Monday, September 22, 2014

Our Elopement Safety Plan

I've been going back and forth on Facebook trying to explain in short answers how we TRY to keep Chloe safe from bolting, eloping, running, escaping, etc., etc.  So I thought I'd make it easier on everyone and lay out our Current Chloe Safety Plan.
First and foremost, we are VERY lucky to live in a town that has just implemented the Project Lifesaver Program which has outfitted 6-year-old daughter with Down syndrome, Chloe, with a radio transmitter bracelet which she wears on her ankle.  IF she were to get out AND get lost the police and the first responders in our town are trained to respond IMMEDIATELY and can locate her from up to a mile away.  As I mentioned, it is a radio transmitter so it works when GPS signals might fail (like in the woods, or in water, God forbid!)  Chloe HATES wearing bracelets, but the officer was wonderful about introducing it to her and she wears it without a problem.  It never comes off - she wears it in the tub and swimming, as it's fully waterproof.  She can decorate it if she wants, but she prefers to sort of pretend it isn't there.  She doesn't want any attention drawn to it.  It's just there.  (Or "isn't" in her mind).  Here's a pic from the my last post "Reality Bites" which I also recommend, as it talks about the scary reality of having a bolter!  I will also be looking into adding the PAL system through Project Lifesaver which I believe is a GPS system.  It would be nice to have both systems in place in case one doesn't work as well as the other.  
Next in our plan was to work our state Department of Developmental Services and our local school through Chloe's IEP.  We have 2 BCBA's on board (Board Certified Behavior Analyst) one from DDS and one from the school district.  Together we have created an additional safety plan including the following:
  • focus on teaching Chloe the verbal cue "STOP!"  This cannot be done with a game because that confuses Chloe who already thinks running off IS a game.  It is very serious and when she hears "STOP!" she must learn to STOP immediately without hesitation.  We also discussed using a different word, but determined "stop" is the word everyone will know (including strangers) so we want her to respond to anyone's STOP
  • focus on increasing SAFETY AWARENESS - including but not limited to - stopping at curbs and stop signs; learning full name, address and phone; stopping and listening to adults
  • the addition of visual cues at home - Chloe likes to read signs so we have a sign by each exterior door with simple instructions and coinciding pictures to give her cues.  A large plain "STOP" sign can also be used
  • we have installed hooks and latches up out of her reach on all exterior doors
  • the main exit door has a very loud door chime on it which we can hear throughout the house - we are all VERY cued into it so if we hear it we immediately take a role call and do a status check of Chloe's exact whereabouts
  • When in public we TRY to use a stroller or monkey backpack, but now that she's 6 she is much more resistant to these things and prefers some independence.   We try to double team her, keep her brightly clothed and don't ever let her get more than a step ahead.
  • On vacations or away from home for extended periods we "assign" Chloe times so we KNOW who is responsible for that time period and make a clear designation if we are to reassign responsibility.  That way there is no confusion about who should be watching her.  
I think that covers most everything we've got in place right now.  Oh, we have looked into a service dog as well, however with our family already having 2 dogs we think it would be a little too much for us now, however it is never completely ruled out.  It's my understanding they can be trained to stay with your child at all times (possibly herd your child home or stay with them until they are found and much more!)  Please feel free to leave a comment with questions.  Good luck out there to all my fellow escapee parents.
The Gatekeeper ;)

Sunday, July 6, 2014

Reality Bites

Remember that 1990’s movie about love and relationships?  The trials and tribulations of older adolescence.  It seems life was so simple then.  Not to mention with an awesome soundtrack!  Now, not to say adolescence is simple, by any means, but I guess compared to the realities of adulthood and PARENTHOOD, life does seem a bit more. . . complicated now.  Where is this all coming from, you might be wondering.  Well, in short, life with Chloe.  That sounds negative and I don’t mean it that way, so let me explain.

A few weeks ago, Chloe was outfitted with a new radio transmitter registered with the local police department as part of the Project Lifesaver program.  It’s been in the works for weeks now, probably more like months, but finally, she is donning her newest accessory – a waterproof bracelet/anklet worn around her ankle that contains a radio transmitter in the event she gets lost.  That’s where the reality part comes in.  I posted a picture of Chloe’s new jewelry on Facebook and was showered with “wow’s” and “that’s great” and “what a relief”.  But that wasn’t the REALITY of it.  The reality of it is that this is just a small tiny Band-Aid on the bigger problem.  Chloe is an escape artist.  AND a runner.  And Chloe has little to no sense of road safety or water safety.  And being outfitted with this new transmitter not only made me realize the reality of her escaping, but also the realization of the limitations of what this small device can provide.  And that, my friends, is quite daunting.  The REALITY is if she gets out she could die.  Period.  Before we even have a chance to call the police to search for her she could be hit by a car on our very busy street or drown in water she eagerly wants to jump into.  This is our reality and quite frankly, it bites.

