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Wednesday, February 19, 2014

Journey with Josiah {8} and My Letter to Parents Like Me

Josiah had another evaluation today.  Our insurance requires that an evaluation be performed by the place in which he is to receive therapy even though he has already been evaluated for autism twice.  So what do you do? You just keep jumping through those hoops until you arrive.  So after a third diagnosis of high functioning autism, we are finally arriving.  Once our insurance receives his diagnosis, approves it and gets all the paperwork finished, we can finally start therapy.  We were told it would probably take about six weeks. I'm not complaining. Six weeks isn't very long in comparison to how long we've been waiting.  I guess I don't really mind all the evaluations either.  After three of them by three different institutions, at least we know for sure that it is autism!

But my main reason for writing this blog today is not about the actual evaluation. I would like to share with you what happened in the waiting room.  But first, in case you aren't very familiar with autism, you should know that the autism spectrum is vast.  No two cases are alike.  I've met many children with autism, and they've all had different issues.   But today Jordan and I witnessed Josiah's "autistic twin" for the first time. 

We were already in the waiting room when this little boy (maybe 3 years older than Josiah) came barreling into the room.   He paid no attention to anyone in the room but pretty much dove into the toys. He then proceeded to make these loud "squawking"  noises just like Josiah makes, only louder.  And then he started circling around the room while making these noises.  And then when his mom tried to explain to him that he couldn't be so loud, he slapped her in the heart broke for her.    I knew exactly how she felt.  Josiah has done the same to me and to Jordan when he has been frustrated and over-stimulated.  

I didn't get a chance to speak to this woman, because I had a booklet that I had to fill out.  But if I see her again in that office, there are a few things that I would like to say to her.  In fact, I would like to just address all parents of children who are "different". So.....

Dear parent of a child who is different,

I may not know you, but I KNOW you.   You love your child.  You love your child so much that you will do whatever you have to do to help him/her.  

You probably have the telephone numbers to five different doctors/therapists memorized.  You may even know each receptionists' name by heart.   But you're not the only one memorizing names and numbers. Your insurance provider recognizes your number on their caller i.d.,which is probably why they don't ever answer when you call.  

And with each different doctor, therapist, referral, evaluation, etc., you have filled out enough paperwork to fill a very large book.  In fact, you should go ahead and get that biography of your child published.  But wait.  It would only make for about 10 pages because all 500 pages of paperwork that you filled out was just writing the same thing over and over again.  Yeah, scratch that idea.    

Yes, I know you.  You're tired.  Mentally and physically.  This is a kind of tired that reaches to your bones and seeps into your that leaves you begging God for just an ounce of strength. 

And when you do get that rare chance to catch up on sleep, you probably don't take it.  You use that time without interruptions to do even more research on your child's condition.  Because maybe the next supplement, diet, detox, oil or therapy will help.  If even just a little, it's worth it to you.  

Maybe your child's "disability" is hidden from the naked eye.  He looks perfectly normal to the stranger in the grocery store. You bite your tongue when that stranger whispers loudly to their spouse that you need to control your child. Sticks and stones, huh? Who ever said that? We all know that words sometimes hurt worse than the physical assaults.   It has even crossed your mind to make your child wear a shirt that says, "I'm autistic" just so people will understand.  But some still won't. And then you really would be "labeling" your child.

 Or perhaps your child's "disability" is very obvious.  You have to bite your tongue when people stare at your child like he's a freak. It's hard enough that he is "different" but people are so cruel to point it out as if he didn't know.  Those tears in your child's eye break your heart.  Over and over again.

But you try to smile when everything in you wants to break down and cry.  You are your child's cheerleader. He needs you to be strong.  So you pick him back up again.  You tell him that this world is cruel and dark and he's just too bright for it.  People have a hard time accepting what they can't understand.  You tell him to keep shining anyway.  Because Jesus understands. Jesus accepts him.

Yes, I know you.

You're juggling a million things at once.  Maybe you have other children.  Maybe your married.  Maybe your single.  Maybe you have a job.  Maybe you are a stay at home mom. Maybe you homeschool.  Whatever the case, you have other responsibilities.  Other people depend you on.  So you stretch yourself a little bit more and a little bit more.

Sometimes you feel like you have lost your own identity.  You don't recognize that carefree young-thing in photographs anymore.  But you don't recognize that person in the mirror either.  Have you really aged that much in just five years?

You dream of laying on the beach somewhere with zero responsibilities.  But then you start feeling guilty.

Yes, I know you.

You sometimes even fault yourself.  You ask yourself what you did wrong during the pregnancy.  What did you eat? What did you drink? Was it the vaccines? Etc., Etc., Etc.

You're hard on yourself.

Sometimes you feel like no one understands. But I do.

You're fighting for your child in every way you can.  You're fighting for his well being and for his future. You love him to pieces.  You're thankful for him.  Even if his condition never improves, you will still be thankful for him.

You're doing a great job! Press on! Celebrate the small victories.  They are huge to your child.  And most importantly, enjoy him! God made you his parent for a reason.  Don't let Satan steal that joy from you!


Mom of an autistic child

Saturday, February 15, 2014

Valentine's Day {2014}

One thing I have realized over the years is that life really is short.  There's something about becoming a parent that has made  that statement a reality for me.  Maybe it's how fast those little feet grow from one shoe size to the next...Maybe it's how I've had to do everything for them including dress them and the very next day they are pulling long sleeve shirts from their closet and shorts from their dresser to dress themselves...Maybe it's how he says, "Mommy, I do it.  I cook." Whatever it is, there's no denying it.  They are growing up so fast.  A cliche it may be, but it's true.

So what's a parent to do when she realizes that time stops for no one? She celebrates.  She captures those moments....those smiles....the laughter.  All of it.  Even the messy. Even the things that make her want to pull her hair out in the moment.

And that's why I'm not a Valentine's Day "hater".  I kinda use to be....I once had this mentality: "I don't need the world to tell me when or how to show love." But I've had a change of heart.  Now I just see it as another opportunity to show my loved ones love....because this life is short.  We need to take advantage of all the opportunities. And not just on Valentine's Day...because then you DO  fall into most of the world's way of thinking.  No, commit to show it everyday. The love of the Father.  Love the way He loves.  Sacrificially.  Even on the other 364 days that aren't Valentine's Day.  Even when it's hard.  

phone pics: