About That World Down Syndrome Day....

March 21, 2018

 

I think every parent of a child with Down syndrome views WDSD in a different way.  My own personal opinion is probably unpopular.  Some readers will be in tears because *finally* someone else understands them and isn't afraid to verbalize their own reality.   Other parents will gasp in horror and offense, but only because they themselves are not living with the same behavioral challenges that many of us do.  This exposes a deep divide within the Down syndrome community that really shouldn't exist.   That is why I'm posting today...not to shame anyone, but with two goals in mind:

 

1) I respectfully request that individual parents, whose Down syndrome lives might be rosy, at least acknowledge the reality of other families.  Families of dual-diagnosis Down syndrome/Autism/ADHD/SPD/PDD-NOS/PTSD/Elopement simply do not live the same life you do.  Be mindful that we DO discipline our children, with unending effort that often yields little positive progress.  Be mindful that sometimes full mainstream inclusion is NOT the "least restrictive environment" for OUR child.  It is my responsibility to determine that, as his mother.  It is not yours.   Even with your best intentions, no one gets to assume that because my child is in a self-contained classroom, or, God forbid, a separate school entirely, that I did not demand enough of the county school system.  It does not mean I didn't utilize all of the legal tools available to me, nor  does it in any way suggest that I am ignorant.   It doesn't mean that I'm weak, or that I caved.  It means I have had to face a painful truth about MY child's needs that maybe you've never had to face.   Grateful as I am that the supports exist for my son, I am still left with guilt, shame, sadness , and a feeling of complete failure that he has to struggle this way at all.  Judging and shaming other Down syndrome parents, even if you don't mean to be hurtful, is still judging and shaming.   

 

2) I invite every Down syndrome support group (DSA) nationwide (and in Canada), including NDSC and NDSS,  to better acknowledge the spectrum that Down syndrome really presents.  High functioning and lower functioning are real, no matter how PC our culture has become.   "Born This Way" is inspiring, but it does not represent the vast majority of ability for people living with Down syndrome.  I  encourage you to embrace the value and need for self-care and respite for many of your own local members, and to partner with A Mother's Rest to offer financial support to your members to be able to participate in local retreat opportunities.

 

I really do understand the reason and value of WDSD for an advocacy and awareness purpose.  It is vastly important for the outside world to know that we love our children, they are not suffering, and they are capable of much more than most of society believes or cares about.  But it's really only BECAUSE of public ignorance, disdain, and indifference, and a culture obsessed with convenience over dignity of life, that we even need to have this "special day" at all.  We make a huge deal of our kids because the world thinks they aren't worthy of it.    I LOVE the enthusiasm with which everyone in the Down syndrome community rocks this day, rocks their socks, rocks their extra chromosome....but I still wish we didn't have to.   

 

I participate in this day, and promote this day, in *support* of and to *honor* people and families living with Down syndrome.  But I don't celebrate Down syndrome itself.   I don't celebrate the fact that my child is disabled.  I don't celebrate that which keeps him from achieving all that any parent hopes for their child. I don't celebrate that which causes him such frustration, isolation, and anxiety.  I don't celebrate that which causes him to have no concept of danger, that which causes him to take off running into the street and climb out windows.   I don't celebrate that which causes him to struggle with real friendship, to communicate clearly, or to function safely in public. 

 

I have to spend every waking second pushing Reece to the forefront, demanding that people see and value everything he CAN do.  Despite his challenges and behaviors, he is WORTHY OF LIFE.  He is worthy of friendship.  He is worthy of happiness.  He is worthy.

 

I celebrate Reece every day,  I celebrate his brother Owen every day.  I celebrate them, share them, teach them, do things with them, love them, discipline them, provide for them, because they are my children.  Reece has Down syndrome, Owen does not.   I don't love Reece more than I love Owen.   Reece requires more of me than Owen does, which often results in Owen feeling left out and saying things like "Sorry I even exist!"   :(   I don't really need a special day to make a fuss over Reece because he gets my loving fussing every day.  If anything, OWEN needs a special day.  (see our Mommy & Me trips)  But I'll show up to the party with my crazy socks because ALL OF THEM ARE WORTHY.  

 

 

 

I spent eleven years advocating for the lives of orphans with Down syndrome, that they might grow up in loving families and be spared true suffering in foreign orphanages.    I did so because they needed a voice to fight for them.  I did so because the world hides them away in orphanages and mental institutions simply because of their Trisomy 21.  They are WORTHY OF LIFE.  My son is worthy of life.  www.reecesrainbow.org

 

Now I spend my time advocating for proactive self-care and respite for the PARENTS raising these children.   They are cute and squishy as littles, but it gets harder as they grow older.   It's harder as WE grow older.  I know for a fact that parents can cope better (and longer), physically, mentally, and emotionally, when they are well rested and have quiet time to look forward to.   I know that the intrinsic value of  having a safe place to speak your raw fears and feelings out loud to others who really understand can not be measured.    That is how we as moms (primary caregivers) can really decompress....having just a little time completely away, in the intimate fellowship of others who get it, and being able to cry it out and let it go so we can pull up our panties and go again when we get home. 

 

I understand the importance of REST:  restoration, renewal, rejuvenation, recuperation. It sure would have helped me over these last 16 years, instead of being overwhelmed by grief and  struggle, and the 24/7 ON we endure with Reece's impulse control issues and running away.   It's time that every DSA in America and Canada more openly acknowledges and offers tangible, financial support for those parents who really need this respite so they can best care for themselves and their children.   Too many multi-diagnosis families self-isolate because they recognize their kids just don't fit into the "just Down syndrome" world.  Auntie says "no more!"  AMR is growing our retreat calendar nationwide every week, and we can help you organize your own local retreat for your own parents.  

 

Not in any way am I asking you to curb your enthusiasm or change your advocacy mechanisms!  Secretly, I'm probably a little jealous that your child can speak intelligibly, or won't disappear if you turn your back.  I am thrilled that you are HAPPY.  All I ask (and probably most of us) is to not be judged just because I'm sad or stressed sometimes.  

 

*** If you are the President or Executive Director of a local Down Syndrome Association (or ANY diagnosis support group), and you'd like to partner with A Mother's Rest to financially support your own members' respite retreats, please contact me at innkeeper@amothersrest.org.  Even just setting $1000 a year aside in your organizational budget, specifically for respite grants, speaks volumes about your inclusion of those families***

 

***If you're a business owner, a foundation director, a church pastor, a private philanthropist...consider SPONSORING our General Fund and/or one of our scheduled events.  If we share the costs, we offer parents the blessing of respite and fellowship without the financial burden.  ***

 

 

 

Love and hugs to EVERY Down syndrome mama, struggling or not, today and every day!!! 

 

Andrea

 

 

 

  

 

 

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