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?!

We've Been Busy

Easter 2013 with Nana behind the camera!  And Sadie is wearing costume glasses.  It's a fashion thing. . .

JFS.  CBC.  TSH.  T4. PPTs.  504.  IEP.  ADHD.  IQ.  DCIS.   Those are just a few of the acronyms that seem to define our lives lately.  What do they stand for?  Work and life, in a nut shell. 

I’ve been so busy I could hardly justify sitting and updating the blog AND my Outlook email isn’t working so I’m unable to send out my bulk email to let everyone know I’ve finally updated the blog, which I’m just sure no one checks it anymore!  So there are my big excuses for not blogging.  Unfortunately it isn’t for lack of things to write about. 

So where to begin is my big question now . . . I guess we’ll go youngest to oldest.  So let’s talk about Chloe.  Once again, Chloe is being Chloe.  What does that mean?  Well for those of you who follow along you’ll understand what I mean, but for those of you who are new to the blog let me explain. . . that basically means she’s giving us drama, but in the end we’re confident it will all work out. 

First of all, a little back story. . . back in March Chloe had to increase her thyroid medication and while getting that lab work also got her annual CBC done which came back slightly abnormal sending us to Yale Smillow Cancer Hospital for a Hematology/Oncology consult.  For those not that familiar with Down syndrome, kids with Ds are at higher risk for developing leukemia than “normal” kiddos, so an abnormal reading calls for a manual read by a cancer specialist.  So off we went to Smillow where we were ultimately told that she is fine. . . we’ll do occasional CBC’s if she’s getting stuck for something else so she doesn’t have to have unnecessary blood draws.

So about 3 weeks ago Chloe collided with another child at school and had a pretty serious nose bleed.  The nurse warned me it might bleed some more that night.  Well, at home, it was a Friday night, she had two fairly significant bleeds (I’ll spare you the gory details, and believe me there were some).  I called the doc Saturday morning and got instructions on how to handle the bleeds and when to consider it in need of further intervention and of course she had no more bleeds.  Come Tuesday afternoon I noticed a few drops on her shirt and some dried blood in her nose.  I wrote a note to the school and low and behold she had a 20 minute nose bleed on Tuesday and they neglected to notify ME or the NURSE!  Oops!  I don’t remember the exact timeline, but she had another big nose bleed in the middle of the night all over her sheets and a few more medium to big ones at home, so we took her in to see the ENT.  Didn’t appear broken, and they recommended saline spray and antibiotic ointment in her nose to help it heal and sure enough that did the trick.  Shortly thereafter I started noticing easy bruising and red spotting type bruises that seem to appear and go away fairly quickly.  Since she was due for her thyroid screen and they were going to stick her anyway, it seemed appropriate to get another CBC.  So here we are with another “abnormal” CBC, in fact exactly the same as last time.  They’re seeing us to do a manual count again, which we expect to be fine and then to devise a plan on how to monitor her going forward, including establishing a new “baseline” for her.  We really aren’t too worried. 

***UPDATE***Chloe waiting for her blood draw today at Hematology/Oncology where everything looks GREAT!!!!!!

Since starting this post I have a new story to add. . . don’t worry, I’ll be brief.  After returning home from an awesome Open Playgroup with friends Chloe was headed outside to see her daddy and was at the top of our wooden deck stairs, when our beastly black lab mix “puppy” barreled right past her sending her cart wheeling in a dramatic fashion, all the way down the stairs.  Stacey (her dad) and I watched helplessly.  It was so dramatic my instant reaction was to just call 911, but after sitting with her for a minute, I realized that was unnecessary.  About 20 minutes later an atypical midday nap warranted a call to the doc, but we determined she was fine.  So aside from my bumps, bruises and scrapes, she came out of it ok.  sigh.

Sadie’s our “stable” one (ha ha – that says a lot about our family. . . tee hee).  Aside from a badly bruised ear and a swollen cheek bone (two separate incidents), she’s been keeping me somewhat sane.  Don’t get me wrong, she has her moments, like everyone, but for the most part she’s in a REALLY good place.  (knock on wood).  She’s into fashion and playing with friends and listening to music. . . and that about sums her up.

Before Xander's band concert - he plays drums!

Then there’s Xander.  Xander is a very long story, which because of his age, I will avoid the in-depth details.  Falling grades, psycho-education assessments, and doctor appointments have led to the understanding that Xander is VERY bright, YET has an extremely discrepant Processing Speed.  There is some dispute as to whether he has a learning disability (between our pedi and his therapist who both feel strongly that he does and the school who does not) so we are left fighting to help Xander be understood better and to get him the services he so desperately needs.  Aside from school Xander is playing spring hockey and enjoys video games and hangin’ with friends.

 

Stacey and I are busy busy busy.  Between work and spring duties, and getting the kids to their many appointments and coordinating and advocating we are just trying to get through.  Stacey and I survived another spring work season, meaning he’s back to working 5-days a week instead of 6.  This leaves us with a whole extra day to get things done. WOW.  I’m stressing with all the work I’m doing and trying to coordinate the care for my kids, but I do LOVE my job and find solace in having something that is my own outside the home, that I feel passionate about.  I am lucky to have found such a perfect fit for me.

Nana and Xander after hockey.

Last but certainly not least is my mom.  She’s doing really well, considering she was diagnosed with Ductal Carcinoma In Situ (AKA -  DCIS) which is a VERY treatable, non-spreadable form of breast cancer.  She has had the offending calcifications and lesion removed and will undergo 6 weeks of radiation and then a possible follow-up treatment afterwards, but that should be it.  No chemo and we expect a full recovery. 

So I think that covers everyone – for the most part anyway.  This is what happens when I don’t update for awhile.  So much to say. . . will update after our Hem/Oc appointment. . .