1.11.2012

Insight into the Daily

Recently, I've been thinking alot about this blog.  About why I write (so when I'm in a nursing home someday & finally getting around to printing out the pictures, I can remember what on earth happened in our days) and why I publish it publicly (was convicted in Dec 2009 about sharing our story - John 9)
And I've thought about what direction I want it to go & how vulnerable I want to be here.
I've considered what the implications may be for my children.
And I should tell you that I try to be very cautious about what I share.  I don't share every little detail of our lives.  And my kids don't really have much of a clue about the internet but someday they will.  And when they understand more about this blog, I want them to always feel loved and respected and cherished.  
So, I don't share every heartache or struggle or challenge.
And those that I share, I am careful to make sure my child's trust in me is not betrayed - I try to envision if he would be okay years from now reading my words.  
Because at some point, this will become their story to tell and I will take a backseat.

And I've thought about what I want to share here.  Primarily, I do this blog as a way to keep track of our days.  I'm not a scrap-booker although I've tried (& failed.  Miserably.)  I love pictures but I get so far behind about getting them printed out and put into albums.  (Last batch I did was July 2010.)
Way behind.
I still haven't printed this out but at least it's fairly (kind of) organized and in one place and assuming this internet thing catches on and stays around for awhile, I figure its a safe place & when I have time, I'll print it out and call that our family scrap book.

But there are times when it is more of a journal.
There are times I don't just share pictures and words about our weekends.
There are times I share my heart and our struggles and our triumphs.
And when I do that, I find community.  I find that I suddenly receive emails and messages from other moms out there - moms whose pregnancies are in crisis with a baby diagnosed with a syndrome and I'm honored to walk alongside them, to talk to them as they are far away in another state but our hearts - they understand the fear and the pain.  I find a mom suddenly nearby and I'm honored to take her meals on doctor days because someone did that once for me.  I find I'm told countless stories through these emails - about children and babies and I get to pray for families and what an honor to connect in some way - simply because I poured my heart out one day.

So I'm not sure where I'm going with this blog.
This is the longest intro ever.

I don't want it to just be a "happy go lucky life is perfect all the time and my house is spotless" blog.
My house is not spotless.
Nor is life happy go lucky all the time.
Though it is pretty much perfect (though not as the world might define that.)
It's perfect for me.

Yet, I also don't want to be labeled a "special needs" blog and only talk about my kids' differences or our challenges or how we handle therapies and doctors.  There are plenty of blogs out there that do that well.  But I don't want that to be my sole purpose.

Having differences - it is a part our life.  It is our normal.
But, I hope, through showing pictures of us just doing life - riding horses or playing pretend or doing a craft or whatever it is we do... that maybe this too can encourage someone.  That on those dark days when a new mom feels like she will never know "normal" again as she faces a crisis or diagnosis for a child - it is my hope that she will know hope as she sees us just doing our "normal."  That it would be evident here that we are a family and we do regular family things.

Recently, R and I were talking about the one thing we wished our friends and family and total strangers really could understand about us.
And we both agreed on that one thing.
We both wished everyone around us could understand that there is extra thought and creativity that goes into almost every single decision or action we take.  Very few things are just simple for us.
We also both agreed that unless someone lives in our family or home for awhile, that no matter how we try to explain it, we can't.

But I thought I might try today.
I've been thinking about how having two children with differences has affected our normal.

Recently, we bought a car.  R's car was pretty old and needed some repairs and he didn't feel that was wise to invest so much money into an older car.
So we began to talk about our family's needs.
And ultimately, we determined that we needed a minivan.  We want to offer our kids "normal."  And normal is kids opening the car door themselves to let themselves out at school.  For Will, for now, this isn't working with a traditional car handle.  But, he can push a button on the minivan and the door opens ... and he is just like every other kid in the carpool lane for a moment.

(Although he was so excited at school last week to show off his new skillz - and then he promptly tumbled.  His backpack throws him off balance.  If he were 12, he would have been mortified!)

