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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Conquering the Rain!

A few weeks ago, I watched one of the most beautiful sights unfold before my eyes.

It was a dark and stormy night.  Well, not really, but it was a rainy afternoon, which in our house can turn into a dark and stormy night pretty quick!  If you are new to my blog, you can catch up on the rain posts here and here.

On this rainy afternoon though, Sketch blew me away… and it wasn’t even windy!  I had to meet him at the bus at the end of our long driveway.  So he had much farther to travel to get into the house, than when I was homeschooling him.  Plus, now I am expecting our fourth child (a surprise treasure from God, for sure!), and I simply am not able to carry him all the way in, as I had before.

So I spent a great deal of time trying to figure out how to make this work.  I decided to walk up to the bus with Sketch’s frog umbrella.  He loves that frog umbrella when it is dry, and he’s inside!  Not once has he used it in the rain. He always rejects it and while terrified of getting wet, he asks, “Carry?”.  So I thought if he saw me use it in the rain, he’d understand that it will keep him dry too.

When he stepped off the bus, he looked at the umbrella with a smile.  I handed it to him but he didn’t reach for it so I took his two hands and had him hold it.  When he seemed steady with it, I slowly released my hands.

Bigger Smile!

And he was soooo proud of himself!  He held it very tightly, and just seemed amazed at how it was keeping him dry.  He didn’t go in the house when we got to our door, he kept walking around in the backyard, cute as can be…soaking up his victory!

From our back window, this is what I saw:

Isn’t it beautiful?  There he is holding that umbrella as if it were the Flag, as if he were marching!  Maybe it was his victory march for conquering his rain fears 🙂  When I saw him walking around like that, tears came to my eyes…and granted, I am pregnant so maybe it was just the horrormones (as my friend, Kay, would call them), but really, what I was thinking about that made this picture so beautiful to me is what has happened to to get him to this place.

After the post Short, Sweet, and Silly was written, I had to take Sketch in the rain to OT.  He surprisingly didn’t object to leaving the house!  He didn’t want to get wet or deal with rain, but he didn’t let his fears stop him! (Lesson #1) and he asked to “Carry?” which I did.  He didn’t just have me simply carry him though.  When I picked him up, he wrapped his little long legs all around my waist and his little long arms all the way around my neck (almost twice!) and he clinged to me so tightly that I didn’t even have to hold him!  If I let go, he was just there, unbudged!  (Lesson #2)

The next time it rained, he did the same thing. Just accepted the rain and clung to me as if his life depended on it.

And the next time, it was a Sunday and we were at church.  Mr. Incredible got to carry him this time and I got to watch Sketch cling to him in the same adorable way.

It’s just intensely beautiful…because this is just what God wants us to do with our fears.  He does not want us to be held back by them, but to cling to Him through them!

Isaiah 41:10 says, “So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.

Joshua 1:9 says, “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”

God must have been holding up Sketch under that umbrella, making the safety of His presence known to him.

And he’ll do it for you too!  Do not be afraid!  And as my favorite potty training card says, “You go girl!”

Merry Christmas everyone!

Sketch’s First Day of School!

Today is the day of Kindergarten for Sketch.

Besides being worried concerned about all the things that could happen on his first day, we are very excited.

I was planning to homeschool him this year.  Sketch had such a hard time leaving home to go to preschool every day, especially when he would see his Princess Buttercup and Dash staying home.  He always loved being at school, but the leaving home part was what was so heart breaking.

With tears streaming down his face while he sobbed, he’d wave his hand at me from the car, “Bye-bye Mommy. I love you Mommy!  See you after school, Mommy!”  (Sniff, sniff!)

Heart wrenching!

He really didn’t “play fair” at all.   As soon as Mr. Incredible would pull out of the driveway, Sketch would perk up and start singing his heart out, happy as can be.

But day after day…it just wore on me!  I started to wonder how much he understood.  Like, did he know that the twins were staying home with me all day for homeschool?  Did he wonder why we sent him away to school?  Does he wonder if we don’t want him home?

Sketch has always liked being home.  He would often need some coercing to get him to go out of the house unless it was a highly motiving place, like the Bounce Zone or Childrens Museum (and now we can add gas stations and drive-thru’s as highly motivating too!)

But, somewhere along the way, his “want to” (as Beth Moore would say) changed.

