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

 

 

Letter #6 Permission To Have Fun, Granted!

Letter 6

Dear New Autism Mom, 

If you were here at Joe Muggs, drinking coffee with me right now, I would tell you something that seems a bit silly and sometimes frivolous, but it is profoundly true: it's ok to have fun. 

It's not only ok, but it's required. Non-negotiable.  

Many parents grieve when they first find out about the diagnosis, and that is very much needed. Your parenting paradigm just had a major shift.

But at the same time, you can still have fun. You can enjoy your childs quirks.

When I first learned about my son's autism, I grieved intensely. I couldn't even look at him without bursting into tears.  I was afraid of the future; terrified that the child I had would not be able to hold the life I had dreamed of for him. 

I am guessing you can relate to this, too?

Another thing that I was grieving, was that I really did like my son's quirks. I loved the unusual expressions, the unprovoked laughter, the stims--they made me giggle and piqued my curiosity.  I marveled at the raw display of emotions that reached level I rarely felt.

And you know, I learned I didn't need to grieve that part --or most of the other parts, either.

I could embrace it. I could enjoy him. I could engage in the different with him.

But many books and voices out there, will tell you that you need to "stomp out the autism", or that you must teach them how to behave so they look "normal".  And you know what I have learned?

They already are normal. They are perfect just as they are. God made them the way they are, intentionally, and so I embrace that. I choose to see God's image in them.

And I choose to have fun with them.

I also choose to have fun without them.

It is hard work to be a special needs parent, especially when you have more than one special needs child. And although the cultural drive is to cure them: to never let them stim, to keep them engaged as often as possible, the truth is that God is the only one who can heal

And sometimes, the person needing the healing is you and me, not them.

We can't do our part in helping our child if we don't do our part in helping ourselves.

It really isn't optional.

We often feel guilty when we have fun for ourselves, but we shouldn't. We need it. We need it for us, and we need it for our families.

So think back to the things you always wanted to try, or the things you used to love to do, and do that.

Schedule time and put it on the calendar--in ink. Make it a priority.

Make a mandatory appointment with yourself, and get out of the house, alone.

Do something YOU want to do, and then encourage your significant others to do the same. Make it a rhythm in your house. 

Then you will be able to relax, to breathe again. You will be refreshed and you will find renewed joy in the hard work that awaits you when you return home.

And in case something a little more official is required to give yourself permission for fun, here is a prescription, just for you.  Print as often as needed!

 Prescription for Fun 3