I don’t mean to be such a downer.  I like my posts to be upbeat and motivating, because that’s generally how I feel when I’m thinking of Chloe.  But there is another side to that optimistic side of things.  The other day at work I was telling someone about my three children and as usual I said “and then I have a 5 year old girl who has Down syndrome”.  For the first time in a LONG time I got a “gasped” response, followed by “oh no’s” and “I’m so sorry!”  “That’s so awful” and on and on.  “No! No!” I assured her.  “We love her!  She is true delight!  We feel blessed to have her and couldn’t imagine her any other way” clearly reassuring her it would be okay, as if I were reassuring a new mother who had just received the news herself.  And I did mean EVERY SINGLE WORD OF IT!  We can’t imagine our lives without Chloe or who Chloe would be without Down syndrome.  We embrace her for who she is.  We celebrate her. 

But that doesn’t change the reality that EVERY SINGLE DAY we live with the added fear that we could lose her.  All parents know this feeling.  When you experience the love such as that of a parent for a child you can’t help but fear even the unrealistic.  The unreasonable.  But for us, that fear is a little more real.  The chances that something horribly tragic could happen are higher with our special kiddos who run, misunderstand danger, or who have special medical needs.  And some days it gets me.  It holds onto me and squeezes me until my breath is taken.  And I gasp, almost as if there is no air left in the world, only to realize there is.  Today is NOT the day we will lose Chloe for good, and hopefully that day will not come for a very long long long time.

If you’re wondering how we get up each day and live in this shroud of fear and doubt.  Well, the answer is because we have to.  In order to give all our kids the lives they deserve we must let some of the realities of what can be and live in the moment.  The “I want to dance barefoot in the rain” moment that reminds us that we must LIVE while we can for someday, as with all of us, we will lose that luxury and when we do we want to be able to say, it was a good life that we lived afterall.

Monday, March 17, 2014


Sadie with a pregnant mommy
When I was about 19 weeks pregnant, just moments after the shock wore off from discovering I was having a girl (when I was 99% sure it was a boy, so much for that mother’s intuition), I learned that our baby would probably have Down syndrome and for sure would have a significant heart defect.  Our initial reaction was of course one of complete and utter shock.  My heart ached and my eyes filled with tears as we grappled with the thought that our baby might not even make it to birth.  And if she did, would she survive?  Would she be able to live a healthy, active life or would she be a sickly child we would have to sit by and watch slowly die.  These and many other thoughts filled our hearts and minds as we held onto each other and cried.  And feared. . . and hoped. 

After my mom escorted my son out of the room, my husband and I were left alone with our thoughts.  Decisions had to be made.  Did we WANT to know if she had Down syndrome?  Or maybe some other more life threatening disorder.  We were already wondering if she was going to live and Down syndrome was the LEAST of our worries.  But we were worried there were other more predominant issues to deal with and worried there might be something that could put my life at risk.  So after great deliberation we went with an amnio. . . just so we would “know”.
We spent the next few days wondering if our baby would survive to be born. . . live to see subsequent birthdays.  At this point we just wanted to hear our baby would live.  The baby we had grown to love already.  We just wanted her to LIVE.  Once we finally got into the see the cardiac specialists it was clear that our sweet baby WOULD live and likely thrive, after one, maybe two open heart surgeries.  With rough hand drawings and stories of great strides in medicine our greatest fears of death were alleviated.  We were elated.  But now we were faced with the reality that although she would likely live a healthy life, she DID have a significant heart defect that would require major open heart surgery and she DID have Down syndrome.
Drawing of a "normal heart"
A heart with AVSD - Chloe's condition

My heart once again ACHED as I wondered what all that would mean.  Especially the Down syndrome.  What would she be like???  What would she LOOK like???  Would her mouth droop?  Would her tongue hang out?  Would she talk “right”?  Would people stare?  Doubts, fears, anxiety all filled my mind.  All the many questions that swirled through my head overwhelmed me.  I remember feeling as if someone had picked up my house and shook it upside down and around and around and left me, sitting there alone, in the middle of it all. 

