Tuesday, June 18, 2013

Picking My Battles...

Raising children with special needs is different than raising typical kids.  That seems like a given.  I knew that at the start of the journey. But I have found myself surprised at the kinds of things that are no longer important to me as a parent.  

Like what, you ask? Let’s see…I let AJ eat every meal in the living room.  Yep, that’s right, in front of the TV.  I never dreamed I would be THAT parent!  However, it’s the only way she sits still long enough to eat a whole meal!   Another ridiculous thing I let AJ do is eat off the floor.  Yes, you heard that correct…the floor.  Now before you call CPS, let’s be clear I do not put food on the floor and ask her to eat it.  She is incredibly clumsy and drops everything.  When she drops food, she has a traumatic response.  She MUST pick it up and eat it.  When I try to intervene, it becomes a fight-or-flight battle over food.  That snowballs into more trauma response issues and well, you see, it’s just not emotionally healthy for her if I push the issue.  I DO, however, calmly talk her through what’s safe at the time.  I TRY to have her look at the food item and attempt to talk her through making a good choice.  If it has cat hair or other visible dirt, let’s put it in the trash and get a new one or at least wash it off.  She has been able to make the right choice about 40% of the time as long as I do not try to physically intervene.  On a related note, she does have a great immune system!  

Does your family do things that a ‘typical’ family may not?  I really enjoy our special needs family think-outside-of-the-box differences! I think maybe that our adaptation skills just might make us more ‘evolved’ than typical families!  Hee Hee! 

Monday, June 17, 2013

Tuesday, June 11, 2013

I never thought I would….

This post is in response to a writing prompt from my new friend, Ellen Stumbo.  (You can read her response here.) Thanks, Ellen, for prompting me to think on these things!

I have been thinking about this for a while and I cannot choose just ONE thing that I never thought I’d do.  My life is FULL of things I never thought I’d do.  Thankfully so, as the life I had envisioned would have been quite boring, dull, and far too normal.  

Also, I never thought of wearing THIS to the chiropractor! 
The biggest thing I never thought I would do was to choose to become a single parent.  It’s certainly not what I grew up dreaming about!  Does anyone?  I had to be completely coerced by God Himself that I was to take this path.  I still struggle with being enough for my girls.  I struggle with feeling like they are missing out.  The truth is God is enough for them and for me, too!  

After becoming a single parent of a special needs child, I never thought I would become so isolated.  I am an introvert at heart and it was such an easy transition at first.   And then it just got lonely.  As KC’s behaviors have gotten worse over the years, so has the isolation.  For the last 8 months she was at home, we never left.  We weren’t able to go anywhere or do anything.  I was unable to go to work; AJ was unable to participate in any social activities.  We couldn’t even go to church.  It was during that time I began to learn more about myself and what I need to function properly.  I was shocked to discover that I do really require social interaction.  (I also discovered that many people couldn’t or wouldn’t join me in that valley, but that is another post.)

The most painful response to this writing prompt is still so raw.  It’s still ‘being treated’.  I never ever, ever thought that I would have to choose between my children.  Now, before anyone jumps on that, I fully know that the choice I made was THE best for everyone, including both of my girls and that I didn’t actually choose one over the other.  But in my heart, it feels that way….and it feels so very wrong.  To willingly have my child removed from my home was, um, well, there just aren’t any words big enough, or strong enough to express what happened both physically and emotionally to our family.  It is something that has scarred each of us for life.  I look forward to the time that we can look back and see how God used those scars and made them beautiful.  Until then, we seek His healing balm.  

So what have you never thought you would do or be?  What has surprised you in this grown-up world? 

Sunday, June 9, 2013

Let's Get Real...


 It has been far too long since I’ve taken time to write what about what’s on my heart.  Partly because it’s just so much; and partly because writing it makes it real.  So, if you’re ready, let’s get real.  

PAIN is a part of life; a necessary, mandatory part of life. As a family we’ve been experiencing all sorts of growing and stretching pains.  And as a family we TRUST that God is working all these things together for good because we love Him.  But the hurt is so very real.  I find it too easy to stop there; to stay focused on the suffering and forget the bigger picture developing around us.  So while I know the hurt is real, I need to remember that the TRUTH is real, too.  
AJ and KC

As a family, we each are struggling with our own little issues and also with the big issues that are consuming our whole family.  In April, KC moved to a bigger facility that is better equipped to handle her needs.  She is doing very well there and truly is enjoying the newness and all of the attention.  She is blooming with the strict structure and routine of it all, of course.  That’s Autism, for you!  Unfortunately, that comes at a cost; a cost to each and every one of us.  KC is excelling with her Autism traits, but at the cost of further damage to her attachment ability.  AJ is severely anxious about every little thing and is not functioning well day to day because she is always concerned about when she will have to leave.  (She cannot comprehend that she is not going anywhere.)  Me?  Well, my daughter is now 60 miles away in a large facility and being parented by strangers that I have no control over.  Yeah.  It stinks.  

Visiting KC
I have, however, come to the conclusion that it’s ok for me to not like her being there.  I struggled for the first month or so with it…questioning whether it was the right move or not.  It was the best move at the time.  It is the best place for her to be right now.  But I don’t have to like it.  It’s probably even a good sign that I don’t.  Every move we make, every choice we make is going to cause further trauma for each one of us.  This makes it so difficult for me to make even day to day decisions.  Again, I get so caught up in the struggle and the hurt that I can’t see the bigger picture.  

What else has been happening, you ask?  Well, AJ and I have been attending a different church the last few months.  I absolutely love it.  One of their biggest missions is to not only serve those with disabilities, but also to teach them to serve God.  There are lots of other special needs parents at this new church.  I cannot explain how huge that is for me.  There is an instant connection, or understanding that parents of typical children simply cannot comprehend.  This church is a beautiful picture of the family of God.  I am so thankful that He led me there. 

In other news, I continue to make progress since my gastric bypass surgery in January.  I am able to eat pretty much anything without complications.  The key is just to eat teeny, tiny amounts and chew everything very well.  I have lost 51 pounds since surgery making it 95 pounds lost since starting this journey a little over a year ago.  Surely, I have a long way to go, but I am making good consistent progress.  This journey is about so much more than what to eat and what exercises to do, most all of the ‘work’ is mental.  I’ve had to change the way I think and react and feel and cope.  (No wonder I’m so tired!)  It should only take another 37 or so years to get the hang of it all.  

I want to thank you for standing with us as we travel through life.  I cannot say thank you enough.  Your prayers and phone calls and time spent debriefing with us is truly helping.  I promise.  We’d be even crazier if it wasn’t for YOU!  For those that desire to pray with us, I am specifically seeking God and His answers for the following:  AJ’s anxiety and whether to seek medical intervention for it, ways to stay connected to KC, and for the financial needs at this time.  Thanks so much for being…yeah just being is ever so important.  And if you see me around, feel free to remind me of the bigger picture and His truth!