shopping, sitting around watching YouTube and hating her little sister, Gwenn. Just to name a few "typical developments" of Teale.

One of the biggest differences between Teale and a typical child of 16 years old is that Teale has NO FILTER when raging! Most typical kids, even as young as 2, know that hurting their parent is wrong. When they are mad, they may do some horribly violent things, like hit, kick, bite & throw things, but they do not do it with the same force as our daughter. I am literally scared I may be hurt by her when she is raging. I often fear for my eyes being damaged & my bones being broken. Yes, a rage in public with any child is embarrassing, I have lived that also, but a rage in public or in private with Teale is a whole different level of scary. When your toddler rages do you consider whether you need police back up or if CPS will be called on you? We've been in situations where the police were called on us because people thought we were hurting Teale, when all we were trying to do was keep her and others safe.

So not to belabor the point, Teale's life is different, as are all families who live with a special needs person. As Mark said last week in a doctor appointment, we know that there are many people who have it way worse than us, but we also know how difficult the life we live is....

So in conclusion, please don't tiptoe around me, I want you in my life. But also, try to consider how much you don't know, we go through, day in and day out, as your children grow and mature and move on in their lives.... We are often struggling with some grief because the child we dreamt of, is gone...

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