Sunday, May 15, 2016

Caught Between Baby And Child

There comes a point when that adorable baby with Down syndrome grows up into a child with Down syndrome. There comes a point where the child maybe still acts like a baby in certain areas, but no longer is a baby. Age-wise, this child fits with the older kids, but behaviors perhaps don't allow this to be the most feasible placement solution.

There comes a point when this child with Down syndrome hangs precariously between the baby and child category, fitting completely into neither side.

There comes a point when a child with Down syndrome needs a cheerleader more than ever.

Yes, the early on health issues are SO HARD. And yes, dealing with three years of constant therapy is wearing. Beginning preschool and holding your breath about this big life transition- tricky, yes. But navigating life with a 6 year old who struggles to communicate and uses bad behavior to compensate for this struggle- a child who others might struggle to "get"- a child who might still have some very babyish behaviors- a child who doesn't naturally go along with the natural flow of "age category"- a child who technically is ready to be pushed to the next age of activities but who just so isn't ready- this is the time to step up and practice what I have preached for the past six years. This is the time to cheer for her. To "get" her when no one else can. To make an in-between age category for her. To love her right where she's at.
This morning in church nursery, Addison was quite aggressive in her behavior toward other kids (the class is now filling with younger kids- the ones Addison's age are graduating out). Also, Addison bolted from nursery and disappeared for a while (this is a BIG problem with her...the biggest reason we are selling our house near a busy road). This morning it became very clear that Addison needs to graduate out of this class because it's just not working for her anymore. But the other kids graduating, they are all going to an "big kid church" option that Addison would need a one-on-one aide to successfully navigate.

So I ponder- she is "too old" for nursery but "too young" for big kid church. Where does she belong?

And I realize- this isn't a problem with our church or with nursery or anything in between. This is the reality of having a child with severe delays- of parenting a child with special needs.

There comes a point when it is up to the parents to make a place for her to belong. To hold a space for her. (Side bar: this is why I LOVE that she has 3 siblings. She has a built in space where she will always belong- defined to fit exactly HER.)
So we make plans, and we decide to keep her with us in big church- taking things to keep her occupied- to try a new level of training to keep her in church in-between us- and we are happy with this because it seems like the next thing to try.

But even though we have found a solution to this specific instance, the problem doesn't go away. It will come again. And again. And again.

Because the reality of special needs parenting is, defining categories and making a place for her to belong and cheering for her- this is a constantly changing picture. A moving screen.

And while people are quite eager to cheer alongside a picture of an ADORABLE baby with an extra chromosome, sometimes they aren't so quick to cheer with an older child facing life issues that come with being older and yet younger at the same time.

I spent a lot of time blogging when she was that adorable baby. I blogged that she "deserves just as much respect as any other child" is "worthy of life". I blogged that we fight WITH her. I blogged that she was capable of doing ANYTHING she set her mind to. I blogged that kindness was king. I blogged that she was "rocking an extra chromosome".

Now that the time has come that from the outside looking in at my child/baby, some might not agree with all of those sentiments. And so I am here, setting aside the busyness of the four kid thing to say, she STILL deserves as much respect as any other child. She STILL is worthy of life. She STILL gets us fighting with her. She STILL is capable of doing anything she sets her mind to. Kindness STILL is king. She STILL is rocking her extra chromosome.

The game may change as life continues on, but the rules remain the same- "LOVE ADDISON".
I get discouraged at times because she isn't doing as much at the end of kindergarten as even her peers with Down syndrome. She isn't reading. She can only count to 15. She isn't fully potty trained (she is fully "aide" trained).

There are a lot of "she can't"s.

But I am learning- it's not about my timeline for the "cans". She will do all of these things- when she is ready. It takes her a bit longer to learn certain things academically...and behaviorally (thus the problem with nursery), but she WILL get there. In the meantime- we focus on what she can do now. (And believe me- she has her very own unique set of skills. I think I might hire her to dress the family. Girl has got style...and possibly an 80s style workout DVD (-;)
And when she does accomplish the things she works extra long and hard to get- it is ALL her, baby. She is a rock star. We may be stuck between baby and child in certain areas, there may no longer be a nursery category for her at church, we maybe repeating kindergarten (maybe)- but my baby girl Addison is a TOTAL rock star. And I am proud of her.

It's not about achievements. Worth isn't valued by accomplishments. Value isn't tallied by "she can"s.

I am proud of Addison because she is my girl. She takes her skills, and she works hard to push herself forward. She comes at life with her own view, own opinions, and own agenda. She adds value by just being Addison. She doesn't need to earn it. She certainly doesn't need to prove it. And just because there isn't a "WOW LOOK WHAT SHE CAN DO EVEN THOUGH SHE HAS DOWN SYNDROME" story about her floating around facebook- her life is priceless. She is worth is all. She holds the highest value possible- she is a person. Her very own person that I am privileged to call my daughter.

Because when others may see "runs away and hides in the men's restroom" I see this as her way to communicate something like- hey, she has to go potty but maybe had a hard time communicating this. Bad behavior equals communication in the Addison game more often than not. And you have to be listening/watching carefully or else you miss what she has to say.

This is the point when "getting" her takes more work- more creativity- more getting down eye level to her and looking inside to see what is there, not what we think should be there.

And it is worth it. Oh it is worth it.

Difference isn't always "cute baby smiling on facebook plastered with a motivational meme". Difference is sometimes a little girl acting out- against your friend's kids (omg!)- because communication is too hard. And these moments- struggling through them- learning from them- these are the moments where the motivational memes could draw some inspiration. Difference is a 6 year old with more potty accidents than her 4 year old brother. Difference is crossed eyes even after surgery and driving a million hours for specialists appointments. Difference is sometimes awkward and messy and doesn't fit inside any mold.

But at the same time- difference is beautiful. Breathtaking. Complex. Fabulous. Because it isn't a label. It is a person. A beautiful person working hard to make her own way through this tough world.

A beautiful person I am proud to cheer for.

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