 And Ellie?  She has a limited range of motion in her joints - which means that stepping up high into a suburban, for instance, would be very difficult for her.  But a minivan is a low step and she is more likely to be able to do that.
And I needed space to put a gait trainer or a walker - along with a stroller or whatever else I may need for any given activity.
So, honestly, there were lots of cars that simply weren't the best option for us in our quest to offer our children independence - to make their lives "normal" as possible.
Because it's not "normal" for a mom to have to lift her 4.5 year old into the car or always open the door for him.  
We've been given a lot of grief about this purchase.  I suppose nothing says "mom" like a minivan.  Except, you know, the fact that I've got the mom hips & extra baby weight still.  Or maybe the fact that I have two little people always with me.  Did I really need the vehicle to confirm that I am, in fact, a mom?
I'm not sure why people are giving us trouble.  We smile and try to be gracious but sometimes I really want to "throw out the disability" card - I want to explain why certain vehicles simply don't meet our unique needs.  And I want to give my kids independence any way I can.

When we searched for a house, I had a total meltdown one day.  I realized how very selfish I was as I fell in love with a two story home.  I began planning how I could make it accessible for my daughter someday with a chair for the stairs, for instance.  
But how selfish of me - I wasn't already in a two story home and having this baby... I was searching for a new home and had the options wide open in front of me.  We consulted with her therapists and with other families on a support group website as I wanted to know what factors I needed to consider to make our home as accessible and safe as possible for our children...
and to allow them "normal" of being safe and able to move throughout our home independently some day.
Recently, Ellie scooted from the dining room to our study - by herself.  It took her about 15 minutes but she did it!
Because we were intentional about finding a home to help meet her needs.

When we plan vacations, we think about accessibility for our children.  Just yesterday, I read on a support group website about a family with a child with limb differences who went to a major theme park.  The mother mentioned that in many of her pictures, she noticed someone in the background staring or pointing at her child.  (Hi, Y!)
Crowds when we travel are a consideration for us.  That's our reality.

As I've faced different issues with Will this year, I've consulted with several moms ahead of me in this journey.  Independently of each other, they have each told me that when their children were Will's age, they were cautious about just taking them somewhere with large crowds - where they knew they would have to face questions/comments/stares, etc.  I've realized that I haven't been so good at protecting Will from this.  A lot of times, I've just expected him to face it but now I'm trying to be more intentional.  I'm paying attention if we pull up to a park and I see lots of big kids, I find a new park.  He deals with enough - I don't want to add to it while he is at a vulnerable age.
Recently, I was making a playdate with a friend and I was tempted to suggest Chick Fil A.  They have good playgrounds and I could sit and visit.  Except that, realistically, I can't.  Ellie is not able to independently play on those playgrounds yet she is a toddler who is not content to be held (and yet she isn't walking.)  And Will always has to face kids who ask questions or bug him or have even grabbed him and hurt him up in those tunnels before.

This week, I have been calling various schools to schedule tours and visits with the principals.  And it shouldn't be but it is hard for me.  It's emotional.  Not just because I am talking about the "K" word.  (Kindergarden.  Makes me sob.)
But because I'm talking to the special needs dept.
And that is ridiculous that I am struggling with this.
Having differences is a part of who my kids are and I adore them.  But I don't want them labeled and I don't want them pulled out from class or to not fit in...
and at the same time I want to make sure their needs are met and that he can use his adaptive scissors and that he may need some breaks when writing.  
It's a fine line for me.
And I'm not just a typical mom going to tour schools.  I'm a mom who will visit with principals and head masters and take pictures of my child so that they can see how cute he is and not just try to imagine what having limb differences means.
There's an extra level of heaviness to what should be simple meetings.

Recently, I pulled my kiddos out of a great program.  I loved it but I realized it wasn't fair to Will to surround him with yet another group of kiddos who don't really know him & I'm not present to intervene and the program is volunteer based and it just isn't best for him in this season right now.  It broke my heart to feel like I needed to pull them out.  In church, I'm about to begin going with Ellie to the nursery for awhile until someone is trained to help her with her gait trainer.  I want her upright like her peers but she can't get in and out of it herself and she requires extra attention.  I did this too with Will when he received his first set of zancos.  But, I anticipate it being a much longer process for Ellie - gait trainer then walker then independently walking but needing help to prevent falls...

