Sunday, December 16, 2007
Results so far: he is happier than he's been all year. More real interactions, wanting to play, understanding and maneuvering situations better...it's all very exciting. Now for the poop talk: it is as normal as I've seen it in months. Gross to talk about, I know, but this is one tangible way to measure progress for him. At least I'm not inserting pictures.
I think we're on the right track! Welcome back, rice. Next is cheese, potato, then...GLUTEN. Fingers crossed.
Friday, December 14, 2007
Today we went to our local zoo to see the big display of model trains. What a great time! And it was no surprise at all to spot at least one other autistic boy there. Something about trains and these kiddos really connects. I took him today because Fridays are half days at the Center (VB school), and I hoped that since most other kids would be in school, there wouldn't be a big crowd. I was right – it was perfect! Just a few other kids & T had the big space to themselves, and T was able to jump and flap his hands and make very happy noises as much as he wanted – especially since another boy was there doing the same thing. He especially liked the trains that moved quickly and were on tracks close by.
What pleased me so much was that although we did stay in certain areas for long, long periods of time, he did eventually move around the whole space, even upstairs, and got to see the whole exhibit. He got distracted for a few minutes by the enormous fans (this display was set up in a huge greenhouse), but I was able eventually to move him away from them without a scream or a lying-down fit.
This was a very successful venture out into the world today. I feel so very blessed that we have a kid that can maneuver these situations with reasonable success. So many fellow parents don't even try anymore – they just know their boy won't be able to handle the crowds, the change of routine, the noise, the stimulation, etc. Yes, we have had our share of struggles, and even a few disasters, but they have not stopped us from trying. And I figure that if we never take him to these places, he'll never have the opportunity to learn how to handle them.
The grandmother of the other boy & I almost immediately started chatting. She was watching T, and I had spotted her grandson. We smiled at each other, and when I approached, said "I think our boys could stay here ALL DAY." She replied, "Yes, I think you understand. I was watching your boy. Once you have one, you can spot 'em a mile away!" It was so cute, and honest.
Her boy was 8, and I couldn't help looking forward two years and thinking about T being that big. Do they have to grow up? Can't he just stay little and cute? I won't be able to pick him up when he's that big. And God, I hope he's potty trained by then!
Okay, stay in the moment. It was an awesome afternoon. Let's hear it for model trains.
This is from the Talk About Curing Autism website:” At the Defeat Autism Now (DAN!) 2004 conference, methyl-B12 was awarded “most recommended medical treatment” for autism spectrum disorders by the attending DAN doctors for the year.”
A refresher: DAN docs look at how kids with autism are bio-chemically different from typical kids. Then they prescribe treatments to treat the differences. Many times, kids are helped by these attempts to normalize their systems. Some – very few – are considered “recovered.”
I won’t go into all the science behind all this except to say these few things to you as I understand it: the methylation process is part of the body’s detoxifying process. The methylation process appears to be interrupted in these kids, as well as the detoxifying process. Methylated B-12 can get right to work - their bodies don’t have to do anything to use it. If you’d like to know more, this is the best article I’ve found to describe it: http://www.talkaboutcuringautism.org/medical/methyl-b12-treatments.htm
Today marks five weeks since we started. I am pleased to report (drum roll, please) that this intervention, along with zinc cream and Verbal Behavior, WORKS for T. Just about everything else we’ve tried in the biomedical/DAN! World has had little or no effect. But this…ahh (happy sigh) seems to be having some positive effects. It’s not a miracle or a cure, but darn it, he is talking more: requests, refusals (especially refusals!) and filling in the blanks. He’s more inquisitive and just seems to be more aware of his surroundings and himself. His OT said (umprompted) that he’s talking more, seeking out more vestibular feedback and is more willing to try something new in the therapy gym. Almost every day surprises us with something. A few days ago, T was in the basement when Rob told him it was time for his shot. T got up, walked up the stairs, walked to the refrigerator (where we keep the pre-filled syringes), opened the door, pointed up to the bag of syringes and said “Shot.” Great Scott! A year ago, the mere task of pointing to the refrigerator was in his Verbal Behavior program for 5 months. (Literally – we introduced it 12/8/06 and it didn’t move into maintenance until May ‘07.)
