Thursday, April 29, 2010

TV interview

I was interviewed on camera at work today to comment on a local news story about an 8 year old boy with autism who was restrained in a chair with a belt, double-knotted, in the corner of a classroom. This child had just moved into this school and mom came to the school for his move-in conference. She stopped by to see him, and that was what she found. Her non-verbal son, who would not be able to tell her about what happened at school that day, was tied to a chair and left. Three adults were in the classroom: a teacher and two aides.

This is legal in Indiana.

When we got word at work that an investigative reporter wanted to interview someone from our office to answer the questions of 1) how can this happen? And 2) how could this have been handled better?, the brainpower in that room was electric. Should we take the interview? Shouldn't she be talking to the Department of Education? Do we need a lawyer? What was the situation that led to this? Was he hurting himself or others? Was this a stupid decision by untrained staff? Does he have a Behavior Intervention Plan, and was the new school aware of it?

Thing is, Indiana law allows this. Honestly, as despicable as the thought is of a beloved non-verbal child being restrained, the teachers are put in a no-win situation at times. We don't know the full situation here, but looking at the larger situation, there are children who are flight risks/wanderers, as well as children with extremely challenging behaviors (throwing desks & chairs, destructing property in the classroom). The teacher can't deadbolt a classroom door or put up a baby gate or some other safety barrier because it would break fire codes. Upcoming budget cuts promise – it's been announced – that instructional aides in elementary schools will be cut. Okay, so we can't lock a door or keep a child from bolting out the door, we reduce staff, and there are students that are escape artists or have "behavior issues". Is strapping them to a chair acceptable to keep them from escaping or from injuring another child or staff member? It's legal and it's sickening and it's heartbreaking. The subject of the story hit too close to home: and 8 year old boy, non-verbal, with autism. My son would not be able to tell me if this happened to him. And yet, what are teachers to do without the training and support that is needed? Good luck getting 1:1 aides for your child with these challenges – they are tough to get and again, with budget cuts, schools do not want to commit dollars there.

It's a mess, and my heart breaks.

Turning this to me for a moment, I was SO filled with angst before this interview. I did not feel that I had enough knowledge about Seclusion & Restraint to talk about it in any coherent way. I also feel that I am not good thinking clearly in high pressure situations – I need time to process, to research – and I did not feel at first that I was the right person for this interview. However, as the brainpower session continued, I offered to do it (even though I had initially said I wouldn't.) Despite the terrible subject we were discussing, as I was deciding whether to do this or not, I received the nicest, most genuine compliments from my colleagues. They all thought I was the right person to do this. Nothing disingenuous at all. I began believe them, to think that I really was the right person to do this interview, so I did it. I still was desperate not to say anything that would make our organization look bad, or be an inappropriate statement coming from our organization. Our marketing director sat down with me and was so terrifically helpful – listened to what I would say if that parent had called in, and helped me identify my own talking points. And I did it. So I know that this day, this story was not at all about me. But the process turned out to be so affirming of my abilities and talents. I think I am good at this.

Now to hug T.


Wednesday, April 28, 2010

Hearts on Fire: Gentleness. My personal statement at church 4/25/2010

I am a special needs advocate. Let me start by saying that I love this new life of mine. It is not at all what I thought my life was going to be, and it certainly has its heartbreaking & challenging moments. However, through this new life, I see that God is with me every day, working with me, worrying with me, guiding me, and sending angels to help. Serving this population reminds me daily of what is truly important. It is not about acquiring things or being fastest, richest, and most "successful" as our society defines it. It is, however, about love, relationships, and a good dose of justice.

My life BC (before children) was all about music – and particularly my singing career.
I travelled & sang professionally, lived the life of a starving artist, and after Rob & I married, started teaching at the university level. I was living my dream of making a living off of music, and loving it.

Fast forward several years. Our first child has taken his time learning to crawl & walk, is not babbling as expected, and does not play patty-cake. It is our long-anticipated and dreaded "diagnosis day". The child psychologist gently says to us that it is their opinion that he meets the diagnostic criteria for Autistic Disorder and Severe Receptive and Expressive Language Disorder. Time is given for us to process, recommendations are given to us, and we start the long drive home to Bloomington. As thorough and professional as the day has been, at the end of the day, we were sent home with a thick packet of information, an invite to stay in touch if we'd like, and well-wishes. "Good luck", essentially.

I recall the following months & years: so many systems to navigate, so much information out there. I wanted a reliable source of information – someone to guide me. I kept thinking I had all sorts of tire spokes of help but no hub. It's not like you get a diagnosis for your child and they implant a microchip in your brain to know how to deal with insurance & schools, especially while your world has just been rocked to its core and your brain is spinning and grieving.

We moved to Indianapolis almost three years ago. I initially thought "Ah, here is my opportunity to get a vocal studio going again!" And yet, once we moved here, I found any reason I could not to make the phone calls, connections and introductions I knew I needed to in order to be a professional mezzo soprano here in Indianapolis. I didn't want to be a professional musician anymore. But, once I allowed myself to make the unthinkable realization, I felt such freedom & relief. Then the next big question came: so what do you want to do now?

