Tuesday, October 05, 2010

The Lord’s Prayer

My mind has been spinning in some very interesting directions since reading Autism Prophecies by William Stillman. He's also written Autism and the God Connection and The Soul of Autism. (I can't wait to read those.) I highlighted sections, took notes, and every time I recalled an event that I thought was wonderful and kind of spooky, I wrote it down in the back of the book. Suffice it to say, I believe this child is connected with God in a very deep, very real and possibly very tangible way.

Tonight gave me even more proof in my theory. After getting out of the shower, he gave me his usual wet hugs, and then said something that sounded like "Pray". So I said our usual goodnight prayer:

Father, we thank you for the night
and for the pleasant morning light,
for rest and food and loving care,
and all that makes the world so fair.
Help us to do the things we should:
to be to others kind and good,
in all we do, in all we say,
to grow more loving every day.

He finishes each phrase for me, and has even on occasions repeated entire phrases. Side note: one day, a few years back, one of his ABA therapists was particularly sad; her grandmother was very ill and dying in another state far away. She was doing her best to hold it together while working with him that day. When I picked him up, she reported to me that he was saying "Father, we thank you" and "grow more loving every day" repeatedly throughout the day.

Okay, how did he know to pray for her?

That's just one of the sort-of-spooky and wonderful moments I'm talking about.

Back to the Lord's Prayer: after saying our evening prayer, I thought that I should also start teaching him the Lord's Prayer that he hears every week at church. So I started to speak the words, and he looked at me, smiled broadly, and started jumping and dancing around! I've written before about this child being excited to pray, and here he is again, literally dancing with joy hearing the words Jesus taught us to pray.

I think William Stillman may be on to something. These children may be teaching US.



Friday, September 10, 2010

Music Therapy – first appointment

T had his first music therapy appointment today! This is something I've been drawn to for him for years, and today it began. His therapist, Anne, let him explore during this first session. The room was filled with rhythm instruments, a few keyboards, bells and noisemakers. He went to the keyboard right away and found his "A" (an octave up from the lowest note on the piano). He always must find this particular note whenever he sees a piano anywhere and today was no exception. Anne observed and attempted to play what he was playing, but was playfully rebuffed: "No sing", "Green sing", or my favorite new one: "Stop it." There was never an angry moment – insistent perhaps, but never angry - which is good! He also played the bells (nine of them, all different colors, with a button on the top that you press like the "service please" bell you see in stores), the rainstick, maracas, rhythm "eggs", and a new favorite: the big drum.

I stayed in the room the whole time – 45 minutes!!! – so I could observe and translate (green is a negative adjective, "no-okay" means no, etc.) Both Anne and I tried to get T to sing, but he was a little on edge today – but again, he was in good spirits the whole time. We were hoping for a good 30 minutes – Anne said that many times, her new clients are looking longingly at the door after a few minutes, but not this little guy! He said "stay here" when given the option to go in the car or stay. So 45 minutes it was – and Anne was so pleased (as was I).

While the session went on, I realized my long term goal for him: to be able to share music. Right now, he is very territorial and protective of the music he makes. He can sing, but does not want others to join him. When he plays piano, no one is to try to play at the same time. Unexpected singing is very, very aversive. My theory is that he has such wonderful music going through his head continually that any other music disrupts it. This could also explain the aversion to phones ringing, inventory chimes going off in fitting rooms, electronically generated doorbell chimes, etc. (in addition to the auditory sensitivity). When I told Anne this goal, she smiled and said that it was a good goal, and if that is what he gets out of music therapy, then what a gift it will be. Agreed! Next appointment in two weeks. Can't wait!

Monday, August 30, 2010

Be Gentle with Phone

So to compare and contrast with church yesterday, we had to deal with phones ringing today. This has been an issue for several months now. T does not like the sound of the phone ringing, to say the least. It has moved from simply covering his ears and inhaling quickly when the phone (cell or land line) rings, to crying and stressing only when we answered it, to tonight's new wrinkle: going into full OCD scripting of "Be gentle with phone" even when we don't answer. Rob & I tried several approaches to distract, redirect, ignore, even attempted to acknowledge and validate that the phone hurts his ears and surprises him, to no avail. For a full 45 minutes, we heard "be gentle with phone" over and over, with him doing everything from pacing to looking us directly in the eye – nothing would stop it. And we didn't even answer the phone this time.

