Happy Valentines Day

Follow the link to my latest post: A Valentine: Lessons From Sweet Pea Beauty, Part 2 http://wp.me/p2KqMj-xJ I hope to see you over there!

Advertisements

I Want To Be Like Her: Lessons From Sweet Pea Beauty Part 1

Click the link to join me over at my website and read the latest post!
http://treasuresinthedust.com/autism/i-want-to-be-like-her-lessons-from-sweet-pea-beauty-part-1/

A Bad Rap

Jump over to http://treasuresinthedust.com/autism/a-bad-rap/ to view my latest post on being slow to anger. Remember to subscribe while you are there (on the right side of the page) so you will be sure to get notified of new posts!

I Found Myself Embracing Autism (Part 3)

His beautiful face

I listen to her speak.

I listen to God speak.

Mighty To Save pours lyrics through my head, the music calms. Thoughts are shooting through my confused mind, the song organizes them.

Everyone needs compassion
A love that’s never failing
Let mercy fall on me

Everyone needs forgiveness
The kindness of a Savior
The hope of nations

I need compassion,  unfailing love, mercy and forgiveness. I need kindness, and saving.  But as much as I am so deeply aware of this need right now, I am also becoming more aware of the repeated word in the song: Everyone.

Everyone needs it–not just me.  And my mind is opening to the realization that it’s not about “just me”.  It is about more that that, it’s bigger than I can wrap my mind around at the moment.

Savior
He can move the mountains
My God is mighty to save
He is mighty to save
Forever
Author of Salvation
He rose & conquered the grave
Jesus conquered the grave

He is able to save. He can move the seemingly impossible mountains. He can heal autism. He can heal me. He can choose to do either because He is God, and He is Holy.  He does what is right.  Whether he does what I wish for or not, He can do it.  And he is good.  Good no matter what He chooses–to heal or not to heal does not change the fact that He is good, He is holy.

So take me as You find me
All my fears & failures
Fill my life again

All my fears and failures are so plentiful. I have doubted God.  I have thought he tricked me by giving me so much.  But He takes me anyway-a heap on the floor, emptied at His feet. Ready to be filled again.

I give my life to follow
Everything I believe in
Now I surrender (I surrender)

I give my life again to God.  I surrender my will, my child, my life.

I trust Him.  It’s bigger than me, so much bigger than me.  My hearts been broken for those who don’t know THIS God.  Those who don’t know, yet have to deal with all the nastiness this life can bring.

If God can do more to help them by allowing Sketch to have autism, than if he does not… If He is saying to me that He will use my life to help people know Him, because of my kids with autism…so they can rely on the same promises that have saved me…then it’s ok. It’s OK if Sketch has autism.

It’s ok.

God has a plan in this, too.  He is Mighty to Save.  He has promised to never leave me or forsake me. He has promised to help me. I am not alone in this.

With God, I can do anything. With God, I can do this.

I can raise this autism family, as hard as I fear it may get at times.  God promises me He is here with me; He will strengthen me and He will help me.

Savior
He can move the mountains
My God is mighty to save
He is mighty to save
Forever
Author of Salvation
He rose & conquered the grave
Jesus conquered the grave

Shine Your light &
Let the whole world see
We’re singing
For the glory
Of the risen King
Jesus

This is what this life is about.  To let the light God has place in me shine for all to see.  For other autism families to see that light and have hope.  Hope that leads to Saving.  They need to know this God that is not overwhelmed by what overwhelms us, but who sees all that goes on and reaches his hand in and helps.

You’re the Savior
You can move the mountains
Lord You are mighty to save
You are mighty to save
Forever
Author of Salvation
You rose & conquered the grave
Yes You conquered the grave

“I give him to You, God! I give him to you!” I cry out.

My voice paves a path for the Holy Spirt to reach down deep and pull up my will.  My voice hands it over to God. It’s not about my will. It’s about His.

As I consider that God really does keep his promises, and that what is too much for me, is not too much for Him, another song reaches my ears and I realize how I had put Him in a box and made him stay there.  On this weekend, God revealed to me some of his Bigness, and I have been blown away.  A complete paradigm shift took over my thinking and along with it, I realize how I had limited God in my mind.  The song is Be Magnified. It’s lyrics are the perfect prayer from me to God.  Humbled, I sing:

Be Magnified
I have made You too small in my eyes
O Lord, forgive me;
I have believed in a lie
That You were unable to help me.
But now, O Lord, I see my wrong
Heal my heart and show Yourself strong;
And in my eyes and with my song
O Lord, be magnified
O Lord, be magnified.
CHORUS:

Be magnified, O Lord
You are highly exalted;
And there is nothing You can’t do
O Lord, my eyes are on You.
Be magnified,
O Lord, be magnified.

Be magnified, O Lord
You are highly exalted;
And there is nothing You can’t do
O Lord, my eyes are on You.
Be magnified,
O Lord, be magnified.