More weeks of pondering, praying. And then it came to me: I remembered that "diagnosis day". And I realized what I wanted to do: I wanted to be the person that went along with that packet of information. I wanted to be the person who would hold a family's hand once they got that diagnosis, and guide them to the help that was out there so no one would have to do this on their own again, like we did.

So I started talking to anyone that had any manner of connection with the special needs world.
I now work at ASK (About Special Kids), a non-profit state-wide organization that directs families of special needs children to the resources and supports that are out there. Any question that a family has, we can help them – free of charge. I love this work. Yes, most of my time is spent listening to heartbreaking stories and the unfair problems that these families have to face. For a majority of the families, I am helping them fight for their child. But I am holding their hand through it, and they do not have to face it alone. There is help. We can make the world a gentler place for these children. It is my ministry. It sets my heart on fire.

Many families with special needs children simply don't go to church because it takes real work to have their child participate or even be present in Sunday school or in a worship service. Our experience here at North has been such a lesson in acceptance, diligence & willingness to make this work. On our first Sunday visiting here, when we got to Miss Dana's kindergarten classroom, we took a deep breath, and started in on our mantra, explaining how our child Thomas has autism, and that means….and Dana looked at us, smiled and said "I've been teaching special ed for 20 years." Moments later we were here in the worship service, our hearts at ease, knowing that he was well looked-after for that hour. And we could have an hour in church, an hour to restore & rejuvenate, be present with God, and gather the strength for the week ahead. Last January, Janet called us to start the planning & discussion about moving Thomas up to the 1st grade Godly Play classroom that following August because she wanted to make sure that they were prepared for him and could provide an environment that would work for him. She beat me to this! That is a stunner. I applaud North's Radical Hospitality initiative and pray that we will all move forward with this, especially welcoming those with special needs and developmental disabilities and their families. What a gift to have a place that is loving and accepting, especially in this world that is not particularly gentle.

These children, (who will grow into adults) require a gentle world. Many times, it simply would be easier just to stay home and hide. But we cannot. Because these children – my son included – have so many gifts to offer this world. I know this because the pe ople who have taken the time to let my son into their heart and get to know him, feel better around him. There is nothing like his smile, his laughter, and his eye contact. It is at these times that I truly believe that I am seeing God. God in action, God through him, God in him. God in these children, in these people. I am so thankful to this church for being a place of gentleness for Thomas.

It is what we have found so far at this church, and what we hope can be offered to even more children & adults with special needs & developmental disabilities here in this place, among these people.


Doctor’s visit tomorrow

We go see T's "DAN" (Defeat Autism Now) doctor tomorrow. It's been a couple of different months for us, and I'm a little anxious about this appointment, honestly. I'm so darn concerned about pleasing people and not disappointing them…so it will be interesting to tell her that we stopped ALL of his supplements for a while this winter, and we haven't brought him in to do the fasting blood work she requested two visits ago. She wants to get him back on the prescription chelator (to detox him), and this blood work she wants needs to happen when he's not eaten. I fully admit I've dug my heels in on taking him in. Nope – didn't wanna do it. How hard does this all have to be? The regular tests weren't good enough? Honestly, how long will my brain allow this: we can only do certain tests from certain labs, and the labwork that's done in most other labs isn't going to find what we're looking for…and voila! The special labs found a problem when the regular labs didn't! Stunning. Really? Yep, turning into a skeptic. Anyway, we've been at this so long now that I just wasn't sure if they were helping. The expense is beginning to weigh on my mind – I'd pay just about anything to keep a supplement going if I knew it was helping, but without any evidence, I was beginning to doubt.

That's the double edged sword of the biomed world of autism. You get your hopes up again, and once again, autism isn't defeated.

So the supplements stopped, and we did see a difference – and one we didn't like. Grumpier. Not too playful. Where did our smiley guy go? Heaving a heavy sigh, we slowly reintroduce the supplements one by one. The good thing is that I can now say, without a doubt, that a few of them truly do make a difference for him. This is good, regardless of my skepticism. Probiotics (Threelac, specifically) and Cortrex (adrenal support) – big bangs for our buck. The others are pretty basic – Vitamin C, Vitamin D – so those will stay. And we've started another one – but haven't seen any change yet.

Sometimes this feels like I'm a cat trying to catch the elusive laser point dot on the ground, then the wall, then back to the ground…all the time the person holding the laser pointer is laughing because IT CAN'T BE CAUGHT.

Having said all this, since we reintroduced some of these supplements, he's been one happy guy. I know how blessed I am to be his Mama, and how lucky we are when I read & see what other parents who have a child with this diagnosis have on their plate. T is healthy & happy, gentle & funloving. He's doing well with the 2 half-days/week in the public school's TEACCH classroom, and continues to progress with the 30+ hours/week he gets of ABA: Verbal Behavior. We're in a good groove, and it feels good.