I'm tired today. I'm fighting a head cold valiantly, and didn't get enough sleep last night because AMC insists on broadcasting Mad Men at 10pm Sunday nights. (Okay, I could DVR is and watch the next day, but I don't.) When I'm tired I don't have the mental stamina to stay calm, and about 35 minutes in, started losing it. It is at these times especially that I am so thankful that Rob & I are doing this together. I don't know how a single parent would do it. When I'm about gone, Rob can step in and share a really sweet moment with him. T was still insisting that we "be gentle with phone", but sat in Daddy's lap and buried his head while he cried a little. It broke my heart and warmed it all at the same time.

Eventually it was time for his shower, and the change of scenery – and my last ditch attempt to distract by reciting Dr. Seuss' ABC – snapped him out of it. And just like that, I had my happy boy back.

I really don't know what we could have done differently, if anything. Off to write a note to his behavior consultant – another reason why we're sticking with ABA full time (you know: Applied Behavior

And even more reason to be in awe of what happens with him in church on Sundays.

Sunday, August 29, 2010

Church music

T is going through a phase where any unexpected music is aversive. I had no idea just how often music pops up in our daily life until this phase, so it gets challenging. Just try listening to All Things Considered, Morning Edition, Prairie Home Companion (can you tell I'm an NPR geek?), or watch any recent news broadcast about the 5th anniversary of Hurricane Katrina – there's always jazz in the background – or even this morning on CBS Sunday morning when they did a segment on a real show choir (ala "Glee")…all of these situations are met with a demand of "no music!", "no no music", and "be gentle with music!". The request/demand does not stop until it is met. What's odd is that he really does love listening to music – but it really has to be on his terms.

Except at church. Once we step into the sanctuary, he actually requests "Music", and will get quite insistent if there isn't any. He sits and listens to the organ play the prelude, watches the choir sing, sits and listens along during the hymns, much of the time smiling and happy. We might even get a joyful vocalization during an instrumental piece, as we did today during a piano duet during the Offertory. And while we frequently will need to ask him to use a quiet voice during the evening news broadcast so we can hear it, during church he is relatively quiet – and will lower his voice when reminded. Much of the pretty intense stimming (swinging his legs, flipping fingers, scripting) eases during the service, and there are moments that he sits quietly, looking at his surroundings. I know he's hearing the words and taking in the teachings.

While he sat quietly during the service today, I spent much of the time in absolute wonder of this child. I believe he is connected with God in a deep way that I am only beginning to understand. In fact, I'm beginning to believe that these children, these quiet, gentle & sensitive children, "get it" much more than we ever do.

Monday, August 23, 2010

Full time ABA:VB

The decision has been made: T will attend the Verbal Behavior clinic full time and no longer go to the public schools for a 2 half-days a week. It feels good to be on the other side of this decision, honestly. It was a tough one because we didn't make it due to any displeasure with the schools. It simply didn't make sense anymore to split his time. And honestly, how ridiculously blessed are we in comparison with other families in the country? We have a CHOICE between a TEACCH classroom and full-time ABA therapy paid for by insurance. That's just stupid lucky.

The fabulous SLP and his classroom teacher were both supportive of our decision. Clearly they weren't pleased, but neither were they upset or defensive. In fact, the SLP said that she couldn't argue with anything I was saying, and his teacher said that he is one lucky little kid to have parents who even know such options are available. As much as I currently doubt whether he will ever be in the public schools full time, I do not want to burn that bridge. So far, it appears that I have not.

