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 1^st 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.

From #2 to #1

The "fecal smearing", as professionals appear to call this behavior, seems to have been a short-lived fascination. Not long after my last post, I found T starting to smear his poop again. Boy, did I make a big impression on him that time. I slammed a book I had in my hand down on the bathroom counter and yelled "NO WAY. We are not doing this. You do not play with your poop. That makes your hands dirty and messy and it is not clean or safe." He looked so stunned, and immediately started crying. So I knelt down next to him while cleaning his hands and said, "I'm your Mommy, and it is my job to make sure that you are clean and healthy and safe - and THEN happy. I know it makes you happy to play with your poop, but you aren't clean when you do and you won't be healthy for long if you do. So you can't play with your poop anymore." He continued to cry, and I felt awful for making him cry, but also felt completely justified in my reaction - at first. Then of course I started doubting - should I have just ignored the behavior and tried to replace it with something else? But darn it, this was such a visceral reaction, and darned if it didn't make an impression. It has been several weeks and he has not played with his poop since.

And, as the trusted professionals with whom I consulted on this said: I rarely if ever yell at him. So even though most of the time we do want to ignore the bad and reinforce the good, sometimes the gut-felt, honest response works best.

But...we've regressed in the peeing area now. I truly don't know if it is due to the amazing growth spurt this kid has been on for the past 2 months, or if it is one of the two supplements we've weaned out of his daily menu, or if I traumatized him by the aforementioned incident and now pottying is aversive. Thing is, I won't know, either. But I am glad to report that we are now three days (almost) completely accident free. Thank goodness for M&Ms. We've gone back to rewarding dry underpants and it seems to be working. Hey, I'd work for chocolate treats, too.

His cold (nearly three weeks into it now) seems to be fading. I suppose that his system could be off due to that as well. Never a dull moment. Certainly is making me very good at hypothesizing!

Worried.

I’m feeling so very low right now.
I realize that so much of my personal feelings of satisfaction & contentment come from when Thomas is doing well. This could be dangerous, I suppose. Probably is. But when he’s our only child, and as I’ve said to people lately, we’ve put all our eggs in one basket there, it’s difficult not to feel terrific when he’s doing well, and feeling like shit when he’s not.
He’s started playing with his feces. Okay, his shit. There. I said it. It’s so upsetting I can hardly think clearly.
He’s been doing so well with potty training – even was dry for several weeks overnight. He was sleeping in underwear and was dry in the morning. But that ended over the Christmas break, and I’m hoping that once we’re truly back in the swing of a routine, it will go back to the way it was. But he’s even peeing through the overnight diaper, meaning that we have to wash his sheets and underwear & jammies almost every night. He even had a peeing accident last night while watching a video. Add on to this the new totally disgusting and disturbing activity of playing w/ the toilet water and poop, and I’m in despair. We think what he does is put one of his fingers up his anus when he’s in the bathroom by himself and pooping, and then smearing it on his shirt or legs. I even found it in his hair once.
So the obvious remedy is not to leave him alone in the bathroom. This is easier said than done, and so disappointing and frustrating since he’s been poop-trained for almost two years now. Back to endless time sitting in the bathroom with him.
Plus, it’s just disturbing, this new activity. It shows such a lack of…I don’t even know how to put it. People who care about wanting to be liked do not spread shit on themselves. Mental disturbance? Cognitive dysfunction? Psychosis? I could just cry thinking about it. What’s happening? He never did this as a small child – never. And I was so glad that he didn’t. Why now? What triggered this? Is it just that it feels cool to stick your finger up there? And he can hardly help himself around water – he could just be playing in the toilet water because he likes playing in any manner of water, but EEEWW. YUCK.
My poor boy. Now what? Are we entering into a very dark time for him? Do other more serious diagnoses or problems face us?

Good night, Goodnights?

I don’t want to jinx anything, but…it in the past two weeks (maybe more) T has had only one accident overnight. Other than that one time, he has been dry every morning. He's even been sleeping in underwear.

Could it be?

Are our days of buying diapers over?

Got the vaccine

Our county has decided to use their H1N1 vaccine supply by inocculating all the school children at their schools (whose parents have signed a release form, of course). I took them up on their offer, and T got the nasal flu mist today. He is in good spirits tonight, happy & a little tired, but earlier this afternoon, he quickly spiked a temperature of 100 degrees - but then it came down to normal w/in 90 minutes. They didn't even call me to come get him because it came & went so quickly. I'm feeling very relieved, but will still watch carefully for the next few days.

I told Rob last night that I felt like, with this decision, I was stepping off a path we've been on for 4 years and headed down a new path. Because of that, I have been feeling anxious about it. But I also have calmed myself by remembering that so much information has come to me this year about vaccines and their safety (or at least the other side of the story)...I have to believe that there was a reason for that shift, and maybe it was to prepare me to help make this decision to get the H1N1 vaccine for him. And relying on T as the best data & research we've got (and he's never reacted badly to any vaccine), we did it.

Now we wait for any reaction.

I think it is going to be fine.

H1N1 vaccine decision

We’re going to get T that vaccination. I’ve struggled with this decision for awhile, but Rob & I are in agreement. The final clincher came to me when I thought back on this year…attending the conference where I head Paul Offit speak, doing research on both the pros and cons of vaccinations, weighing our options and looking back at T’s experience w/ getting his vaccinations…and I thought that perhaps this is why all this pro-vaccine information came into my life this year. I was being prepared to make this decision. T has never had an adverse reaction to vaccines. He is fully vaccinated. He didn’t regress. And I’ve heard enough about the high-risk populations – he’s in two: 1) he’s under age 24 and 2) he is developmentally delayed and might have some neurological challenges. And I’ve also heard enough about dead kids.

I can deal with side effects. Hell, we’re already dealing w/ autism, if that’s what everyone’s scared of. But I don’t want to deal with dead.

But here’s the caveat: if at all possible, I don’t want him getting the vaccine with thimerosol. Research has exonerated this preservative, but I’m still not jumping up & down with glee over the prospect of injecting him with it. I was able to find a thimerosol-free injection for his seasonal flu shot, now I just need to track one down for H1N1. Wish me luck and good timing – it will probably have to be a “right place at the right time” sort of situation.

Now we just need to find a vaccine. Our county has held a few huge clinics – thousands of people lined up for hours – and I have not taken him to any of those. Yeah, standing line for hours with a child who has trouble holding still and exposing ourselves to all the germs that those thousands of people surely would bring…and then there would be no guarantee that he’d get a thimerosol-free version…nope…not signing up for that. So I’m praying for a calm, stress-free opportunity to get him either the nasal spray version or the single-dose injection.

Fingers crossed.