So we’ll continue this treatment. It’s amazing to write those words, because we were so close to giving up on all of this a few weeks ago. We still plan to reintroduce foods to his diet, because all the dietary stuff just seemed to make things worse for him. Rice came back today. I think it’s fair to say that he’ll have some Christmas cookies this year after all. In with methyl B-12, out with SCD!
Sunday, November 25, 2007
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.
Saturday, November 17, 2007
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.
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
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
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!
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!
Wednesday, October 31, 2007
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...
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
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.
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
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?
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
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.
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
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.
Thursday, September 27, 2007
Saturday, September 22, 2007
So he was pretty groggy when I first went in. He hummed a little bit of a tune, which I recognized as the song I sing to him at night. He LOVES this song. So, I croaked out the song to him in my still groggy state. When I was done, he looked at me and said "I love you."
He wasn't singing it. I sing a song to him that starts off "I love you Lord Jesus, look down from the sky...", which he also loves. But he wasn't singing this time. I say "I love you" to him almost every night before he goes to bed, but he's never echoed it. He may have actually told me that he loves me this morning.
He may have actually told me that he loves me.
Thursday, September 20, 2007
Okay. So the good news is that the goat yogurt does indeed seem to help T have normal, formed BMs for the first time in MONTHS. This is an incredible thing for him and for me – having to change soupy poopy Pull-Ups that smell terrible and get all over T and me and stink up the house & garage and give him diaper rash has been a 9 month nightmare. Every time I change a Pull Up that is full of diarrhea or soft-serve poop, I feel just awful that we’re subjecting him to this discomfort with this diet. This was supposed to heal an inflammed gut, but is it? Honestly, Rob & I are so ready to give up on this particular diet. But the goat yogurt firms up those stools, and plop, they drop right into the toilet without leaving much trace on the Pull Up. Hard to believe I’m writing this, but I’ve never seen such gorgeous poops as when he eats the goat yogurt.
Bad news. One time, only once, I added homemade raspberry jam to the creamy, smooth yogurt. Texture change. Seeds. Yucky. He took one bite, and it was over. Okay, so I threw that dish out and made a fresh serving with lovely, smooth strawberry jam. Too late. He would have nothing to do with it. Of course, I’m frantic to get him to eat it, so I’m insisting – being pleasant & upbeat – but not letting down because DAMMIT, the stuff give him gorgeous poops and I’ll do anything to keep that up. Nope. This goes on for a few days, with me nearly exploding with desperation to get him to eat, and him flatly refusing – keeping his lips tightly closed, turning his head away – then the showdown ensues. Now he won’t even have it on the table near him without screaming “NO YOGURT! NO BITE! NO NO!”
I want to cry & give up.
Sidebar: a year ago, he would not have been able to verbalize his intentions this clearly. Amazing. Diet? Verbal Behavior? Just normal development with aging?
So, plan B. I hide a mere ¼ tsp of yogurt in his walnut butter morning & night. He doesn’t seem to mind the taste, and remarkably, a grand total of ½ tsp each day does appear to be maintaining better poop consistency. Not gorgeous, but better.
I’m also putting the yogurt with the strawberry jam on the table next to his plate at breakfast & dinner. No expectations – just accept its presence on the table. So far, so good. Next step: have him just touch the spoon without melting down. Then pick up spoon. Put to lips. This will take some time. A month, perhaps, as our VB consultant predicted today.
And all the while, Rob & I are still poised & ready to give up on this dietary intervention and try something else. I get myself into such a “Can’t give up” hole, and Rob keeps me grounded by looking at all this as a researcher, which is what he is, after all.
The plot thickens. More when there is something to report.
FYI: OT can stand for Occupational Therapy or Occupational Therapist.
I took T to a local large rehabilitation/therapy clinic in our new city today for an OT evaluation. This is the first step in getting him set up with weekly OT sessions. OT is an important part of the whole equation of therapies for him; his OT will help him with his auditory processing challenges (eventually getting back on track with Theraputic Listening – see earlier blog post), sensory issues, motor skills (like writing ) and with basic/everyday skills like buttoning, snapping, brushing his teeth, etc.