So this opens up time and energy for other opportunities. Which brings me to the next remarkable event (coincidence?): While we were pondering all these things in our hearts, T's new OT gave me the business card of a music therapist that consulted with her on a mutual client. OT mentioned T to Music Therapist, she's intrigued, and I have the opening I've looked for. I've been drawn to exploring music therapy for T for months, perhaps years…but could we afford it? Health insurance surely would not cover this in addition to ABA, and we are 4.5 years into a 12 year wait for waiver services (waivers can cover music therapy.) But, I thought, nothing to lose by meeting her and discussing financing options/realities. Fast forward to last Friday: I gird my loins for the bad news, fully expecting at least $150/hour. I'm told they bill $11/15 minutes. Eleven dollars every fifteen minutes. Forty-four dollars an hour. AND…there is time in her schedule on Friday afternoons: the very time that T had been in the public schools.

I think this is a very, very good sign. His first appointment is September 10th. Onward and forward we go, making it up as we go along, and feeling very, very blessed along the way.

Text from a song sung at our wedding: "We're neither pure nor wise nor good. We'll do the best we know. We'll build our house and chop our wood, and make our garden grow."

Friday, August 13, 2010

Kung Zhu pets

T was given a Kung Zhu pet for his birthday from a friend this year. This was at my suggestion, because I've seen Zhu Zhu pets in Hallmark stores and thought that it might be a fun toy visually for him. Of course, being out of the loop on hip & current toys, I had no idea that Kung Zhu pets (more geared toward boys) were even out there. So I spent a good part of last night online, watching demos and trying to figure out the whole accessory thing. The Kung Zhu pets, unlike the original Zhu Zhu pets, actually battle each other one they are pulled across a strip that programs them to fight. There is a fighting arena and everything – battle armor – the works. As I was watching this, a thought occurred to me: I don't think T even knows what fighting is.

That's okay with me.

I believe I shall get him the original Habitrail-like accessories. Why teach him violence?

These kids may be showing us the way.

Tuesday, August 10, 2010

Decisions about school

The public school year starts tomorrow. Despite the IEP that is all set to go, complete with the two half-days a week with him in the TEACCH classroom and with ABA therapist from his ABA clinic attending with him one of those days, I'm beginning to have doubts as to whether this is all worth it. We have worked hard to maintain a good working, respectful relationship with the public schools while he attends the ABA clinic full time, all in the hopes that he will eventually transition out to the public schools. This particular elementary school has a TEACCH classroom and the most wonderful, dedicated and imaginative SLP on staff…I didn't want to completely let go of all of that. We truly love this elementary school: the diversity, the staff, and the dedication to their special education classes & students make for a unique place where we were excited to send him, and we lobbied hard for us to continue this set-up for the fall. (The fall, which starts tomorrow, August 11 – how is that possible?)

Yesterday, completely unprompted, Rob expressed some concerns about continuing this. I had to admit that I've changed my mind about it too. So what's changed?

T turned 9 this summer. He remains a happy, healthy kid with very serious communication delays and challenges. Sensory issues and repetitive behaviors, so very typical for people with autism, abound. As of now, we have no evidence that he reads or that he is unable to share with us an ability to do math or other academic activities. This is not to say that he isn't intelligent; his intelligence is not measured by academic practices. He is blessed to have the opportunity to go to an ABA clinic full time, paid for by our health insurance. This is nothing short of a miracle for him and for us. They love him fiercely there. And each person that works with him is personally invested in him for the long haul. The PhD who runs the clinic and his consultant can be with him for years to come, tailoring his program specifically to meet the needs of his "beautiful brain" (as described by his neurologist). At what point do we say that the public schools may not be in his future? Or perhaps not in the near future for him?

If this clinic were not available to us, the elementary school would be a good place for him. He would learn skills, get to work with the fabulous SLP there, have some interaction with typical peers – it would be okay. As good as a public school could get in the state, I imagine. Even so, it is not his home elementary school. The TEACCH classroom is the self-contained classroom which is housed in another school in our school district - so it's not like he's getting to know the neighborhood kids. And even with all the work that's been done, he needs direct 1:1 instruction (or very small groups) to learn. He does not learn in a classroom setting.

My heart is heavy because I understand the inclusion movement. I think it is vital and tremendous, and simply the right thing to do…for the kids that can handle it. T could "handle" it, but is it best for him?

What is there not to like about the clinic? He works 1:1 with one therapist in the morning, has 2 hours of small group and play time, then the whole afternoon he's 1:1 again with a different therapist. His therapists are fun, energetic, engaging, and totally dedicated to his progress. He gets hugs, tickles, smiles, and gets plenty of breaks to go to the motor room for sensory fun. He works HARD for 7 hours a day. The rate with which he learns new skills & tasks puts a year's IEP goals to shame.

I must acknowledge that I am loathe to make changes for him. It is easier to continue with the routine that we've established. And there is some comfort – and it doesn't take much courage – not to decide and keep my fingers in both pots. I don't want to let go of the public schools, but if I am honest, I'm not sure that 2 half days are really benefitting him. It's just keeping a dream alive that maybe I need to release. I've dreamed new dreams - and have released the typical ones that most parents get to keep without much thought. I don't know what his future holds and I can't control it. I learned long ago that the best way to take care of his future was to do what he needs today & tomorrow, and perhaps even next week. The ABA center has done brilliant things for him. The school would be fine. But I have in my power the ability to get him the Cadillac of care. Stay tuned. We may pull him from the public school completely in the next few days…for now.

Thursday, July 15, 2010

Expressive language

T likes the water. And when I say he likes it, I mean he really, really likes it. In fact, I can't leave him for too long unsupervised while he sits on the toilet, or he'll play in the water. So it should come as no surprise that he enjoys his nighttime routine which still includes a bathing time. A few months ago, after a visit to my parents' home where they only have a shower, T started requesting a shower at night - and he's never gone back to a bath.

The reason I titled this post "Expressive language" is this: tonight, around 7:15pm (about 45 minutes early), he said spontaneously, "Shower time." And off he trotted to the bathroom.

I just love those clear moments!

Wednesday, May 19, 2010

Annual Case Review 2010

Today was T's ACR (Annual Case Review) at his elementary school, where his IEP (Individualized Education Plan) is updated for the next year. Law requires that it be updated at a minimum of once every 365 days. These Case Conferences can be harrowing experiences - for all involved. Parents & school districts can get into some very heated debates about what a "Free and Appropriate Education" looks like. Believe me, I hear about it at work every day.

Rob & I have always gone out of our way to collaborate with the schools. I suppose this is helped along by 1) my need to please others and be liked, 2) my diplomacy, and 3) both Rob's & my mother having taught in the public schools. We've grown up hearing the school's point of view, and I even did a short stint myself in the public schools, having student taught during my senior year in college. So we've approached school professionals as such: professionals, not adversaries. In our early days, when our Case Conferences actually happened in our kitchen, I baked cookies or banana bread, had coffee ready, and we all mapped out an IEP for T together. While I haven't provided a baked good in a while, we still take this approach: respect, collaborate, listen. I don't know if we've been lucky, but with only one glaring exception, we have always had an excellent working relationship with the schools, and have managed to get what we want for our boy.

(The glaring exception being the nightmare speech therapy situation in Small College Town where T didn't get speech therapy for 4 months solid - LONG story there. Another post, another day.)

I don't expect the schools to provide the Cadillac education for him. That is up to Rob & me to assemble for him, and the schools are part of the package.

Long story short: we continue to have an ABA therapist from his therapy clinic with T during one of the 1/2 days he attends. Public schools in general have a very strong bias against ABA, and most of the time it is best NOT to even mention ABA during a Case Conference (even though the movement of using Positive Behavior Supports basically is ABA - but we won't mention that). I was prepared to have to go to bat to keep this in place for him, but not a word was mentioned, nothing challenged - just keeping the same services he has this year, only adding some more directed social interaction opportunities with typical peers during recess and lunch.

I thanked all the staff for working so nicely with us, ironing out this unique situation we've put together for T. We were thanked for being so good to work with.

