Sunday, November 25, 2007


I didn’t take the job, and I must say that I’m pretty stinkin’ darn proud of myself.

I met with the wonderful man who offered me the job, and it became more and more apparent that the job would have been a great match for my availability and qualifications. I kept shaking my head in disbelief as he agreed to my hours, my hourly rate, and my request to be flexible with hours if needed. His office is in between T’s new school and our home – so close that I could have gone to the grocery on my lunch hour, eaten lunch at home and thrown a load of laundry in to boot.


it wasn’t what I wanted to do.

That’s kind of a big deal, as Rob affirmed.

I’ve recently come to the realization that I want to help families navigate this huge, unruly system of the autism world. I get excited when I think about this. The more I thought about this other job, my heart sank. It just wasn’t passing the tummy test. It occurred to me along the way that perhaps this job offer was a little test for me – would I take this job for the money & convenience, or turn it down? Do I want this new career path badly enough to pass up this other job? And it turned out that I really want to explore this new venture.

I called him the first thing the next morning, and he was disappointed, but immediately pulled out his list on contacts and gave me the phone number and name of a person he knows who just happens to work for an organization that does exactly what I want to do, and told me to use his name when I introduce myself. Wow.

So I’m on to the next step. I left a voice mail for her within 20 minutes of that phone call. I’ve even decided that I’m going to have someone build a website for my vocal studio. Yes, my vocal studio. I sang at our new church Sunday night, and darn it, it felt really, really good. That got me thinking even more about what I could do to earn some money and have something else in my life other than goat yogurt, methyl B-12 injections and crazy diets.

I sing. I teach voice lessons. And I want to help other families with new autism diagnoses.

Forward, march.

Saturday, November 17, 2007

New job???

I’ve had lunch with my first contact, and we had a terrific brainstorming session. I came away from that lunch with a very positive feeling about my new direction and the possibility that there will be a job out there for me.

My goal was to make no secret of my plans. So when we were meeting with our financial planner a few days ago, I told him about them. This fun, generous man has found his niche in the financial planning world by being a specialist in setting up Special Needs Trusts for families with children who are disabled in some way. (Look for a future blog post about financial planning for your special needs child – if you are doing what you would for a typically developing child, you’re doing it all wrong.)

We were talking about if/when I’d start back working again (he’d connected me with a friend of his who is a church musician here, and we had a brief conversation about getting a vocal studio going). Anyway, since he had been kind enough to try to help me get connected musically here in town, I told him that I’ve been feeling a different career calling recently. He seemed interested when I told him that I wanted to help families of children with autism. He asked about my office experience, to which I replied that I had temped for years while getting my singing career going, working in New York City for a company which worked with companies in Chapter 11 bankruptcy, in Richmond, VA for a law firm, and in Lansing, MI for a hospital’s medical education office. With T starting at the VB center full time, I would have from 9-3 everyday to work, and was hoping to find something part-time that could work within that time frame.

So...he has a job for me. It looks good, anyway! He had a part time employee who moved on to another job recently, and he needed a replacement. He thought that one of the mothers whom he works with would be perfect, because this person doesn’t need a ton of office experience, just a passion to help special needs children. (Oh my God.) The job would be lots of paperwork – keeping up with the filing & copying after he meets with a family, and I know I can do that. But the important part of the job that’s really exciting: this person is going to be the contact with all the special needs organizations he works with. ALL of them – not just for autism. This person would be the contact who would make contact with these organizations, schedule his presentations and maintain contact with them. I can TOTALLY do that. He just wants someone in this job that can talk on the phone and has a passion for special needs children. WOW. And he was fine with the hours I’d be available. WOW.

Okay, deep breath. This isn’t exactly the job I wanted. It isn’t helping families get to the therapies they need. It would be leaping right into 20 hours/week, when I had visions of starting off slowly and working my way up to half-time. It would also mean giving up most of my free time during the day when T is in school.

On the other hand, it would connect me with a ton of special needs organizations. Talk about learning the system. It also would work with my schedule, and it is ridiculous how conveniently it is located to our home and the VB center. I wouldn’t have to know finance at all – the office work sounds easy, and I would be completely comfortable in the role of setting up appointments for him and talking with these organizations. The potential to make a good hourly rate is very real – it sounded like I could pretty much name it and he’d do it. We could certainly use the money. I could certainly use the feeling of satisfaction I get from earning a paycheck again. And I’d be able to pick up T when he’s done at the VB center and spend the rest of the afternoon with him. It also would not be a permanent job – I could get my feet wet with being back in the workforce for awhile, and in the meantime start working on setting up the next job that would take me in the direction I envision going, all the while earning some money again.