I was really pleased with the OT we met today. The SLP (Speech & Language Pathologist) from his new elementary school recommended this particular therapist because they had worked together at this large clinic before she took the elementary school job. Anyway, the OT and I seemed to click, mostly because she demonstrated to me that she was an old pro with autistic kiddos. She wanted to know more about his diet and the other biomedical interventions we were doing, and knew enough to ask “Is he alternating between Nystatin & Diflucan?” Wow. She knew about the Specific Carbohydrate Diet. She’s worked with kids who have done the SonRise program, Floortime, and the PLAY project, as well as Verbal Behavior. She likes them all, and uses different techniques from each in her approach. What a relief, truly. I felt like she knew at least as much about autism specifically as I did and we were already speaking the same language. Can you hear me exhaling? Whew.
So then we started talking about the town that we moved from, and she said her sister had lived there – and worked at the university. “Oh?” I said. “What department?” “Higher Ed”, she said, and I about flipped. “My husband is ABD in Higher Ed there. Who is your sister???” Well, when I heard the response, I dropped my jaw and said “Um, yeah – I know her. Rob knows her, and she was one of my Pampered Chef customers when I was a consultant a few years ago!!!”
What are the chances of that? All together now: “It’s a small world after all, it’s a small world after all, it’s a small world after all, it’s a small, small world.”
Saturday, September 08, 2007
Goat's milk yogurt next, and yes, it is still homemade. Firmented (aka cooked) for 24 hours to get lots of good bacteria going. That is the whole point of this: get good bacteria in the digestive system, replenishing what he doesn't have, to help with absorption of nutrients from the food he eats.
The first attempts at making yogurt, especially the very first time, were so nerve-racking that I nearly had a nervous breakdown. Heat the milk, but ONLY to 180-185 degrees and if it goes over then you've KILLED it. Oh, by the way, the milk should be raw milk. (That's super easy to find - NOT. We'd need to buy a share of a goat from a farm nearby, and I ain't doin' that until I know it works for him.) Then let the milk, which has not gone above 185 degrees, cool to between 65 & 70. Then add non-dairy yogurt starter, cook at 105-110 degrees (again, don't go above 110 or you'll KILL it) for 24 hours. Yep, 24 hours. Thank God my mother gave me her yogurt maker so I don't have to come up with some twisted way of keeping this fragile stuff at the precise correct temp for that long. Refrigerate for 8 hours. Then (no, we're not done yet) I have to drain the stuff because it's so liquidy. That takes another 8 hours. By the time this process is done, it really is a gorgeous and tasty plain yogurt, but this is nuts.
I'm nuts too, but I'll do anything if it might help him.
We are on our second batch of goat yogurt, and the BMs are getting less and less, well, loose. He's actually starting to eat it on his own now too. Good sign. Stay tuned for continued updates.
Tuesday, August 21, 2007
We've been preparing him for this for a long time - ever since we noticed that the tooth was loose. We've been telling him what amounts to a "social story" - these are little stories that explain a social situation to a child who doesn't understand typical social situations. (We have social stories for going to the grocery, using the toilet, and we wrote one for our move, too.) It amounted to something like this:
Your tooth feels loose. This is okay. This is what your baby teeth will do. Your baby teeth are the ones you have in your mouth now. One by one, they will all get loose and fall out, and that is okay. New, big boy teeth will grow in where the baby tooth was, and they'll be your big boy teeth, just like Mommy's and Daddy's.
Ultimately, the best thing to do is print each sentence on a separate piece of paper and put a simple picture illustrating the sentence on that page. You create a book this way, and that becomes the social story.
So now the question is this: do we play up the tooth fairy deal, or would that be too confusing? I mean, people with autism take things quite literally, and telling him that there is a tooth fairy when there really isn't one is a tough call. We have the same issue with Santa. Well, what we've decided to do is tell the story about the tooth fairy and Santa, tell him that it is indeed a STORY so that there isn't some major trauma later about Mom & Dad telling him to believe something that isn't true. I guess this is an issue for most kids, but it seems particularly challenging when these kids are so literal in their understanding that it may be tough to separate fact from fiction.
Anyway, it's been a big day for our little guy...who is getting bigger all the time. I'm so proud of him!
The thing that just makes my heart ache is when he approaches me JUST as I am about to sit down to eat! He's done this to me at least twice now, and it just kills me to have to say "I'll come soon, but Mommy needs to eat now." I mean, each time it's been when I've been starving and working hard getting breakfast or dinner and am just really needing to sit down for a few minutes. At least tonight, he didn't have a meltdown when I said he needed to wait - he just layed down on the floor (sign of frustration and protest), kept asking me to go out, but was at least was not too anxious. The minute I was done with my last bite, he was up again, looked me in the eye again and said "trampoline." He had to have been watching my every bite!
Saturday, August 04, 2007
We had a lovely afternoon shopping at a local mall - new to us both, so there was lots to explore. He's usually "on edge" (as I describe it) in situations like this: pretty stable, but very active with lots of wandering, galloping, vocalizing & flapping of hands. I try not to test him or thwart him too much in these situations. We can have a very nice time if I follow his lead and gently direct him when necessary. I'm used to this and really, I don't even see other people staring anymore. Most of the time, people get that he's different and are really nice about it, and that is lovely. I've found this to be especially true in our new city.
So after about 2 hours of meandering - and he was great, stayed with me or at least nearby - we decided it was time for daddy to meet us at Fancy-ish Chain Restaurant. Rob packed his dinner at home (what a gem of a guy) and we were to get a table. In normal, everyday circumstances for typical folks, this is not a big deal. I just didn't think about the fact that we'd be sitting down at a restaurant table without his dinner immediately available.
We sat down, and T reached for the backpack. Immediately, I knew this could be cause for trouble. Nope, I don't have your dinner. Daddy is bringing it. So T gets agitated and leans further over to get backpack. I show him there is no dinner in there. Daddy is bringing it. Oh geez, he's escalating. T is surely thinking "We're at a restaurant, and when we do that, Mommy always has the blue lunchbox with my dinner...only this time, she doesn't! That's FRUSTRATING and I'm confused! Why won't she give me my food???" and the crying and screaming start. Nothing to do but take him out and let him scream it out outside of Fancy-ish Chain Restaurant. Thankfully, within about 2 minutes, Daddy saves the day by arriving. Hooray Daddy! So, with his face all splotchy from crying but with renewed calm, we go back into the restaurant - and all is perfect for the rest of the dinner. All is well because he now has his dinner in the appropriate manner.
Lesson for Mommy: don't go a-changing the restaurant routine! I got it.
Wednesday, August 01, 2007
As I spoke with her today and thanked her for being in our lives and for everything she had done for us, she weakly said "Now, don't you ever say goodbye to me - just say goodnight." I did - and added "Till we meet again", and promised to call again soon. When I was off the phone, I told T that I was just talking with Norma. He looked at me, smiled, and said "Night-night, Norma."
So, night-night, Norma. And if this is indeed your time, may you be in the arms of the angels.
Monday, July 30, 2007
Saturday, July 28, 2007
No birthday cake for him this year - just one of his muffins made with nut flour with a candle stuck in it! He smiled at the lit candle, and even tried to blow it out this year. Very cute. He sang a few lines from "Happy Birthday", but no one else was allowed to - it's still a touchy song for him - he still covers his ears and sometimes shrieks when other people sing it. So, we just said "Happy birthday" to him, and it was fine.
He is getting more and more comfortable in our new house all the time. This week he has discovered the pool table downstairs which came with the house. He loves rolling the balls in to the corner pockets and watching them roll down - very entertaining! He smiles and laughs and has a great time. Not every kid has a pool table in his playroom! I'm glad he's warming up to the basement - all his toys are down there, and that is where his Verbal Behavior home program will be set up until a space opens at the school.
Ah, Verbal Behavior! We've had to take a two-month hiatus from this wonderful therapy - due to the move and vacations, etc. - but we'll start back up in a week. I am eagerly anticipating the return of VB to his schedule - it's been so beneficial for him, and frankly, it will be nice to have a few hours that I'm not solely responsible for his entertainment and education. It's been driving me nuts this past month - unpacking, organizing, all the stuff that comes along with setting up a new house - all the while knowing that he is just sitting in the family room spinning his toy windmill or similar toy, idle, idle, idle...but what can I do? I know he's happier when actively engaged - and he's been very on-edge at times because he's bored and gotten into a zone where he's spent so much time in his own world that it's hard to break him out of it - but again, there's only so much I can do. I keep telling myself that this month won't kill him...it may set him back from where he could have been, but again, no one could do VB this month, period. And I certainly couldn't keep up with it with everything else I've been doing, and I keep telling myself that it's summer vacation for him, for crying out loud. The pressure I feel...the pressure I put on myself...my biggest struggle.