I have leaned on the wisdom of men
O Lord, forgive me;
And I have responded to them
Instead of Your light and Your mercy.
But now, O Lord, I see my wrong
Heal my heart and show Yourself strong;
And in my eyes with my song
O Lord, be magnified
O Lord, be magnified.

A fresh memory floods my mind.  God reminds me of that day with Dash and the Princess, when He showed me how perfect He made them.

And  again, this truth comforts me:  God knew all along that Sketch would have autism.  He made him that way on purpose, for a purpose. He is exactly the way He is supposed to be.

I haven’t lost anything. Sketch and Dash are here, made just as God intended.  I have gained everything.  I have gained fresh glimpses into a God so big no one can fathom it. I have gained more respect for how God made all people.

Society says this is good and that is damaged; this is perfect and that is ruined. Society says to me, “How sad that they have autism.” Society says this or that will cure them.  This or that will make them more like us.

But God says these are his work of art and He is making them more like Him. Ephesians 2:10  “For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago”

I choose to believe God and in doing so, I have gone from being afraid of the “signs” of autism, to loving the the quirks and the uniqueness of autism.

I find so much joy and treasure in the way God made these boys, and I can not wait to see some of His purposes–those good things he planned for them– fulfilled in them and because of them.

Then one day when I wasn’t looking,

I found myself embracing autism.

[Click here to read part 1 or part 2.]

I Found Myself Embracing Autism (Part 2)

Tears collected in a bottle

But God was aware of just how much was going on.  He was probably the only one fully aware of it. Not a moment went by that He did not see.  Not a tear passed my eyes that he did not collect.  Not a prayer was said, that He did not hear.

He encapsulates the broken-hearted, and that was certainly me. He never left my side. He whispered in my ears encouraging words.

Not only did I feel as if I was loosing my son, but I was trapped in a terribly distorted misunderstanding:  I thought God broke his promise.

He didn’t.

Looking back, I know He supplied for all my needs in caring for Dash during that time. He prepared me ahead of time too:

The year is 2006, the twins are one beautiful year old.

I see them standing in the living room, their eyes wide open, curious.

Their hair is red!  I’ve always wanted children with red hair!  Princess’s hair is a curly spiral of deep red and Dash’s is strawberry blonde–barely visible peach fuzz.  Oh how soft it is too!  Their faces are more adorable than I could ever have imagined: quirky smiles, chubby cheeks, rounded faces. Their tummies lead the way when they waddle around the house like penguins.

“Oh Father, you made them just perfect!” I pray.

“Yes I did. They are perfectly the way I intended them to be.”

His reply catches me off guard. I am grounded: the heaviness of His presence keeps me from moving.

A moment in time I will never forget.

And one of the reasons for that moment, was a line of string he was weaving in His tapestry of my life. He was preparing me even then, for the discovery of Dash’s autism.

God is Holy.  He doesn’t make mistakes. He knew then, that Dash has autism.  He knew he has autism and he declares him perfect. He says they are just the way he wants them to be.  He says:

“So God created mankind in his own image,
in the image of God he created them;
male and female he created them.” (Genesis 1:27)

He says, “God saw all he had made, and it was very good.” vs. 31

Who am I to tell God he is wrong?  Rom 9:20b  “Shall what is formed say to the one who formed it, ‘Why did you make me like this?”

So I accept it.  I accept that God knows what he is doing and has a purpose in it.  I see the beauty that God crafted throughout my child with autism, because of the autism.  I love him exactly the way he is.

And I give him back to God; I give him to God to fulfill his purpose in Dash’s life.

______________________

But what about Sketch? I can’t let Sketch go, too. I can’t loose both my boys!  I can’t go through this again! I can’t!

Yet it happens.

It is Spring, 2007 at China Lake Retreat Center.  I am on a weekend retreat with the women from my church.

I hear the testimony of a lady who has been in Pakistan as a missionary.  All four of her children and her husband were there for the past year, living in terrible conditions with threats on their lives for most of the time.

She talks about how one day her husband leaves with the children to go teach at the school.  They were warned to stay in hiding; that their lives were in danger. He wants to go anyway, and she is at her home alone, arguing with God.  Afraid that her family will be torn away from her…her children, gone.  God asks of her, “Who’s children are they?”  And she knew He was asking her if she would trust Him with her children, no matter what the outcome.  Did she really give them back to God? Or does she cling to them and protect them from the God who saves?

And that was the question He was asking of me.  Her words, His words, speak deep into my soul, to places that until that moment, I don’t know exist.

And I realize I have not given my almost two-year old  Sketch over to God like I gave Dash. I wanted to keep him.  I wanted him to be mine.

But God was asking me to give Him back.  To trust Him with Sketch’s life, that He knows what is best.

“Savior, He can move the mountains, He is Mighty to Save, Jesus, Mighty to Save.”  We sing the song.

