Monday, August 4, 2014

Being the Advocate

I thought I understood the word "advocate" pretty well until I became one. 

I have been learning that when you're the advocate for your child, you are their voice when they have none.

You speak up for them when someone who should prioritize them doesn't.

You cheer for them and notice their accomplishments when others don't see it.

The Momma Bear or Papa Bear comes out at times you don't expect, but you're ready.

Always ready.

Internally you struggle to accept the fight you're fighting even though you thought you already accepted it.



And sometimes when you're the advocate for your child you go to an audiologist & balance center to get a hearing test.  You do it because the pediatrician sent you, and you feel like you're doing the right thing and that you'll get answers.  But then you realize you got an audiologist that doesn't really care to go the extra mile.  "Maybe we should send him away with a sticker so that he's not scared; we want him to be happy when he comes back the next time."

I thought in shock.

Excuse me? 

Why don't you finish the tests we came here to do?  We don't show up to places like this just for fun.

We don't enjoy throwing away $100 to do an easy test with an inconclusive diagnosis and have you tell me all the things I could have told you myself - such as "he can hear well in at least one of his ears." 

Not trying to be rude, but we already knew that.  And what kind of advice is "practice sticking things in his ears?" 

Also from a bargain perspective, I can buy 1,000+ stickers for $7 at Staples...I don't want ONE sticker for $100.

When I was finished being dumbfounded, I found my voice & spoke up in Miles' behalf.  I convinced her to at least try the other tests.  One of them was helpful & unfortunately the one that would have provided the REAL information we were looking for needs to be done again in 6 months...*sigh* But at least we gave it a real try.

Sometimes I still wonder if he has some sort of minor hearing distortion or slight hearing loss that affects the way he hears sounds and forms them back - but maybe not - we won't really know until he can sit quietly & still for 45 seconds with a monitor watching the waves on his ear drum.  In the mean time we just have to go forward as if there is no hearing problem at all, because that's the only choice we were given.

I felt only half successful as his advocate that day.


Sometimes when you're the advocate, you meet with Early Intervention.  Again.  And again.

You think it'll actually help this time.

It doesn't.

They wait until the last possible second to test your child. 

You only go there because you don't know where else to go.

Truthfully, the evaluation WAS helpful because they were a second source to confirm that yes he does have a speech delay, but since they tested him at the very end of the window, he had developed a new skill or two in the days leading up to the evaluation that bumped his scores up to just barely scrape the range of not qualifying for services....they also counted his communication with sign language to boost his scores...that hadn't been counted before...but now that it was counted, they felt they didn't need to help him.  My mom summed up what they told me pretty well - "You're working your buns off; keep it up."  I understand that my child doesn't need multiple therapies - he is not severely handicapped, he's not autistic, he doesn't have major physically or mental delays and I'm sure that what he struggles with in comparison to other kids that they do qualify for services is probably a dramatic difference, and I believe that the kids with more severe delays should qualify for services. 

However, I'm also telling you that where my son's speech delay falls is STILL a dramatic difference compared to even the middle or average of the range he should be in, and we're only where we're at because we've been working harder than we've ever worked, and all of it was just to have them to congratulate me that he barely didn't qualify.  I should be happy I guess, but I'm too exhausted to keep this pattern & schedule up and to just scrape by. 

They left me so frustrated & without hope. At the end of the 2nd evaluation, I just cried. Now that I look back, I believe it's good that they made me feel that way, because I needed to realize that's how I've felt after ALL of my experiences with them.  They are NOT the right avenue for me and my child.  Early Intervention touts a worthy mission & cause, but they don't live up to it in the way I thought they could.  I realized that I need an avenue that gives me hope - one that puts my son as a priority - one that is more about getting results than doing paperwork. 

Believe it or not, I have a friend whose son has down syndrome.  She told me she wished she didn't have to rely on Early Intervention at all & that she could do ALL of her son's therapies in the private sector.  I was shocked at what she said.  I thought that surely having greater needs than my child, that HE would get the kind of services he needed - but as she fights his cause & helps be an advocate for him, she feels that even having special needs, he isn't getting what he needs even though he "qualifies".   SHE is the one who opened my mind to realize that there are OTHER places to go!  Of course there are!  I should have known that!  This is America!!!  America is built upon capitalism - and we all know that the private sector is better - I wish I would have realized sooner that Early Intervention was NOT the only place there ever was to go.  But this was my first time in the trenches with anything of this sort, so I have been on a learning curve. 

We have already found a speech therapist that we LOVE, & I'll talk more about that in another post.  Essentially, in less time than I spent waiting to get approval from Early Intervention, we have already seen some encouraging results, because it's a more effective avenue!  If there ever is a next time, if I can, I'm going to skip learning the hard way.



What I've really learned from being someone's advocate is that WE ALL have an advocate.

His name is Jesus Christ.

He is our advocate with the Father.

He is full of perfect justice, and He is equally merciful.

He pleads our case.

He looks at our situation from ALL the angles.

He knows the ins and outs of our story.

When no one else puts us as a priority, we can pray, and He is there immediately.

He knows what we need BEFORE we even think to ask Him in prayer for it.

He is ALWAYS there with open arms waiting for us to Come Unto Him, because WE ARE ALWAYS HIS PRIORITY - WE ARE HIS WORK & HIS GLORY.

He sees our imperfections - He knows what we need to work on - He forgives us of our weaknesses, and when we let Him, HE MAKES OUR WEAKNESSES STRONG. 

HE LOVES US.  HE GAVE EVERYTHING FOR US.  When we can't see anything good inside of ourselves, HE finds it & whispers encouragement through the Spirit. 

When we struggle to learn, He teaches us.  Patiently.  He teaches the same principle as many times as we need to "get it".  When we "get it", He shows us the next thing we need to learn or work on.

When we can't find our way, He shows it to us.

I love Him so much - when I fight for my son as his advocate, I think about how the Savior's grace and mercy heals me - it reaches out and scoops me up.   I want to give that same kind of love to my kids, and I know that is what I need to do for Miles...and for Emmett....and for all of their respective fights...whatever it is that they might face, I need to follow the example of my Savior, and be there for my kids just as He is always there for me: fiercely, passionately, kindly, patiently, humbly, and happily.


That word means so much more than I ever thought it could mean.