So, T starts VB 1/2 day through a private school in a week, and kindergarten the other 1/2 day in the public schools the following week! Hooray.
And Rob & I are the parents of a six year old boy. A very wonderful six year old boy! Happy birthday, T.
Sunday, July 08, 2007
Thing is that no one at the hospital, therapy clinic, or insurance company knew about the state mandate. Our pediatrician didn't know about it. I just happened to hear about it at a meeting I attended several months ago. I forgot about it until about a month ago when I came across the notes I took from that meeting. I bought it up with the insurance company, and suddenly their whole tone with me changed. So here we are, and I'm feeling quite pleased with myself...but also wondering - yet again - about all the families out there that don't know about this. I have this vision...maybe it's my new calling...of having some sort of a guidance service for families with a child newly diagnosed with autism. There is so much information out there, and you are expected to be an expert immediately on every last bit of it...what if there was an organized, easily accessable group/company/organization that could be immediately dispatched to these families to help them navigate all this?
Yeah, I'll do all this in my spare time. Well, who knows?
The other good news is that we are settling into our new house in our new city nicely. T has actually been a real trooper - slept through the night on the very first night and every night since!
I am going nuts though, knowing that we can't start up his Verbal Behavior program until early August due to vacations and other conflicts, and school doesn't start until mid-August. So he spends lots of time just entertaining himself, which usually means rubbing his fingers together and grunting or saying "Uck, uck, uck...", or spinning a toy, or wandering around upstairs, playing with the toilet seats or our ceiling fan. It is a lot of work, unpacking our belongings and finding a new home for everything...and my old friend Motherly Guilt has settled in very well, worrying about all this un-engaged time he has while I'm working on the house. I seem to recall a similar post about this around spring break time, so this is nothing new, but still very real. But we've already installed a cool trampoline in the backyard, and just yesterday purchased a wooden swing/play set for him, which is sturdy and big enough to grow with him as the years go on. I'm looking forward to it being installed in a few days! I mean, I swing back & forth from worrying about all this down time and realizing that it is summer, after all, and every kid deserves some down time. So this will be Mom & T month, which will be good. We're almost done with all the boxes and unpacking, then we can at least go find a playground somewhere nearby.
In the meantime, I'm going to enjoy my victory with the insurance company. I also want to go see "Sicko" really soon!
Friday, June 15, 2007
News on the insurance front: our health insurance company has denied coverage for T's speech and occupational therapies. Their reasoning: these services are considered "educational" since he never had these skills. They only cover "rehabilitative" services - so if he had speech, then lost it due to an injury or illness, speech & OT would be covered. "So he's just supposed to stay non-verbal and unable to dress or care for himself??" I asked. It's simply not covered on our plan. Criminal.
The ray of hope is that I called in January (when we started him on this new insurance) and asked specifically if speech & OT were covered. I was told that it was. So we kept him going with weekly sessions at the local hospital's therapy clinic, only to get bills totalling (as of today) over $5,000.00 for his therapies. They have given us a one-time administrative exception form Jan-March because I was told that speech & OT were covered, but they won't cover April. That's just $1,007.00. JUST $1,007! Great scott. I called today to explain that they need to cover April as well. It is not right to expect us to pay over $1,000 out of pocket when they have acknowledged already that they were in the wrong. They weren't going to budge, but then I pulled out the trump card: Indiana has an Autism Insurance Mandate which requires treatments for autism to be covered. What they are doing may actually be illegal in Indiana. They are looking into this and will get back with us in 2-3 business days. Yes, and I have the Indiana Department of Insurance complaint form bookmarked and ready to fill out. I spoke with them last week and they said that it sounds highly suspect.
I'll keep this blog posted.