My dreams for her were gone.  She wouldn’t be “normal” so what could I dream for her anyway.  And slowly, ever so slowly, I began to realize that first off, she would be alive.  That was our first dream.  Then it became ever so evident to me that although she WOULD be different in some ways, so are all kids.  It’s really the fact that she is so ALIKE a group of people who all have Down syndrome, not that she is so different.  And then came some serious self reflection. . . what WERE my dreams for my kids anyway?  Fame?  Fortune?  Great success?  Um, those that know me know those aren’t MY dreams.  My dreams are for happiness.  Real, pure happiness in whatever that means for each individual.  To be a good friend, a good citizen and to care for others.  So what about those dreams couldn’t be true for our new baby who just happens to have Down syndrome and a heart condition?  You got it. . . NOTHING.

Don’t get me wrong.  As I’ve said before this is a process.  A loss, of sorts, that we must grieve.  But once your realize that your child is still YOUR child and will have incredible dreams of their own, because yes, they are in fact individuals!  And the greatest dream we can have is for happiness, not defined by us, or others, but by the person who experiences it.  
And by the way, yes people stare sometimes, yes her mouth droops and yes, her tongue sticks out, but I think she's beautiful and worth it.  Her imperfections make her who she is!

Friday, March 14, 2014

Celebrating World Down Syndrome Day 2014

First off I HAVE to share this video with everyone who knows Chloe or knows OF Chloe.  It made me cry and I think it’s amazing!

So this blog post will be dedicated to Chloe and her biggest cheerleaders Xander and Sadie, in honor of WDSD which takes place on March 21st every year.  Get it???? 3/21. . . . wait for it. . .  Trisomy 21 the official medical term for Down syndrome.  I know, cute right?  Anyway, let’s talk kids.  Mine, of course, cause it’s my blog (hee hee).  I haven’t done a general update in awhile so here goes:

CHLOE has been a busy little beaver.  Which in turn means so have the rest of us!  But what else is new!  I was shocked at my most recent teacher meeting when she showed me the book Chloe was reading.  Yes, I said it R-E-A-D-I-N-G!  Not “reading” like I thought, where she points her fingers at words and talks along in gibberish as she goes, but actual word recognition reading!  wooo hooooo!  Now that’s a milestone I wasn’t even quite expecting yet.  What a pleasant surprise.  She’s also talking in FULL, sometimes long sentences!  Not always, but every now and then she comes out with a wowzer!  Like “Mom, can you stop doing that?!”  (probably when I’m singing or dancing).  She’s got a new i-Pad that we’ll be using to help her communicate because although she can speak in full sentences at times, at other times the words just escape her and frustration bleeds into her sweet little eyes.    Chloe’s also toilet training and has been for what seems like months!  She’s so darn close.  Close, but yet so far. . .  Chloe loves to sing and dance with Sadie, play floor hockey with Xander, watch movies and act them out, play with her Playmobil people and her cars.  She is full of spunk and zest, but a full on love.  I find if I’m getting frustrated with her if I can get her to laugh, we’ll all be okay!  Lastly, she’s been busy doing gymnastics (or should I say Max her shadow has been busy chasing her during gymnastics!)  I think that covers Chloe in a nut shell.  Oh, I forgot the medical update. . . we’re trying to wean her off her thyroid meds and heart meds and could potentially have her MED FREE by the end of April.  I get VERY emotional when I think about this as it seem like the end of a very medically dominated era.  I’ll keep y’all posted.

AND as if all this isn’t enough, Chloe has taken to RUNNING out of the house.  We’ve gone into lock down, but mistakes happen and she has gotten out and gone missing, although only briefly, several times.  One time she was seen bolting out into our busy street without even glancing for cars or hesitating.  We were sooooo lucky!!!!  We will be putting this in the forefront now that the warm weather is returning and will be working with our local police department to get her hooked up with Project Lifesaver, a tracking program for people with disabilities.  We’re also working with the Department of Disability Services and the school to come up with some behavior plans to help prevent bolting.  It’s a very scary prospect!

SADIE SADIE SADIE.  What can one say about Sadie.  The poor middle child, sandwiched between two very high maintenance siblings.  And a drama queen in her own right.  Well, she’s been struggling a little with her place and has expressed the feelings of being left out so we’ve made a real effort to give her some special extra attention, her school is hooking her up with a mentor and I’m enrolling her in a program called SibShops, just for siblings of kids with disabilities.  She’s looking forward to both!  She’s also taking gymnastics with Chloe, doing well in school and growing like a weed!  She LOVES to play school, experiment, dance and be silly and do “fashion”.  I fear the day when we can fit in the same clothes!  Although I guess that means I get to steal from her closet too ;)  Sadie’s had two bouts of strep but otherwise is healthy.  No specialists for her.  She is such a great sister to both Chloe and Xander. 

XANDER MAN!  Last but not least.  He’s 13.  Yes, 5 years from 18. . . 3 years from being able to drive.  1 ½ years from high school.  And I know all this because he’s been sure to point it out to me!  He loves toying with me and reminding me he is growing up!  AND  UP AND UP.  Every week he likes to point out how far above my head he’s gotten.  Last count 5’5” and growing.  He’s a beanpole though.  95lbs soaking wet.  He’s definitely working to find himself out, but he, like his other sibs, is a strong part of the family.  He’s working VERY hard in school and hockey and LOVES playing video games.  He’s still interested in medicine (has been since he was 2), but also takes some interest in the military.  He’s a family guy for sure, heading down to VA to visit his Great Nana who he loves very much.

Stacey and I are doing well.  22 years together and 19 years married.  wowzers!  And still going strong.  He’s gearing up for the spring season at work and I’m about to take on an increased caseload at my job (hence the early WDSD post).  We’re ready for spring for sure!  It’s been a LONG and stressful winter.

Monday, February 24, 2014

Life with a Child with Special Needs: One Parent's Perspective

I’ve been thinking a lot about what it’s like to be a parent and particularly a parent of a child with special needs.  A friend of mine recently posted on Facebook about how hard it is and how defeated she felt.  And that got me thinking even more.  My husband hates when I think . . . sorry honey, I’m going to do my best to put my thoughts and feelings into words on paper.  So here goes.

I’ve been feeling pretty darn good lately about things, particularly my ability to parent a child, and now 2 children, with special needs.  No, we didn’t adopt, we have just uncovered some new diagnoses in my eldest.  (See previous post).  Anyway, I have to admit, I was maybe even feeling a little high and mighty.   Still overwhelmed for sure, but most importantly able to fully (or so I thought) “accept” and “embrace” their “special needs”.  But as I’ve delved into my own psyche a little further, I think in truth, that having a child with special needs is a daily. . . well, I don’t want to say struggle. . . how about “daily process”.  Yes, that is more fitting.  I personally, at least, THINK about the fact that my children have special needs daily.  But lately, I’ve been quickly able to calm my, shall we say “doubts”, with thoughts of acceptance.  For example, each day when I have to open a gate so I can go upstairs just because my 5 year old would take off upstairs and get into great mischief, I think, however briefly, “ugh, if she didn’t have special needs, Down syndrome specifically, I wouldn’t have to have these damn gates all over my house”.  But then I quickly catch myself and turn it around and remember that I love Chloe for who she IS and really wouldn’t want to change her because then she wouldn’t be Chloe, with all her joys and wonder.  I am able to quickly accept and embrace her. 

After reading my friend’s post my first reaction was “Oh I feel so sorry for her, that she’s not where I am.”  But the more I thought about it the more I realized it’s not that she’s not where I am. . . as I am often there too, rather she is just in one of the many valleys we as parents, and even more so parents of children with special needs, experience all through our children’s lives.  Peaks and valleys.  The acceptance and embracing of them is ALWAYS there, it’s just sometimes harder to access.  Sometimes we feel defeated.  And that is OK.  In fact, it’s more than OK, it’s normal and healthy and all part of the process. 

I recently revisited some past blogs of my own, particularly one about admitting I didn’t like Down syndrome and then a follow-up about being “back on the Ds train”.  I think my own somewhat adverse response to my friend’s post was my own defense against those hard-to-face feelings that we all experience at one time or another.  Those defeating, overwhelming, what-the-hell-have-I-gotten-myself-into feelings. . .and my words to her may have seemed trite, but I stand by them. . . “This too shall pass”.  Granted, that doesn’t make it any easier when you’re going through it, but maybe just to offer a glimmer of hope that this really is just a phase.  Not just for the kids, but for us.  Just a valley that WILL once again lead to a peak.

So in closing, what IS life like as a parent with a child or children with special needs?  Well, it’s just like that of being a parent of ANY child.  It is just often magnified with greater and longer experiences of those peaks and valleys.  We just have to remind ourselves that although the lows may be lower, the highs are often higher!  And to meet our children, like ALL children, where they ARE and NOT where we want them to be.  If we can remind ourselves of this, we will once again be able to see the joys in what they CAN do. . . and not be focused on what they can’t.  But like many things this is a daily and ongoing process.  Hey, what doesn’t kill us makes us stronger, right?!