This has the potential to be a great opportunity. The look of stunned disbelief and joy on Rob’s face when Financial Planner & I were talking about his was priceless.

So I’m trying to think clearly about all this. It appears that a job has fallen into my lap here, although it’s not exactly what I was thinking of. I meet with his office manager in two more days, and I’ll have plenty of questions for her. I don’t want to take a job just for the money...but gosh, some extra would be nice, especially since we want to start up craniosacral therapy again, and swimming lessons…must think, must think.

New career?

I’ve mentioned in previous posts that I’ve felt myself pulled in another direction career-wise for a while now. I’ve actually been going through a pretty blue time this fall, wondering why the hell I am not making phone calls to introduce myself to musicians in my new town, why I’m not putting up posters for my vocal studio, or why – for the last several years, to be honest – I haven’t even had the desire to sing. Well, I could probably point to several different reasons, but what I’ve finally realized is that I’m not inspired to do so anymore. At least not for now. What inspires me is the idea of helping families navigate this snake-pit of a system when facing a new diagnosis of autism for a beloved child.

I came to this realization while folding laundry. I don’t know why I can really get good thinking done while I fold laundry or change sheets on a bed, but I certainly do. I was allowing myself to think the impossible: maybe I don’t want to teach anymore. Maybe I don’t want to sing as a career anymore. Maybe my life has taken such a huge change from the life I thought I was going to lead that those plans no longer matter. Those plans were for Me BCWA (Before Child With Autism). This is my reality now. Life threw Rob & me a curve ball, and we’ve either got to work with it or roll up in a ball & quit. I’m no quitter. I do like road maps, however, and any changes from my planned course of events, even in everyday mundane events, takes me awhile to adjust to mentally. So I grin at myself for taking so damn long to figure out what my subconscious has probably been trying to tell me for a long time: I don’t want to teach anymore. I want to help families with an autistic child get the therapies they need.

I knew immediately that I didn’t want to be a therapist or doctor or anyone directly giving services. I like to support – I like to help the person on the front line. All those folks on the front line need people behind them, and I’m really good at that. I’m a good organizer (although my office desk might tell you otherwise.) I communicate well. I explain things clearly most of the time.

My dream job: I want to be the person that goes along with the huge packet of information that goes along with a diagnosis. When a family gets the diagnosis, no matter how well the medical staff does with breaking the news, in the end they are still sent home, heads reeling, with a thick packet of recommendations, readings, research, etc - alone. I remember this clearly. So what I want to happen is that when a family gets the diagnosis, the medical staff says, “Here is the list of recommendations we have for your child, as well as some readings for you, and next week you’ll have an appointment with ‘Tommysmommy’ and she’ll help you decipher all this and maneuver the system.” THAT’S what I want.

The funny thing was that once I realized this, I sent an email to the first person I could think of already in the system, asked her to have lunch with me to help me brainstorm, and we had a lunch date set for 4 days later. No stalling, no making excuses. I wanted to make this connection. Guess I’m on the right path.

Monday, November 05, 2007

First Day at Center

Our little guy is such a trooper. Today was his first day at the Verbal Behavior school – still half time for the next two weeks until he starts full time two weeks from now. I talked to him often this morning about going to see his therapist at his new room in his new school – even as we were in the car driving there I was easing him into what was in store. He’s never done VB anywhere but home. We arrived, and his BCABA came out to the car to greet us and take Thomas in. No big deal –he just took her hand and went with her. I followed, bearing a few more things for his room.

I was at the Center for probably about 45 minutes total, between loading more furniture in and meeting with the business manager to clear up a mystery EOB from our health insurance carrier. I could not help but hear the noises around the building – the entire time, some child was crying or tantrum-ing due to the transition to the new building. Routine and sameness are huge for these kids – talk about jumping off the deep end from all that! When we arrived, one little girl was in the parking lot, screaming & crying, not wanting to go inside. Many kids were have a rough time today. This was expected by everyone involved, and everyone was appropriately patient & understanding. Our little guy, on the other hand, just walked right in and while he did explore, just made himself right at home. This is what I’m talking about when I say that our little guy is one easy-going, sweet-mannered boy. It’s no mistake that I call him my angel boy - I've often said that if this is what autism looks like for our boy, then we'll take it. When I picked him up, I heard from more than one person there that he had a very happy day. Relief! (And nice that Mommy had time to go get a latte at Starbucks and read for an hour. Lovely.)

The other thing that sunk in today was just how much these people love our kids. Most of these therapists are young folks right out of college – maybe they taught for awhile – but they have no direct personal link to autism. They just were in the right place at the right time, found their niche, and are doing the most fabulous work with these kids who can be very difficult to teach. The dedication and devotion to each kid at the center made my eyes misty more than once. I am feeling very blessed today.

