ONE FINE friDAY

I awoke this morning, vomited, chewed up two pepto pills and prayed that I could make it through a three hour meeting without puking on anyone with the power to negatively impact my children’s educations.

Half an hour later, I repeated the cycle.

I dropped the stemmers at school at 9am, ran home and repeated it a third time.

At 10am I arrived at the school and joined the room full of people who had gathered to decide where and how Sofija should be educated.

She will attend the school we prayed for.  She will be loved (They already love her :)).  She will get to ride a school-bus every morning (She’s ecstatic about that part).  Her current school will anxiously await her return as soon as she’s ready.  I did not cry alone in that room and there’s something about seeing other people cry over the future they see in your child that brings unexplainable peace.  As I arrived home, I became once again aware that my belly was still burning, but it didn’t really matter.  The glow in my spirit was burning much brighter.

God’s handprint was on every second of the morning.  As I sat to reflect on this fact,  Sofija came skipping into the family room.  She turned and skipped out as quickly as she had entered and in the process, without ever looking up, she shouted out, “Love you, Mama.”

Before I exited the building at the end of the morning’s three hour meeting, I saw Seth carrying his lunch tray through the office with a counselor.  He winked at me and said, “We’re having a lunch date.”  When I picked him up from school and asked about his day, he told me that he had an amazing day except for the part when his friend told him a very bad joke.  That’s why he needed a lunch date with a counselor.

Me: “What kind of bad joke?”

Seth: “The kind you don’t want to hear.”

Me: “Seth, tell me what you heard.” ~ I then prepared myself to hear something vulgar come from the mouth of my precious baby boy.

Seth: “He said something bad about you and then he frettened you.  He said (long dramatic pause with head bowed, eyes closed and in a much quieter than normal voice), “Step on a crack, break your mama’s back.  You stepped on a crack and broke your Mother’s back.  Now your Mom is gonna die.”

Me: “Seth, did you know that’s ju…” ~rude interruption

Seth:  “MAMAAA!  Did you hear me?  He was trying to make a joke about hurting and killing you.  Somebody needs to teach him that it’s not a joke.”

Me: “Seth, did you hurt him?”

Seth: “No, Mama.  But I did a great job of protecting my family. Huh?!”

Now you might think the day just couldn’t get any more entertaining.  But you’d be thinking wrong.

We learned earlier in the week that there is a potluck dinner for families with special needs children on the last Friday of the month at our local military installation.  The director of our local Army Community Service center left a message this morning asking us to attend because there was another mom that she really wanted me to meet.  I had managed to keep down a bagel so I thought the experience might not be so bad.  For me and the stemmers, it wasn’t.  For my dear husband and teenagers, it was torture (Although they let out some pretty hearty laughs watching a group of the kids doing Wii dance sensation) .  Waaaay too many women for the husband.  Waaaay too many stemmers for the teenagers.

On the way out the door, Chase (the 13yo) was complaining about Seth’s “pretending”.  For those of you who don’t know.  Pretending is Seth’s word for his stemming.  A common phrase in his vocabulary for several years has been, “AGGGHHH! Stop! Interrupting!  My pretend!”

He is like a little sound machine.  If you’d like to see for yourself, he can be seen on any afternoon pacing the walk between our front door and the driveway while making sound effects and sporadically bouncing or swinging his arms in the process of  slaying dragons or acting out whatever scene is playing in his head.  It is NOT normal pretend.  It is loud and it is constant.  It is filled with twitching and jerky movements and shrill awful noises.  And it can make Chase crazy.

So there was Chase complaining about his brother’s pretend and how the noise was physically hurting his ears when Kira says, “Chase, your autism’s showing.”)  This is a common phrase in our house.  When you live with two children on the spectrum, you start to notice that everyone else in the house could probably fit on it somewhere.)  Chase’s response: “I know.  I have ASD.  Annoying Sibling Disorder.”

Ten minutes later we’re in the car riding home and Seth says, “I was born to pretend.  It’s just what I was mostly made to do.”

To top off the wonderful wit of my children, I got a phone call to arrange an interview with an in-home ABA therapist who just happens to be married to a someone from Serbia and who understands the language AND I got a personal, in-depth email from THE Dr. Federici suggesting another ABA therapist and giving me his input and a suggestion on Sofija.

I’m sure that there are other moments that I missed, but that’s officially the end of the entertainment.

It’s been One Fine Friday.

I love my family

3 thoughts on “ONE FINE friDAY

  1. Angela’s stimming behavior (short for “self stimulating behavior”, for those who don’t know the lingo) is all auditory. But one is a combo oral/auditory thing with her fingers. Drives us CRAZY with the noise (not to mention it’s very gross!) And the more we draw her attention to it, by reminding her to get her fingers out of her mouth, the more she gets obsessed and does it. We thought when she got her braces on her teeth it would get better, because it would really hurt her fingers. No such luck.

    I’m so glad Sofija is able to go to the school that can best meet her needs AND make her happy, all while keeping the family in one area! I don’t know what we’re going to do with Axel yet. I need to get him under my roof first, and our district is doing lots of special ed. restructuring right now.

  2. randi says:

    What a beautiful picture! 🙂
    So glad Sofija is going to be at such a wonderful, caring school.
    We are having trouble coming up with a solution to our Frankies educational needs right now.
    Seems no one really cares to help…

    • Randi, I didn’t have much hope for Seth’s education until I grasped that I would always be his biggest advocate and that nobody would ever go out of their way to help him unless I made it clear that I expected them to. I stopped asking for permission and just started informing the powers that be. Bookmark your county, state and federal guidelines concerning special education, read them and know Frankie’s educational rights. Save the IDEA http://www.ada.gov/cguide.htm#anchor65310 in your documents. Figure out where your child would be best educated. Find all the statutes (in the guidelines that you have bookmarked) and cut and paste them into a document that you will send to the powers that be who are giving you resistance. I’ve had to do this at least a dozen times. I always start my email with, “I understand that it is your responsibility to make decisions based on the best interest of the entire education system in our (school, county, state) and I also understand that it is my responsibility to look out for the best interest of my child. In my attempt to execute that responsibility, I’ve been reading the laws applicable to my child’s education and this is what they say…
      I realize what a huge responsibility it is to identify and meet the individual needs of every single student so I am doing my part to help you identify how that can be done on behalf of my child. Federal regulations (as outlined in the IDEA “requires public schools to make available to all eligible children with disabilities a free APPROPRIATE public education in the least restrictive environment APPROPRIATE to their individual needs.”
      Follow that up with everything you can find that pertains to your child and then sign it with a simple “When families and educators work together as a team, a child’s potential can be limitless. Thank you for being a part of our team.”
      See…you’re not asking for permission, simply informing them of what you expect from them and what the law requires of them. When I became my child’s proactive advocate, I was shocked to see how many people wanted to be work with me. Isaiah 43: 18-19 “18 “Forget the former things;
      do not dwell on the past.
      19 See, I am doing a new thing!
      Now it springs up; do you not perceive it?
      I am making a way in the wilderness
      and streams in the wasteland.”

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