I think seeing his twins get on and off that big yellow bus had something to do with it.  He just loves busses!

Over the first month of the twins school, Sketch made it clear that his “want to” changed.  He didn’t want to be at home for school.  He didn’t want me to be his “teacher”, but to be his Mommy.

He DID want to go to school. He wanted to ride the bus to school, to participate in circle time and play in the big gym (and probably to show off his spanish vocabulary and accent, and his reading, writing and spelling ability…or, maybe that’s me!)

And, as I’d watch him play at the Bounce Zone, I’d see him watch the other kids, and he’d get so excited to be around them.  A wonderful thing for a parent of kids on the spectrum to see 🙂

However, I am sure that his real “want to” is to sit on my lap on the bus ride to school and to sit on my lap in those tiny kindergarten-sized chairs all day at school!

There may be some surprises this first day!

However, we are so proud of him for being able to express to me and Mr. Incredible, his desire for school.  We were so proud that we didn’t even really take it as a blow to our home-schooling abilities! How awesome for God to change his ‘want to’ from being just home with Mommy, to wanting to socialize with others!  Especially considering that not being “social” is one of the core deficits of autism!

Sometimes we need to re-evaluate our want to’s as well.  Sometimes we don’t want to change something that we know we should.  But God can change our want-to, just like he changed Sketches.

Psalms 40:8: I desire to do your will, my God;  your law is within my heart.”

Psalm 119: 1-5

1 Blessed are those whose ways are blameless,
who walk according to the law of the LORD.
2 Blessed are those who keep his statutes
and seek him with all their heart—
3 they do no wrong
but follow his ways.
4 You have laid down precepts
that are to be fully obeyed.
5 Oh, that my ways were steadfast
in obeying your decrees!

So if there is any hesitancy to in seeking God with all our hearts, in jumping over to solely following and obeying God as the Psalmist did…if there is any hesitancy to delight in His ways…if His laws are not engraved in our hearts… then maybe we should ask God to change our “want to” too?

John 14:14  “You may ask me for anything in my name, and I will do it.”

Now that is an awesome promise!

And When There Is Not…

A Time For Everything

There is a time for everything, and when there is not , something must change. This is the season we are in. Interesting things happen when Newtons Law of Motion (Every action has an equal and opposite reaction) crashes into Ecclesiastes chapter 3!

Ecclesiastes 3:1-8

A Time for Everything

1 There is a time for everything,
and a season for every activity under heaven:

2 a time to be born and a time to die,
a time to plant and a time to uproot,

3 a time to kill and a time to heal,
a time to tear down and a time to build,

4 a time to weep and a time to laugh,
a time to mourn and a time to dance,

5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,

6 a time to search and a time to give up,
a time to keep and a time to throw away,

7 a time to tear and a time to mend,
a time to be silent and a time to speak,

8 a time to love and a time to hate,
a time for war and a time for peace.

I have been in a season of “and when there’s not” a time for everything.  I have been home-schooling my 7 year old twins (Dash-with autism/ADHD, and Princess Buttercup-typically developing) for the past 2 years, due to issues with our local schools.  Now, we are entering into the time of my  youngest, Sketch(5), who also has autism, graduates from preschool (only 9 days left!)  and also will be entering into homeschooling.

There is just not enough time in a day to homeschool all three children, and get to therapies, etc.  The equal and opposite reaction to “doing to much” has resulted in many things, but especially an unmanaged house which is a constant frustration (by the way, by “unmanaged”, I don’t mean just unorganized or not picked up, but more like a tornado has hit!!!)  As positive as homeschooling my kids has been, the negative force of the pendulum has been becoming just as strong.

And so a change is required, it is time for a new season.  As this has become clear, I have been thinking about Ecclesiastes 3.

There is a time for protecting, and a time for letting go

A time to learn, and a time to act

A time to fight, and a time to accept

A time to pour in, and a time to fill up

A time for pressing in to do more, and a time to ask for help

A time to hold on tight, and a time to let go

A time for work, and a time to rest

A time to allow a mess, and a time to clean up

A time to learn at home, and a time to go to school

A time of certainty, and a time of unknowns

I am not sure what will happen in the next season.  I only know what is coming to an end.  The next few weeks will be filled with meetings with the schools to determine what the possibilities are.  In the meantime, it is a a time of faith.  Proverbs 3:5-6 says, “Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.”

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