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Small Success

September 24, 2011

Bear didn’t do quite as bad yesterday.  Rett is obsessed with fruit snacks. I’ve never let him have them. Did you know they are one of the leading causes of cavities in children?  When I finally got around to getting gummy vitamins for the kids, I called them ‘candy’ like the rest of the medicine they take.  My kids don’t eat candy so this probably isn’t the best tactic but they take their medicine easily.   Anyway, now he’s constantly bringing me these bags of ‘candy’ and begging.   So we had a bag of candy with bear.  Anything to get him to play with our best buddy.  He fed him one.  ONE. Literally.  But he did feed me 3 last night at dinner.  I bought these stupid things to help us with potty training. But I give up on potty training. Not happening. So I was pretty pleased with bear.

Tom’s dad (PaPaw for Rett) had a meeting with the director at the Speech School in Atlanta.  He took an e mail I had written with our concerns and also the traits I saw that didn’t fit the mold and had a 30 minute meeting with her.  She said that she saw some warning signs but also some traits that are not typical in Aspberger’s kids.  The speech school was sort of my last hope.  I had put a lot of eggs in this basket.  That they would say he’s fine.. developmentally delayed.. didn’t see any autism signs.  But that’s not what happened.  So now we are going forward with a diagnosis.  Right now it feels like we are standing at the entrance of a very scary forest and as long as we just stay out here we don’t have to really fess up to what’s going on.  I want to help Rett but I don’t want to face a reality that may be here permanently. I still want this to be something we can help him ‘out’ of.

Both of my kids have theme songs.  Evie’s came from a waterbirth video I saw on youtube.  I had been really searching for a song for her while I was pregnant but nothing really clicked.  Her song is Lullaby from Dixie Chicks (or chix or whatever).  It played while I was giving birth but when you’re giving birth your choice of music selection doesn’t really matter as much as you would think. I sang that song a lot to her when we were cuddling so much when she was teeny. And I still sing it to her. Especially when she is pissing me off. To remind myself of our theme song. ‘How long do you want to be loved? Is forever enough? Is forever enough? How long do you want to be loved? Is forever enough, because I’m never, ever giving you up.’  And even though she is a maddening child at times, she is mine.  Rett’s theme song came from that movie Step Mom.  Its the song that she sings to the little boy when he is in the hospital with a broken.. arm? ‘If you needed me, I would come to you. I would cross the sea for to ease your pain’.  I sang that song when I rocked him in the NICU and I felt so utterly helpless to do anything. Every time I tried to feed him, the nurses told me I was doing it wrong. He was too warm, too sleepy, too whatever.  Every time I tried to change a diaper or get him dressed, I was doing it too slow and his temperature would drop.  They would take over.  But I knew someday, SOMDAY I would know what to do and I would be the one to help.  And here I am.  I made that promise to him when he was still in my belly and now I don’t have a choice.  Because he’s mine.

I have to report on our transition meeting with the school system. I would love to tell you that I was wrong and that they had a ton of programs to offer me and that the public school system is just what you need if you have a special needs child. But.. they suck. I will tell you that straight up.  I’m not saying their job isn’t hard (I’ve been there, its hard). I’m not saying they don’t care (I’ve been there, I cared). I’m not saying they aren’t trying (I’ve been there, I tried). But they aren’t the best.  They are a band aid, they aren’t the cure.  This is what they offered me, four half days of preschool in a classroom with 4 other kids that had a variety of issues.   This sounds great.  The way they offer this. They are almost as good as used car salesmen.  But the fact is,  this teacher is not trained to deal with an Aspberger toddler.  She doesn’t know how to teach pretend play directly.  It would be easy to send him there four days a week and blame them when it didn’t work.  But I’m not looking for easy. I’m looking for help.  So I said no. And I took my two children who destroyed their room and left.   And I knew that free help is as good as what you pay for.  Worthless.

I then went home and called our Early Intervention lady, Lisa. So far, she has also been worthless.  But I haven’t given up hope.  I wanted to find out the name of the person locally that can get us in for a diagnosis before 6 months which is the typical wait time here.  She was at a conference.  A conference for teaching autistic children on the Aspberger’s end of the spectrum.  She is excited and full of ideas and told me that all these things she said were wrong (which I already knew) and she gave me a ton of other people to call and contacts to make and Lisa is not worthless anymore!  God doesn’t answer my prayers for miracles. Doesn’t happen for me. But He does put people and information and a way to help myself in my path. That has always happened for me.  And He has made me a person that doesn’t sit around waiting for money to fall out of the sky. Because for me, that doesn’t happen. But when I work for something,  things click into place.