I look at playgrounds when we go to churches or schools and wonder if my child can access them.  Or will he tell me when he comes home (as he did recently after a program) that he has to stand by the teacher and watch because it's too hard for him.  Or will I notice that she is the only toddler not toddling and in fact, being held so that she doesn't scoot across grass or roll away?

Late at night, I often research the ADA or other laws to try to understand what my child may be entitled to... and what is there to protect them.  And I try to battle it out in my brain - fighting against a label or a sense of "entitlement" yet wanting to help them get the most out of life.

And there's other things that require more thought:
I can't just join a gym as it doesn't seem fair to toss my children into yet another nursery of new children who will ask questions or point or whatever... and another volunteer or staff person who may not know how to properly help Ellie & meet her needs.
So I sometimes do pilates with Ellie sitting on me,
 and Will doing them beside me.
 (& the kid is good.  He doesn't take breaks & he can do the entire video.  Seriously, he is ripped.  His muscles and sense of balance are amazing (makes sense considering he balances on his heels all day long!)
  • and there are others ways daily life is sometimes affected (though most of these I don't even think about any more - it kind of comes naturally now):
  • choosing foods or cutting things just so so that my child can independently feed himself
  • choosing clothes that fit over her splints or pants that he can pull on and off by himself or pants that will somehow fit him in zancos or without zancos
  • scheduling taping time into a day when we want to swim
  • calculating how much taping supplies I need when traveling
  • find toys that he can operate all by himself - which sometimes means buying different brands of the same basic concept toy to figure out which is easiest for him (nerf guns have been our most recent heartbreaking struggle)
  • find activities that she can do all by herself - because she is becoming an independent toddler in her mind but her body won't cooperate and she becomes frustrated or bored
  • even simple activities for Ellie need supervision - like helping her stand against a coffee table or ride her little toy outside - because the risk of falling is greater for her since she doesn't have the reflexes to catch herself.  So I find that I am sometimes more vigilant with her and stick closer to her.
  • our budgeting - we know we need to calculate what we will spend in therapies (a fortune) & what we will spend in medical expenses (doctors, travel expenses to doctors, equipment)
  • my shopping - today, I'm buying a scooter board because my knees hurt from trying to help Ellie walk in her gait trainer.
Please know that I love our life and I don't want to seem to complain.  Ever.

I just want to provide some insight hopefully - that our reality dictates that in an effort to give our kids and our family as close to a sense of normal as possible, many aspects of life require a little more thought or creativity or effort.
It's not a bad thing.
It just is.

And lately, I've been wondering who I'm really working so hard to convince that this is our normal?  Do I do it to make others more comfortable around us?  Maybe.
Maybe too it's to try to take away some of the challenges my kids face.
I don't know.  

We love our life.  We love our kiddos.  And because of that, we don't mind putting in some extra energy or thought into our decisions and our actions and our activities.  Hopefully, I maybe sort of kind of provided some insight into how having kids with differences does impact the way we live our lives and make our decisions.

Or maybe I lost you in that long intro.  It's highly possible.

(Side note - I am thinking of starting a series.  But I realized in 2011 that I have very little follow through.  So I make zero promises that I will stick to the series. :)
But - am thinking of starting two series- one is a series of posts describing how we do certain tasks... how a child missing feet and with partial hands and a few partial fingers manages to do so much... so any particular activities you would like to see how in the world Will does them?  I think this would be a fun way for me to involve him.  
The other series - I'm speaking several times this spring (yikes!!) and thought I might break down my topics into shorter posts - one on how to teach your children about those who are different & the other on how to be a friend to friends in crisis...)
So here's my question (s)- would this interest you to read?  Any things you would like to see how Will does?  Any topics you are interested in knowing more about?)