But He wasn’t moving the mountain of autism.  He was moving the mountain in my heart.

He is able, but chose not to save Sketch from autism, to not heal him.  But instead he healed me.

TO BE CONTINUED (again!)

[To read part one, click here]

I Found Myself Embracing Autism (Part 1)

Accepting autism when it’s your own child is hard. Embracing it is even harder. It pretty much requires divine intervention, especially when an additional child is being gripped by it.

The year is 2005.   Dash is precisely 2 years, 7 months old.  Although he won’t be officially diagnosed for a few more months, I know he has autism.

I take him to Dunkin Donuts.  His eyes miss mine as he looks somewhere else. Something out the window catches his attention (I assume) as I order donuts. He doesn’t notice the people; doesn’t acknowledge anyone in the store. We sit down, he stares out the window and spins his body in the bench seat.  I look for a highchair to help contain my bolting-prone toddler, but there are none.

“What a difference” I reflect.  “When I brought Princess Buttercup here early today, she waved at the cashier, pointed to what she wanted, interacted with people and interacted with me.  With Dash I feel like I am sitting here alone, but with a busy child beside me. Maybe he doesn’t like it here.”  I have a sudden urge to escape from the building.  Memories of working with people with disabilities start to flood my  mind.  “No.  It’ can’t be.”

“Let’s go, Dash.”

I carry him out.

He screams.

I am confused. He didn’t seem to be enjoying himself, didn’t eat the donut, didn’t interact with me, so why is he upset?

We go to the grocery store to grab a few things on the way home. I put Dash in the grocery cart and drive it over the bumpy pavement of the parking lot. Dash covers his ears.

“No!”

While we go down the freezer isle, he puts his fingers up in front of his face and wiggles them…stares at them wiggling back at him.  He never did that before (and he hasn’t done that since this day).

And I knew: my boy-twin has autism.

______________________

Crushed, I searched the internet.

What is the big deal about pointing anyway?  And who cares if he doesn’t have eye contact…like, ever.  In some cultures that is normal–but not ours.

What’s wrong with his sing-songy voice that has no words? He sounds like a Baby Einstein Puppet and I love that!

Yes he can’t sit still. Yes, he likes to bounce a lot. Yes he likes to squeeze through tight places.  I love that.  I love that his version of a “hug” is to lay behind me on the couch. What is wrong with that?  Nothing!  Nothing is wrong with that, but it’s listed here as a sign of Sensory Processing Disorder which is part of autism.

“Any loss of speech, babbling or social skills at any age”  I read. Oh.  Well, yes. He used to say “Thank you”, and “Good Job” and one time he even made a clear sentence, “Good Job, I ate the whole thing!” at a restaurant.   He started to do many skills that never quite completely manifested.  What I now refer to as “Peek-a-boo skills”.

The more red flags I learned about, the more it fit.

I try to sleep. I pray, “God, please do not let this be true!  Please, God!”

Silence.

______________________

I felt like I was loosing a child. Every time I saw him or his twin sister, I was reminded that things weren’t ever going to be the way I had imagined.

I didn’t know if I’d ever hear him speak; ever hear the word, “Mommy”.

I had always imagined him having friends, but now I have reason to fear that he won’t be able to make them.

I never thought I’d fear my child would not be invited to birthday parties, I mean that is just a part of childhood, right? Not.

Dreams were broken, shattered. All in an instant, the future was uncertain and scary.

I knew I did not want to deal with case managers and meetings and plans and reports. Not again. I had been their on the other side of the table. I’d heard the parents concerns, complaints, attempts at advocating. I’d seen it done well and not well. I did want either part.

But there I found myself.

I called a friend and told her what we were going through.  She said three words to me, that shook me to the core:

“God is holy.”

My thoughts ran: He doesn’t make mistakes. He made him the way that he is for a reason. He knew Dash has autism, and He didn’t do anything wrong in making him that way. He is holy.

____________________

Dash was the most hyper-active child I’ve ever seen. He was fast and impulsive, and relentless. He could terrorize a room faster than any other child. Ever.

He also was adorable, funny and cute.  Irresistible.

But he was hard, very hard, especially when it came to naps.

At age two he suddenly didn’t need them (not) and apparently he thought he didn’t need to sleep at night either. We were up until 2 am often trying to get him to sleep but he wanted to run from one end of the room to the other, crashing into walls. We had to watch him all. the. time. Even leaving him long enough to use the restroom left him enough time to run out the door, or hop into the sink, or dump the contents of the refrigerator. Exhaustion does not come close to describing what we experienced.

So when the twins were four and Sketch was two, and we started to see the signs, the red flags…well, I was just not ok with that. Not at all. But it was happening anyway. Apparently God wasn’t aware that this really was too much.

(TO BE CONTINUED!)

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.”

%d bloggers like this: