Wednesday, October 31, 2007

Full time VBCA

We did it - today we told his teacher at the public school kindergarten that we had this opportunity we couldn't turn down. Full time at the Verbal Behavior Center PAID FOR by insurance. She was sad to hear that she would lose T - she always says that she wishes she could clone him - but she completely understood and supported us in our decision.

I told her that it was my intention that he'd be back, and better than ever in being able to follow directions, understand language and use language. She was glad to hear it, and said there would always be a place for him there.

Both Rob & I were heartbroken over making this decision because this is a fabulous school - a dream situation - and part of us wonders if we made the right decision. But this is an incredible opportunity for T which so many parents would give anything to have. So many parents go through due process with their public schools to get ABA or VB in the classrooms - most of the time to no avail - and we have it for a mere $20 co-pay a day.

I'm also bearing in mind that if it isn't a good fit for T, we can always switch him back to 1/2 time. Doing what's best for him...doing what's best for him...not what I would choose...doing what's best for him...

A Happy Halloween

I believe we have found a happy way to spend our Halloweens! We did not trick or treat this year. (Last year we did, and it was fun for a few houses, but became very confusing for T. He didn't get that you ring the doorbell and DON'T go in the house. Plus he's on this pain-in-the-bleep diet, so he couldn't eat the candy anyway.)

This year, we put him in his costume - surgical scrubs - and he hung out with us on the front porch while we handed out candy. He had a great time! He was really happy, galloping up & down our driveway when other trick or treaters came to the house.

I did take him to visit two of our neighbors, just to say hello. They were happy to see us, and it reinforced for me that we made the correct decision not to take him house to house. He bee-lined from room to room, going wherever he wanted while I tried to keep up with him. It is so hard to take him to a new house! But the neighbors were glad to see us, didn't seem to mind the investigative tornado that T is (absolutely no damage done), and we all had a good time.

I must add that I saw the most hilarious costume ever tonight. A girl was dressed up in an inflatable sumo wrestler costume! It actually had a little fan in it to keep it inflated, like one of those big lawn ornaments you see at Christmastime. Imagine the size of Violet Beauregard from Willie Wonka and the Chocolate Factory movie (Gene Wilder version) blown up like a blueberry. It was awesome!

Tuesday, October 30, 2007


Today, a first.

T has been able to identify me in pictures for several months, and recently has also been able to look in my direction when asked “where is Mama?” He does not call me by name, nor does he call out for me when hurt or sick. He does say “Night-night, Mama” every night at bedtime, almost always prompted.

Some more information that will make this story more meaningful: his VB therapist and I worked for 6 months (no exaggeration – December ’06 through May ‘07) to get him to “point to the refrigerator.” Pointing is not something T did until a few months ago. It is still rare, with the one exception being when he points to pictures on the table in front of him when asked “where is the…”

So this is why today was so cool.

We were at his OT session, T riding a therapy bike around the hallway circuit with me dutifully following behind him and the therapist (the Small World therapist from a few posts ago). She asked him “Where is Mom?”, and after getting his attention and asking again, he glanced back in my direction. I was pleased with this. After several more minutes of riding, she asked again: “Where is Mom?” He stopped pedaling, turned around from the waist, looked at me, POINTED, and SAID “Mom.”

I was blown away. He had never done that before. The therapist didn’t realize what a monumental moment that was for him and me – until she saw my reaction. Such an everyday thing for so many parents…such a miracle for me. Dare I say: a God Moment.

Screening every child

So, the American Academy of Pediatrics is now recommending that every child be screened twice for autism by the age of two. Rob & I watched this news story very closely last night, and I had some very mixed reactions. Relief that they are finally making sure pediatricians know the warning signs and check for them. Sadness that it has come to this: so many children are affected by this disorder now that it has to be part of the routine Well Baby checklist. Satisfaction that our pediatrician saw the warning signs and got us into our state’s early intervention program so quickly – by 15 months. Frustration that we were part of a huge pediatric practice in the previous city where T was born – their modus operandi was to have the baby see a new doc for each Well Baby visit - was something missed that first year because we were part of a meat grinder medical practice? And continued fear and worry over the increase in diagnoses. What the hell is going on here?

I listened to the list of early warning signs, and thought back to T’s first two years. He never did catch on to patty-cake, nor did he point to anything. He did babble, and although he might have been on the slow side of meeting milestones, he met them all. That is, until language acquisition came along – or in his case, didn’t come along. He also had his Ride ‘Em Cowboy crawl (or as Rob & I referred to it far from earshot: the Half-Ass crawl) where he scooted across the floor on one buttcheek with one hand on the floor and the other up in the air like he was riding a bucking bronco. Very resourceful, our child. So we had some warning signs, but nothing that we thought of as too scary. Although, I admit that somewhere along the way late that first year, I stopped looking at the checklists in the “What to Expect the First Year” book – he wasn’t meeting them all, and it was very unsettling. We just thought he was taking his time. He was a happy little guy, extremely easygoing, and we took pride in the fact that we could leave him in the church nursery or with a babysitter and he wouldn’t make a thing over it. No crying, no separation anxiety – what a well-adjusted baby boy.

Little did we know that the last thing I mentioned was a huge red flag. He didn’t really care if we were there or not. He knew us and smiled and was a happy guy, but it wasn’t necessarily a good thing that he didn’t get nervous when mommy left. We also didn’t know that a friend who has an older child with special needs noticed – at 4 months – that T wasn’t making eye contact the way a typical baby should. She said nothing, but knew something was up. After the diagnosis, we heard of her observation. Although many have asked if we were angry that she didn’t say anything, my response is that I’m glad she didn’t. We had a full year free from worry – one beautiful, carefree year – and I am so thankful for that. We wouldn’t have believed that anything was wrong anyway.

As we began the Early Interventions for his developmental delay, I watched each therapy session intently and did all the assigned homework with him between each session. We had therapists coming to the house 5 times/week. I admit that although I saw the delays, I was mentally just humoring them - playing the game and going along for the ride – surely these things would resolve themselves by the time he went to school, or even by the age of 5 or 6. I went into a crying, frantic rage when his first SLP suggested that we plan to take him to the big city children’s hospital for testing for autism – this was at about 18 months. No way was he autistic – she was so quick to diagnose, and how dare she suggest that??? I even called one of his other therapists, told her what the SLP had said, and asked her what she thought. I was so relieved to hear her say that it was way too early to say anything, and that she wished the SLP hadn’t said anything so soon. If I look back on any conversation with regret, it is that one. Maybe it was too soon to say anything definitively – and at the time, I was so relieved. But she must have suspected autism, and didn’t say anything. This is the conundrum we faced: some docs were saying you can diagnose at 18 months – yet some said you couldn’t get a definitive diagnosis until 3 or 4. Even when we said that we didn’t want to rush a diagnosis, no one pressed us on it. I kinda wish someone had. We even had a pediatric neurologist examine him not long after that, when we thought he had a seizure, and she told us that he was way too social to be autistic. But dammit, that’s what he was, and what did these kind souls do by not telling us the truth? I guess we’ll never know. Maybe – probably – we wouldn’t have done anything differently.

I try not to dwell on the unfairness of all this. We were first time parents, and didn’t recognize the red flags even though they were flying in our faces. If we had had a typical child first, I’m sure we would have caught on much earlier. But we didn’t, and I can’t “what if” or “if only” myself too much.

So even though I watched the news report with mixed emotions, I think it is high time that all children are screened for autism. Now if the AAP would take away egos and financial concerns from the debates about causes, we might get somewhere.

Saturday, October 20, 2007

Private & public schools

A decision we we have looming will be about whether to keep T is his current school situation. We are not displeased by any means - he receives 3 hours of Verbal Behavior every morning and then goes to the public school special ed Kindergarten in the afternoon. We thought that this would be a good mix of highly specialized, intense therapy which is highly effective for these kiddos and a more natural, real-life setting of a public school classroom - good for socialization and generalization of skills.

We love this elementary school and the classroom. This is the classroom that we toured back in April and literally CRIED tears of joy over when we saw everything this room had to offer. I wished that the schools in our previous town could have seen this classroom. We also love the mix of kids at this school: 30% caucasian, 30% black/African-American, 30% hispanic, and the rest other international. AWESOME. This is the atmosphere we want for him.

We also know that this verbal behavior program is working for him. We are also in the unbelievable situation of having this therapy COVERED BY INSURANCE. We pay $20 copay each day, but that yearly total, after meeting the out-of-network provider limit with our health insurance, is nowhere near the $60,000/year it would cost. Yes, $60,000/year. Twice that of the most expensive yearly private colleges' tuition in this country, mind you.

So we are thinking of moving him to full time VB. It would be awesome for him. The center through which he receives treatment is moving to a big, new building in a few weeks, and part of his day would include opportunities to interact with other kids at the center. So he'd get the socialization bit. And he missed so much speech last year, and really got the short end of the stick with the whole school situation in our previous town that we're thinking that this would help make up for that.

But I walk through the hallways of the elementary school and my heart breaks thinking about taking him away from that.

But this isn't about me. And I can't exactly ask what T wants. So we need to do what's best for him. Ultimately, what is that?

9 month DAN app't

The timing of this appointment couldn't have been better. A few days after receiving the new OAT test results, we were sitting in our DAN doc's office - all of us scratching our heads. Thankfully, we have many more things to try before we give up. Don't get me wrong - part of me would really like to give up - but knowing that there IS yeast & bacteria overgrowth keeps me moving forward with this. She (the doc) was frustrated with us (and for us) that he didn't seem to be responding to the treatments the way most kiddos do - but it also wasn't the first time she had seen it.

It wasn't just the diet he didn't respond to - we also didn't see any change when we started him on the mega doses of vitamin B6. Not every kid does. But that is a clue that points toward his methylation process not working properly (and I won't bore you with that), so she feels strongly that the Methyl B12 shots should be tried with him soon. I agree.

In the meantime, we are doing several mini-trials of taking out vitamins/supplements to see if it helps with the stools. So far, Super Nu-Thera (the vit B6) has been out for a few days with no known negative effects.

One really cool thing: he's no longer grinding his teeth. He used to do it all the time, and very loudly. It made people cringe it was so loud! When we began all this back in January, our doc said that teeth grinding was usually caused by yeast overgrowth or zinc deficiency. Rob has been diligently rubbing zinc cream on T every night for several months. So since there is no change in the yeast, it points to zinc levels being better. This was further supported when we told her later in the appointment that he's refusing his juice w/ Super Nu-Thera, and she said that his taste sense is getting better - and that is usually due to better levels of zinc! Geez.

We weren't kidding when we joked that this is one big chemistry experiment.

We're also going to introduce back into his diet some of the foods he reacted to in the IgG test (food sensitivity.) So almonds, peanuts and rice will be the first items slowly rotated in. More intense scrutiny of the poops to come for me - and behaviors, too.

Friday, October 12, 2007


Yeah, I was pretty pissed with God a few days ago. I didn't blame God for the test results - that wasn't it. I just really wondered where the hell God is during times like this. I have so many conflicting opinions myself in response to that question that I really don't know what I truly believe, if pressed to give a quick answer.

After the tears and anger subsided and I lay in bed trying to go to sleep, I found myself on Tuesday night saying to God "Just tell me what to do. Just tell me what to do. Just tell me what to do." I don't think I got an answer, but I did fall asleep and felt much more positive in the morning. I still don't know that I got a direct answer, but I had more energy to move forward.

And what's the alternative? Lie around, wallowing in self-pity and depression? Yeah, that will help T. And that's no way to live this life that I still believe is a gift.

When T was first diagnosed, many friends told us that God had chosen us for this beautiful child because we are wonderful parents and could handle it. That God has some purpose in this diagnosis that we don't understand now, but will be made known. There are times that I do believe this. I think this idea has some merit, and is, in an odd way, comforting when facing real challenges. Much of the time though, I think "If that's true, then kiss this autistic mommy's ass, God. Why would you do this purposefully not only to my beautiful son, but hundreds of thousands??? What kind of loving God does that shit?"

So, that theology doesn't always work for me. Most of the time, I believe that God is right here along side me, worried, scared, angry, and desperate for hope. God is also in my son's laugh and smile, and in those fleeting moments when I get perfect eye contact and interaction. Sometimes, there is God. God is also hoping for help, for improvement, for solutions.

