Letter #7: Entering The Early Intervention System

Letter 7

Dear New Autism Mom,

I have returned to the coffee shop tonight, and find myself thinking of you and offering prayers on your behalf. How are you doing?

We've been super busy since the school year started.  It always amazes me how many meetings are required in order to start another year!

As I sat in a meeting this morning, I wondered if you've been connected to your early intervention team yet.  I remember the first time we met with ours, it was horrible. I had been in similar meetings years ago, but as a service provider. Now as a parent advocating for her own child, it's a whole different story. Especially since I avoid conflict at almost all cost.  But for my child? The price was too high and Momma Bear emerged from deep places within. Prior to this, I didn't know the heart has such depths! 

Getting services in place was an intense time of my life. I had not fully grasped what it meant to raise a child with autism (but, do we ever?), and I had not come to the point of embracing autism whole heartedly, either.  The multitude of messages out there about the best treatment, the best services, how many hours, and all I was learning along with the emotional toll, was completely overwhelming.

Having to fight for the services that we needed was a whole other stress that I did not anticipate or want to deal with. But, with budget cuts and dropped services it is more important than ever to learn how to fight for our children and make sure he or she receives the therapies they need.

One of the important things I learned during this time, is that no matter what "they" say, no matter what the "gold standard" is or what therapy is deemed to have the most scientific evidence backing it up,  the truth is you know your child best. There is no one just like him. There may be thousands of studies saying a certain method is the best choice, but it may not be the right one for your child. Then again, maybe it is. Only you are perfectly skilled in dealing with your child. You know what works, what he may gravitate toward or intensely dislike. You know how much is too much, and how far you can push to reap a reward. You are the specialist for your child.

I know you probably don't feel that way right now, especially if you are still in the midst of learning everything you can about autism.  But it is true. God intentionally gave you your child. He saw you and declared you the perfect mom for him. You have the skills and love your child needs,  you have the background that will lean you one way or the other as you make decisions.

That being said, God also put people in our lives to help us. And some of those people are therapists and teachers. Where would we be without them?  They have taught me many volumes worth of material. Some of what they taught me was about fighting for the services that are best for my child even when it goes against the current gold standard treatment. They gave me the support I needed to fight for the needs of my children.

Many times, we had to really fight hard. The state didn't want to put money into a type of therapy they didn't consider as good as another. So I had to learn how to fight. How to advocate for my children and I've learned the very best way to do it.  And that, my dear friend, is what I have wanted to write to you about. Because the system can seem so big and in-penatratable, and, well it's plain intimidating!

When I was going head to head, advocating with the director of early intervention, I was reading the book of Esther. In the story, Esther had to change the King's mind or their whole race would be eliminated. Talk about pressure! But she knew that the battle was ultimately not hers, but Gods.

There is a verse in Proverbs that says, "In the LORDS's hand, the king's heart is a stream of water that He channels toward all who please him."

This is the verse I cling to whenever big problems arise.

When the "king" of early intervention refused to give my son enough hours of preschool to be effective, I prayed that God would change her heart. That He would channel it in our favor. And do you know what happened? She called me personally, and granted the entire preschool an increase in therapeutic hours! It had been a 15 hour a week school, instead of 30 hours a week like many others because it was not their preferred therapy style.

When my other son started Kindergarten he needed an aid on the bus. The school refused to grant it because of money and a lack of qualified personnel.  After a long frustrating fight, I remembered that verse and prayed again that the kings heart would be changed to favor us. And that very weekend--a holiday weekend, even-- the Special Education Director called to tell us she would grant our request!

I could advocate long and hard with all my reasons why we needed the services, but not make even a dent in the heart of the system. But when I pray for God to soften the hearts of the powers that be, and to channel it toward us, He does! And it's as easy for Him to do it as it is to dip His finger in water and change it's course.

The battle is not ours, it is in the hands of someone much bigger. Someone who loves us tremendously. Someone who loves our children even more than we do.

Until next time,

Merri

 

 

Thriving!

(For those new to this blog, let me do a quick introduction of the family: Sage and Hope are 10 year old twins (Sage has autism and ADHD, Hope is NT), Stevie is my 7 year old (autism, ADHD, food allergies, asthma) and Joy is our 19 month old baby girl, who is NT as far as we can tell.)
Rose Colored Glasses-sm

Did you know that pure joy pumps you up into a wild explosion of squirting mess, kinda like a water balloon being filled until it bursts?

I hope I don't get any of you wet.

Today is a snow day, but even better, yesterday was report card day!

Now, I do realize that most of you don't like either, but maybe I can at least change your mind on the report card part!  I have seen too many facebook posts this morning about strangling a certain groundhog to even go there today.

Yesterday the kids brought home their report cards. Hope got a great report, as she always does.  She constantly amazes us; we are so proud of her!

Sage however, doesn't test well. He is so very bright, but it is never reflected on his report cards or tests, which is a constant source of frustration for me.  I keep thinking that one day, he'll show them all what he's made of and they will be shocked into the reality that the parents were right all along (snicker).

So, when I got his envelope with the report in it, I braced myself. I told myself that the report card will be low because he doesn't test well, and I wondered when the reports would start to reflect his abilities.  

When I opened it, to my surprise he got all great marks!  With only below average for the working well in groups--no surprise there!

I know that he exceeds the expectation for math, geography, technology, and science, but to get average marks on anything is great improvement!

I am so very proud of him!

Then, I looked in Stevie's book bag to find his reports.  We had already had his IEP last week, where they said in all areas he is THRIVING!  He is doing great in the regular-ed class, he is working independently in the self-contained class and he is a very hard worker. They commented on how bright he is, and how he remembers what he learns and never forgets.  

I was positively beaming :)  

IEP's have been a source of stress and dread--especially for him as we have had to fight and fight to have his needs met.

This year has been a complete turn around from the past.

The teachers and therapists all agree with his remarkable improvement, progress and potential.

So knowing that, as I read the daily report yesterday, I just could no longer contain myself!

It said that Stevie is "a model student for friends during group activities!" 

My boy!

The one that had such a hard time the last couple of years, is a role model!

I just want to soak it all in--all the raving about my special children--each in their own way.

God has done miracles and given us a time of rest, and dare I say "favor" with the school this year.  

This is definitely well beyond my wildest imagination!

"God can do anything, you know--far more than you could ever imagine or guess or request in your wildest dreams!" Eps 3:20 (MSG)