Thanks for reading.  I'm always surprised when I receive an email or someone says they read this thing - so, really, thank you!

11 thoughts:

bb2e0272-3c9b-11e1-96bf-000bcdcb2996 said...

I truly appreciate your blog and thoughts on your journey. I have a sister that has differences of her own. I also chose to become an educator, one that works with children with differences. I'd encourage you to meet with the school teachers, OTs, PTs, etc. It can be a daunting thing when developing a plan for your child's academic day. It will be difficult to let your kids find their own way. And in all honesty, not every program is stellar. But if I can encourage you concerning school, let me say this - your children will figure it out, and they will be ok. Other kids will say mean things and it will hurt them, they will encounter teachers that don't care as much as they should, sometimes it will seem like you are fighting a system, and it will exhaust you. But you will also encounter the greatest kindness, the teacher that will so deeply want your children to soar, and staff to cheer you along. You are in my prayers in this very specific area.

Mike and Christie said...

Thanks a lot for making me cry and bringing back old memories of school. :)

After reading this, I realized that this has been my life since I was 22 years old and our son had a brain hemmhorrage that would change all of our lives. We added our girls with limb difference and arthrogryposis and restrictive band syndrome later, by choice. :)
OR should I say, We had no choice, they are God's calling on our lives and we are so VERY THANKFUL for each and every day... but that does not make the days easy or the choices easy.
Last night I was looking at Great Wolf Lodge once again, seeing if we had enough to go this year for a mini vacation. And as I was thinking back, I started looking at "off days" so it wouldn't be crowded and the girls wouldn't be surrounded by gawkers. UGH

I hope you have better success with the schools than I did. We pulled out when Tim was 11. We REALLY TRIED... but they had him labeled from day one.
So, even though his is a Certified teacher and able to teach from K-12, according to the schools he was retarded and unable to learn.
If we hadn't pulled him out to home educate him, he would have fallen for it. He was borderline depressed at 11 because of all the kids who daily made fun of him, bullied him, teased him, and teachers who actually JOINED in.

I don't say this to depress you, or discourage you, but to let you know the realities that Will and Ellie may face.

We chose not to put our girls in that situation, because frankly, I know of NO ADULT who could face such a situation in the work place and move up and not quit or look for another work place.

That is a sad reality.

We have a mini van too, and Erika is almost too tall to get in the back. She fits in the front, so we take 2 cars to church, or I get in the back. Because she doesn't bend it is really hard. She can still barely squeeze in, but I think we are at the end of that. I am trying to figure out what vehicle to look for that is taller inside, lower to the ground, and affordable.

Your babies are so adorable, and it hurts GREATLY to feel that they will face the wolves of the world. The Lord will use those things in thier lives, just as he has used them in your own, but that doesn't make it hurt any less.

I pray that you find the right place and that Will will have a WONDERFUL kindergarten year.

Cowboy Up said...

Thank You for your blog. Give me inspriation daily.
We have 9 boys that we have adopted. They all have own special needs. We have two with limb differences.
Thank you for showing me that anything is possible with faith.
Thank you again for this wonderful blog.

Claire said...

Will will probably be able to use a marshmallow gun like this one,a nd they are cheap too!

http://www.instructables.com/id/Marshmallow-gun/

Another way is to adapt toys with a battery interrupter and a switch. You can make battery interrupters yourself, or buy them.

http://www.instructables.com/id/No-Solder-Battery-Interrupter/

http://enablingdevices.com/catalog/useful-devices/battery_interrupters/battery-interrupters

Love Claire

Kelly said...

Katie- just saying a special prayer for Will's kindergarten teacher next year... that God will send you to just the perfect teacher and school. I know that God has handpicked a great teacher for Will to have and that He will guide you as you make these decisions. I know it has to be really tough, but I am praying for an amazing process of seeing it all unfold.

ywilbur said...