There was one spooky time too, that may sound like Anne Lamott's transforming experience. I was at my wit's end with T - this was a while back - and I was at the end of my very long fuse and was about to lash out at T to get him to stop screaming. I knew I just couldn't do it to him, but I was beside myself with frustration and anger. So I imagined Jesus - yes, I mean Jesus - sitting there in the kitchen with me. He wasn't in his white glowing robes with the halo around his head - he was comfortably attired and sitting at my kitchen table. He didn't say anything, but looked at me, understanding. His calming presence spoke volumes. Needless to say, T didn't feel my wrath that day, nor has he ever.

And yes, through these tough times, beautiful people who are true blessings have come into our lives that never would have otherwise. Beautiful things happen - not only despite his autism, but because of it.

I also acknowledge that while we face huge challenges, no one is going to die over this. Our home hasn't been blown away by a tornado or hurricane. We have a loving and incredibly supportive family. We have more than enough food to eat. I do manage to keep things in perspective about 98% of the time.

So, I will still believe in God, and will still be in a relationship with God. I may get pretty angry with Him (sorry, still liking the image of God as man), but I figure even the psalmists got pretty mad with Him and yelled and questioned, so darn it, I can too. I think God can take it. He better.

Doctor's reaction to OAT results

So I spoke with our DAN! doc. She's overworked - the only DAN doc in the area - but God bless her (yes, God & I are on speaking terms again) she spent 40 minutes on the phone with me Wednesday afternoon.

At first, she wanted to agressively go (sorry for the split infinitive, Mom) after the yeast & bacteria with more prescription meds. I said "Um, no." This diet doesn't seem to be helping, and I don't want to keep trying the meds that didn't work. So she told me one of her favorite quotes from Sid Baker (queue the angelic choirs singing), one of the founding docs of the DAN movement: The Child is the Best Lab. So we looked at the one biomedical treatment that has worked, and that is the goat yogurt. The stinkin', blessed goat yogurt. It is the one thing that has made his poops more formed, so we are keeping that. I'm going to introduce slowly some benign foods back into his diet. Rice is first. We're going to keep the massive doses of probiotics and a natural antifungal going (Saccromyces Boulardi, for those of you in the know), and monitor him for a few weeks. In other words, completely natural interventions.

My sister, a brand-shiny-new DAN doc, will come for a visit in mid-November. At that point, she'll help us administer his first Methyl b-12 injection. This is a treatment that has had really remarkable results with some kiddos, so it is definately worth a try. My sister has already ordered some for herself (the shots are totally harmless) and she'll do them on herself for awhile. Then, if all goes as planned, she will give me the shot and Rob the shot too with T watching. It's a small, thin needle, and I'm told that it really does not hurt. Some parents give the shots to their child when sleeping, but Rob & I don't want to take the chance of him waking up and being scared.

So that's where we are. I can't give up on this yet.

This has been tough on us all - I feel like I have nothing left that is interesting about me, except that I have a son who is autistic. I have no interest in pursuing voice students, going to a new church, making new friends, all because it is all so much damn hard work, and I'm so weary of hard work that I just want to do withdraw. But I will do all these things eventually, because damnit, I am a positive person and I do think there is hope. I'm just tired. Really, really tired.

This has also been hard on Rob as well - watching me disintegrate into tears and frustration over all this, and nearly losing my mind. He would like to quit it all because he sees how hard it is on me AND he sees that it isn't having the results that we hoped for. I completely understand. He's sticking with me, but I see how hard it is for him to do so. I feel so very blessed to have him by my side through all this - I hear the statistics of percentages of marriages that end in divorce that have an autistic child (80% and I'm not kidding) - and I count myself lucky that we are not headed in that direction.

Tuesday, October 09, 2007

New OAT test results

This sucks.

After seven months of the Specific Carbohydrate Diet, 2 rounds of vancomycin (antibacterial), 2 rounds of Diflucan & endless Nystatin (antifungals/yeast meds), Thomas still has bacteria & yeast overgrowth. Not only that, the numbers are higher. Worse, in other words.

This isn't working.

And I've spent so much time, money, energy...god damn it.

Speaking of God...well, shit. I don't want to. I don't think I'm on speaking terms right now.

I'm going to bed. Another morning of swollen eyelids from crying myself to sleep. Fucking hell.