Sunday, November 04, 2007

Cheese or Super Nu-Thera?

T has been a different kiddo the past few days. As I see it, there may be two possibilities for the change – and the changes are mostly good ones. I’ll detail the two below, but let me talk about the changes themselves. The screaming when thwarted has returned, but that’s about it for the negative. Tonight, he watched a football game with us, PRETENDED TO BE AN ELEPHANT (said “elephant” and crawled on the floor, making a growling/trumpeting sound), PRETENDED to water the houseplants, said “night night Daddy” unprompted, is happier and smiling more, and honestly, when the shrieking occurs, it’s because he’s been thwarted and is justifiably frustrated. Overall, we had more presence from him these past few days than I’ve seen in a long time.

I can count on one hand how many times he’s engaged in pretend play.

So, the possible culprits: cheese or Super Nu-Thera. Only it’s not what you’d expect: we’ve ADDED cheese and WITHDRAWN Super Nu-Thera. (SNT is a mega dose of vit B6 which he’s been on for at least two years.)

It will come as no surprise that I’ve been questioning seriously the dietary interventions for the past month or so. A few days back, we had the great joy of having a play date with some friends from Small College Town – it was great to see the kids together again and catch up with their mommy, who is my lifelong best friend whom I just met two years ago. Ever met someone like that? Anyway, her kids had Colby cheese slices as a snack, and two pieces were left out on the kitchen table. I’ll admit that I wanted to see what would happen. T never even put orange cheese to his lips before – it had to be mozzarella string cheese or it wouldn’t be eaten. Lo and behold, he saw the cheese, and it almost looked like he was slowly moving in for the kill. Approaching slowly, looking at it from a few angles, he reached out and picked up a piece. I watched the whole thing. He put it to his lips, decided it was a go, looked directly at me to see if I would scold him (which I did not), and he took a bite - and another, and another. Soon, both slices were gone. I let him do it because darn it, he’s looked so pale and been so sickly lately, and he’s really been a hungry little guy since the antibiotics kicked in for his ear infection. The next day, I asked him if he wanted some cheese. He said “Cheese”, and watched me intently as I sliced more Colby for him. He’s had cheese (hello DAIRY, hello CASEIN) for the past 4 days. Stools haven’t changed markedly.

Note: he also had a few tortilla chips Friday night at our favorite Mexican restaurant. Okay, here’s the thing with all this: the entire time he’s been on this diet, only one other time did he go for foods that were “illegal” – he’s only eaten foods that were put right in front of him. He’s been an incredible trooper and only eaten his food – and this has been remarkable.

I guess I want to see if there is any difference when we add these foods back in. But I’m doing this at his instigation. I didn’t put the cheese out at first, and hundreds of times in the past 10 months, he’s ignored illegal foods. It was his idea to reach for the cheese Thursday, and the tortilla chips Friday – they were not offered.

The kid wants food back.

We also took him off Super Nu-Thera at his DAN doc’s suggestion, when we were struggling to come up with what could be causing the soft stools/diarrhea. He’s been off it since 10/18. So that could be the reason behind the happier behaviors, if the SNT was disagreeing with his system.

Okay, and he’s also been on a 10 day round of antibiotics for that ear infection. So I suppose the changes could be from that, too. He had his last dose of it today, so I’ll keep an eye on all this and report back soon.

But this has been SO COOL!

Move in to new VB building

Just had to report that we moved T's things into the new VB building this afternoon. We are so excited and still in a bit of disbelief that we are part of this organization during such an exciting time. He has his very own room - as do all the students there. He will continue to be part time in the mornings for another two weeks, then he'll start full time on Monday 11/19.

I took him there Friday afternoon after all his things were set up, and he did really well. No "pinballing", as I describe it. (Pinballing usually occurs when he is in a new house or building - he walks quickly from lightswitch to microwave to garage, dodging my attempt at a calming grab each time. I seriously made myself motionsick at the beach once, trying to keep him from running into the ocean.) Instead of his usual pinballing, he was very curious and interested, taking it all in, and was comparatively calm.

It was cute actually - his current therapist was waiting for him in his room, but as we came in the building, his BCABA/program coordinator saw us and word spread quickly that T was in the building. She and every other therapist who has worked with him this fall walked with us to his room, and while he looked around, they all hovered outside - kind of like the end of Wizard of Oz when Dorothy wakes up after her dream and everyone is surrounding her. It was so wonderful.

Tomorrow is his first day doing VB away from home. More to report soon!