It feels really good. It really doesn't have to be a big battle. Perhaps the fact that T doesn't have majorly disruptive behavior problems helps - I'm sure it does - plus he's so darn cute and smiley that everyone that works with him adores him...that has to help as well!

After all the drama at his former ABA clinic last summer & fall, and all the ugly behavior and manipulation & secrecy, this was a most welcome meeting. Look out 3rd grade, here we come.

Monday, May 17, 2010

I love you, Mommy

He said it! HE SAID IT!

Okay. Yes, it was prompted. But everything he can do has started off with prompting, so I will consider this to be wonderful and miraculous.

This was a case of making lemonade out of lemons. It started when he started saying "I love you Duckett" about a week ago. Duckett was his beloved speech therapist - his first one from the public schools, and who is still the object of his adoration even though he's seen her once in three years. The one visit we had with her - just over a year ago - was memorable because of his reaction to seeing her. He walked into her office, saw her, shrieked with joy and then turned his back, covered his eyes and hid - almost as if to say "This is way too good, I can't stand it!", grinning and giggling the whole time. We took several pictures that day and they are saved on my computer's desktop so they are easily accessible. He asks to see them just about every night, and he nearly has the same reaction each time: it's too good! I must turn away and jump and hide! That's the background.

So about a week ago, he started saying "I love you, Duckett". Completely unprompted. My heart was bursting: with pride & excitement that he could put his feelings into words- unprompted, and breaking that those words weren't for me first. I resolved to remain celebratory about it, and rejoice that he, once again, has proven that the stereotype of individuals with autism not making emotional connections with others is not true - at least for him. He loves and he can say that he does. And that is huge.

I could have felt sorry for myself - and I did for a few moments. But I decided to grab the opportunity, and after a few days said to him: "I love you, T" in my clear, vocal prompting voice. And he said "I love you, Mommy" back to me.

We tested it on Daddy next. Rob: "I love you, T." And T replied: "I love you, Daddy."

8 years, 10 months. We'll take it!!!

Wednesday, May 05, 2010


This morning, I told T that we were going to the dentist after school, and promised him that Dr. B would be so impressed with him. For the last several months, T has allowed me to use those flosser pic deals to floss his teeth, and I said that Dr. B would be so proud of him for doing so! I said that we were going to show off his wonderful teeth. Little did I know how impressed Dr. B would be with our boy – and how impressed I would be as well! Not only did T allow the dentist to floss between most of his teeth, but he also (with some encouragement & cheering on) allowed him to use the polisher all through his mouth! He still does not want to have anything to do with the actual dentist chair, but he sat just fine in a regular chair, and this dentist is so kind and experienced with our kids that he knew not to push the dentist chair thing. Both he and his dental assistant acknowledged that he made great progress today.

To paraphrase our Vice President (whom I adore), this is a big *bleeping* deal. About two years ago, he would get agitated if I even moved my hand toward the electric toothbrush the dentist suggested we use, let alone touch it or bring it toward his mouth. After several months of work, his Verbal Behavior therapists had him using it comfortably. We've been using an electric toothbrush since then, and I'm sure that being used to the sensation of something vibrating like that made today go as smoothly as it did. Bless his heart, the minute the dentist was done with the cleaning, T looked at me and said "Car", but he tolerated the flossing & quick fluoride treatment as well.

Other moms have told me stories of having to do several thousand dollars' worth of dental work on their child with autism because they simply won't tolerate having their teeth brushed. That adds to the wonder of this day – and the wonderful-ness of this boy!

Such a good day! We went to a party supply store afterwards to pick up things for Rob's graduation party this weekend. I tried to find some small plastic slinkies for him to play with as a reward, but I couldn't find any. No problem: the store had large (like 3 feet wide) pedestal fans going in the store. That is nirvana for T – no better reward than getting to jump and play in front of a huge fan! He earned it.

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.

Wednesday, February 03, 2010

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!

Saturday, January 09, 2010


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?