The stares and comments are so hard for me and for Kharan too. All the new instances. We went to Disney in October, and I'm just as bad with printing pictures, but of the 100 some pics of Kharan in 80+ pictures there is at least on child in background point or standing with head cocked staring blatantly at Kharan's left hand. One of the hardest things in Kindergarten this year is the 'helper' kids and the teacher supporting it because it allows the class to be 'faster' and 'the kids are just trying to be friendly' attitude. It takes Kharan longer to do things like fold paper, cut with scissors, snap pants, do puzzles and kids just come up and snatch things off him to do it for him and he responds often with 'a mean and loud NO' which I'm told hurts the other kids feelings so the teacher 'is working on him accepting help with kindness'. And the teacher and principle all seem nice and really do seem like they want to accomodate but at some time I keep getting...'but he needs to learn to accept help' 'our time is limited' 'you must understand the other kids are not being mean they just want to help and their feelings are important too...' And it's true these aren't bullies and I know how mean Kharan can sound (he would make a great actor!) but still it irritates me to no end that every situation he is hounded by others and will be forever.

It really hurts that he is expected to be so nice all the time. Not that I want him to be mean but when he tells people to more or less bugger off, they don't. Kids take that as sign to be meaner to him and adults often then take it as sign that they can express their 'pity' to me: 'oh, I bet he gets so upset by all the questions how are you teaching him to deal'...

I'm a pretty private person and don't like lots of attention and quite honestly I often few anger toward these strangers and I don't want to answer their questions. But I do. Because I HAVE to set an example for Kharan to respond kindly.

ywilbur said...

Another thing that is hard is that I often feel like a hypocrite because since my child has a physical special need he is expected to be not the kid who points to others with differences but sometimes he is the one pointing out to me every person we meet with a limb difference or physical disability. He asks my friends husband every time we see him (5-6 times a year) 'what happened to your arm?' He often points at other kids and I'm sure if met Will he would at some point be asking him. My greatest embarrassment to date was him calling a little boy who was burned in a fire a monster...'look at the monster mommy!' he shouted while pointing right in the kids face! I wouldn't want any child of mine to say that, he'd never even considered the possiblity of what a child with burns would look like but I couldn't believe those words came out of his mouth! Why didn't he know not to say something like that?! After I explained how the fireman had saved him from a fire, privately after uttering a horrified apology and whisking him to bathroom he seemed to understand but since he has physical needs I feel this immense pressure as a parent for him to never be rude to anyone....yet of course being a child he sometimes is.

Katie - a Blessed Mommy! said...

Thanks for the encouragement on schools! I should mention that we are mostly looking for the following year! I think Will will likely do kinder this year at his current preschool & because of his very late bday (1 day before cut off date!) he will do kinder then again at the school we choose for elementary. We are not quick decision makers so we are starting the process now.

Katie - a Blessed Mommy! said...

Christie & Yetta- Thank you for sharing your hearts and struggles with me. You are ahead of me in this journey and I so appreciate your willingness to provide me with insight!
Yetta- I just spoke last week on raising sensitive kids - teaching our kids how to deal with people in public who are different them them (because you are correct, just because we have kids with differences we aren't exempt from them noticing and staring or pointing!) I plan on posting some of my thoughts on this soon - maybe some little ideas you can teach Kharan.
-K

lisa w. said...

Katie, so happy to read your comment that kindergarten will be NEXT year, not this coming school year! I remembered Will's birthday was right by the cut off (Mason is October, so I kept wondering why you were talking about kindergarten so soon!). Going into kindergarten closer to six is great, no matter what your situation.
God has a teacher already picked for you and for Will. What a LUCKY teacher she is going to be with Will in her class!

The Reeves bunch said...

Thank you for your inspiring blog. It also was a reality check for me. I will have to start worrying about all of those things with Eli soon. WOW! Your kiddos will adapt to any situation you put them in. We as parents with children with differences get the responsibility of chosing which situation to put them in. I will be praying for you as you deal with what Kindergaten class to put Will in. You are truly an inspiration to me!

We need to get our kiddos together! I know that they will have a BLAST together. Maybe Eli and Ellie can teach each other different ways to do things.

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