Yesterday on our way to the stupid school meeting, Rett found a yellow leaf on the ground. He carried it in the car and once we got to the school he threw it down on the ground by the car. When we got down with our stupid meeting, he was delighted to see his leaf was still there. And we bought it home and put it back in the yard.  So I decided to do leaf rubbings.

My child does not like art.  I also did not like art. I wasn’t good at it. I wasn’t patient enough and detail oriented enough to make it look right.  So I didn’t like it.  I was taping the leaves to the table which Rett wanted to untape, which pissed me off.  Getting an activity set up with the 2 year old in front of you is probably not the best idea.  But we got through it. Once I had gone through this whole process, I then grabbed his hand to show him how you color over the leaves to make the veins and leaf shapes show through.  This pissed him off and he didn’t like it.   So I did it myself. And showed him. And hung it on the wall. And then he untaped all the leaves and played with them.  He really likes our lamosa tree leaves. They tickle. He hid behind them and peered out at me. We had leaf sword fights. We talked about small leave and big leaves and tiny leaves and medium leaves and soft leaves and crunchy leaves.  And we had fun.  Not doing art which both of us doesn’t like. But when the leaves are gone, our art is still on the wall to remind us of our fun time.

Then I made this. Our leaf mobile.  Which I think we both enjoyed more.  I’ve been trying to get Rett to show excitement and pride in his art work for a long time.  It was something he wasn’t doing and I knew he was behind even before we got into this whole circus.   When my mom came over he ran over and pointed to the leaves hanging from the ceiling ‘Look! Leaf!’ he shouted excitedly.  And that’s when its worth it.  When you see all the practice and all the steps that you’ve done to get to this point finally pay off.  Of course he could care less about the leaf rubbings. But that night when I asked him what they were, he said leaves.  So maybe that’s a little success too.

The mobile idea I stole from another homeschooling mom who I can’t remember now. She made an art activity using old wall paper samples and cut out leaves and hung them. Her mobile was a lot prettier. She used fishing line and hung it in front of a mirror.   But I’m a knitter and I like ours.  I attached clothes pins so that we can do other projects and trade it out. Maybe this new way of displaying his art work will make him more excited.

And this idea reminded me so much of teaching and the lady that taught behind me, Teri.  She was one of those hippie type teachers. She had fairy houses in her kinder room and they rubbed lavender oil on the person they hurt and said ‘I’m sorry for hurting my friend’.  She was really out there sometimes.  But I loved it. I wanted to come play in her room.  She cooked with them and made messes with them and she loved them.  And she inspired me to make wooden leaf mobiles that aren’t pretty but children don’t care about pretty.

The last thing I’m going to leave you with today is a fantastic resource,  This mom has it seriously going on.  From pretend play to art activities,  she’s a preschool teacher turn stay at home foster mom that is full of amazing ideas to integrate sorting, counting, color exploration and just good fun.

Now to enjoy my weekend.

2 Comments leave one →
  1. September 24, 2011 3:22 pm

    I love your honesty and how you are journaling ALL of your feelings-not just the ones you think people would want to hear. I haven’t always been good at that, and I wish I would have been more honest in the beginning.

    I also wanted to comment that I think God performs miracles in our lives through other people and through the person he helps us to become. Often, what we need most is not to have the challenge removed from us, but rather a way to get through the challenge. I really believe this.

    In the beginning, I wanted someone to fix my child too. I wanted to be able to fix my child. And like you, I searched through so many people who didn’t have the right answers for me. I have been told that Sam “isn’t autistic enough” or that he is too social to be autistic. Maybe it is because the spectrum isn’t his only challenge-having an extra chromosome and white matter on the brain are also giving him issues. And finding each of those problems, each of those “answers” took more countless sleepless nights and hours of searching than I can even remember. I still want to fix him. I still want him to have the very best life he can and there is nothing wrong with that. We have to have that dream, that drive to keep us going. As you are already learning-no one will ever love your child like you do. No one else will ever fight for your child like you will. Maybe the miracle is that God knew this and sent Rett to you and Sam to me, because he knew we could be exactly what these children need.

  2. September 24, 2011 10:45 pm

    And I just love you, Ramona. You have always been an inspiration to me and even though I hate being on this path, I’m so glad to have such a great friend beside me to give me advice and know what I mean when I tell you how I’m feeling.

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