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.”

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2 Comments

  1. WonderfullyFi said,

    September 13, 2012 at 8:35 AM

    Merri – you guys surely have been through some really rough territory lately but I need to tell you that your ability to see God in everything and to rejoice even though you’re basically treading water at times is such a blessing to me.
    God is SO proud of you my friend xxx

    • Merri Lewis said,

      September 13, 2012 at 9:39 AM

      Fi, I have been working on that! Thank you for letting me know it is getting through in my writing. You are such a wonderful encouraging friend! Thank you!


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