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,




School, School, School…

waiting for the bus

Sketch started the Second grade today.

First grade did not end well. We got an IEP progress report in Sketch's book-bag, on the very last day of school that mentioned several things the teacher should have made us aware of ahead of time. We had a lot of questions that we could not ask because the school year was over.

Questions like: How many time-outs was he having, and why? If he was spending 70% of his day scripting and fidgeting, then when exactly was he doing school work? Why does the report say he is not able to do what he could do when he went into Kindergarten?  Why does he say, "Stop, Sketch! That's weird. Go to time out!" all the time?

It took a few weeks to calm down enough to organize my thoughts and actually write a letter to the Special Ed director, but I did it. I sent it off in the mail the Friday before Independence Day.

At the end of July, we went to the Autism Society of Maine's Family Retreat. One of the speakers there was from the Disability Rights Council, and she spoke on, of all things: Time-Outs, Seclusion and Restraints!

It turns out that in the beginning of June a new law was passed. A law that requires that restraint and seclusion be used only when the "student presents imminent risk of injury or harm to the student or others and where less intensive interventions have been unsuccessful." (May 2012 issue of DRC News)

A windy morning!

It also requires that parents be notified when there is seclusion, and that if there are 3 seclusion events in the same calendar year, an IEP meeting must be held. (If you are interested, you can download and read the law here.)  This new law is very exciting because for the first time, Maine schools will be held accountable for the who, what, when, where, how, and why of restraining students and putting them in seclusion. For the first time, there will be data on how often this is happening.  My bet is, the number will be much lower now that there are consequences to using it.

However, there is a problem. Sketch likes time-outs. It's his escape. He is very gifted in finding ways of getting one too. He will request one and if it isn't given, he will act out so that he does get it. Time-outs on request of the student don't count as seclusion under the law. That is, unless the teacher or other adult restricts him for exiting the time out, in which case, it does count as seclusion and the law applies.

So, we have a battle to fight, and an initial IEP meeting to be held and to have specifically written in it that we will be notified of all time-outs as well as seclusions. There are many other issues as well. His academics are well above his ability to cope in a typical classroom, so they have placed him in the "life skills" class for most of his day.  Here, my 7 year old Second Grader can play with preschool toys and watch Thomas the Train or Elmo's World, and do the same. thing. year. after. year. after year.  And, he doesn't bother anyone in a typical classroom. He doesn't have to learn how to handle himself in a classroom. He doesn't have to learn from his peers.  He can "stim" all day, and script all day, and be in his own little world all day long, and not learn a single useful thing.  The life skills class is the class where they place the students who they don't expect to ever learn. So why try?

Needless to say, not much learning happened last year. As a matter of fact, his current progress report noted he was behind the first grade level in reading and math, but his IEP going in to Kindergarten noted he was at the second grade level at the time of entrance! The good thing about this is that we can document regression, and that should get some attention.

He really needs to be in a much smaller regular ed classroom, but our school does not have any classes like that, and it would cost a lot of money to create one.

It seems as if, in order to get anywhere with the school, we will have to hire a lawyer or we'll have to give up on them again (we pulled the twins out for Kindergarten and first grade due to problems with the school), and homeschool him.  I would love to be able to homeschool him but I don't see how that is a viable option at the moment.

So excited and chilly!

The whole mess reminds me of when Sketch's big brother Dash was first diagnosed with autism, and we had to go through such a horrible fight with the State to get him any services at all.    We had been counting the days until CDS (Child Development Services, the early intervention branch of the Department of Education) would be out of our hair, so when Sketch showed signs of autism too, we didn't want to have him diagnosed because it meant dealing with THEM again.

While in the midst of all the "fighting" for services that we went through for Dash, we spent a lot of time wondering: who is at the top of CDS, who is really in charge, who can make changes, who will listen to us, etc.  At the time, I was reading Esther:  A woman of strength and dignity, by Chuck Swindoll.  He was talking about a verse and applying it to King Xerxes but when I read it, I related it to the king of CDS and hit me between the eyes and held me through that time.

"In the Lord’s hand the king’s heart is a stream of water that he channels toward all who please him." Proverbs 21:1

And I remembered: the king only has authority because God gave it to him (or her).  They may think they are in control, but ultimately it is God, and he is who guides the heart, no matter how stone-like it may be.

And then one day, it happened. The Director of CDS called and told us they would give Dash 30 hours a week of preschool (he had been approved for only 15 hours a week). This meant his preschool also had been approved to offer full days to other children who needed it.

It was such wonderful news. The preschool we chose (and love dearly, to this day) was not the favored ABA type preschool but was one that took a developmental approach and relied a lot on DIR/Floortime. The director of CDS had a heavy bias against this preschool, but because of how well Dash (and other children there at the time) responded to it, they approved the school to offer full time programming.

And I knew that I knew, that I knew the God who was really the one at the top. He was the one I needed to talk to; He was the one who could make changes. He was the one who could soften a rock-hard heart. No matter how much they (or us, for that matter) think they are in control, the truth is that only One is in control. And He has a soft spot in his heart for the disabled, for the children, for those who can't speak for themselves.

So again, I am reminded that ultimately, God has this all under control and is able to move in the hearts and minds of everyone involved to care for his child.  He's done it before and he can do it again.  And He is; He is changing laws that will protect him, as I sit here trying to figure out what I need to do to help him.  He is already on the move.

Luke 14: 12-14 "Then Jesus said to his host, “When you give a luncheon or dinner, do not invite your friends, your brothers or sisters, your relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.”