So many reactions, though...insurance didn't cover ESSENTIAL therapies for our son. He is one of a tsunami of children diagnosed with autism - what is going to happen next? Will insurance deny even more because it will simply be too expensive? What sort of premiums will we have to pay? Why didn't our therapy clinic know about the mandate? Why am I navigating this myself?
I knew I was going to have to learn to fight, really fight for him. I just didn't think I'd be doing so much fighting before he was 6!
Tuesday, April 24, 2007
Rob got an awesome job, worthy of his upcoming Ph.D., at a university not far from here. The guy didn’t even do a full job search - just put his name in for his “dream job” and a few months later, he got the phone call. I am so friggin’ proud of him, and try to remember to tell him so as often as possible.
So we’ve had to put our house on the market…and we accepted an offer 7 days later! What a whirlwind. We close, if all goes as planned, in late June, so we need to get going on finding a house.
That means we have to research the special ed and autism resources in our new city. We need to buy a house in the best district for special ed, and in the right elementary school area. This has been a big task, but we are pleased to say that this district has a FULL TIME AUTISM COORDINATOR, and we’ve been in close touch with her. What an incredible resource. We toured one kindergarten, and I cried tears of joy when I saw this classroom - it will be perfect for our little guy. I’m not kidding - I cried. This district is serious about learning about and training how to teach autistic kiddos. I can’t wait.
His IEP is tomorrow, and I’m still trying to learn special ed law before 3:30 tomorrow afternoon. I’ll do what I can.
And in the meantime, still keeping up with diets, supplements, meds, therapies…it’s nutty crazy around here, but all for very happy reasons.
Tuesday, March 20, 2007
So play with him, you might say. I say that to myself, too. It’s not like I ignore him, but here is how it goes:
I get up in the morning when I hear him start to coo. He’s peed through his overnight diaper so I make a mental note to change & wash the sheets as I take him for his morning toilette. But first it’s down to breakfast and the assembling of all the supplements: mixing some in nut butter which I have made, stirring some in juice in a sippy cup (did I remember to wash one last night, or are they in the dishwasher?) Damn, I forgot to run the dishwasher – or I ran it and have to put the dishes away. Start to peel his fruit and assemble his SCD (Specific Carbohydrate Diet) breakfast…there goes T over to the heating vent to rub his hands over it and grunt & grind his teeth. “Come on over here, sweetie, it’s time for breakfast.” Okay, here he comes. Ah, he’s eating. Check off the supplements & meds he’s had from the list I have on the fridge. Unload dishwasher – or run the thing if I haven’t already. Put tea on for me – coffee gives me headaches now. Curse you, caffeine gods. Encourage T to come back to the table again. Go upstairs while he’s eating to get his wet sheets. Take to washing machine – sonofabitch, there’s still wet wash in there from yesterday and the clothes in the drier aren’t dry yet. (I probably forgot to turn it on. Rob can confirm this for you.) Leave peed-on sheets in laundry room until later. Look at the clock, but it doesn’t matter – no therapist is coming today to keep him occupied. It’s all up to me today. Okay, start making my breakfast – I do have to eat. T is done with his and he’s off to the heating vent again, or downstairs to find something to spin. Take a few minutes to read the paper and watch Good Morning America as I eat my oatmeal with a side order of guilt while I hear T downstairs by himself. He’s grunting and grinding his teeth; he’s found something to stim on. Finish breakfast & go downstairs, check on laundry in drier. It’s dry now, so I pull it out, lay it flat so it won’t wrinkle but I don’t have to fold it right away & put on sofa. Finally put peed-on sheets in wash. T still stimming. Would like to shower, so I put on a video for T. On the way to said shower, I walk by computer and check email. Should be showering, but I’m not. Finish responding to email and video is over. Haven’t showered. Put another video in or turn on PBS and get in shower. Dishes from breakfast haven’t been done – kitchen is a mess. That will have to be cleaned up at some point, but I have to get in the shower. Okay, now I’ve showered. Dishes are waiting to be cleaned, so I do it. T is now going on at least 60-90 minutes in front of the TV. Great. Remember a recent posting about Baby Einstein viewing causing autism and curse the stupid people who wrote that rot. Go downstairs to play with T, and he’s happy to see me (joy of joys) but the stimming monster has set in and it is hard to break. Hard to get him to break out of that. Remember that I wanted to look at new recipes for his diet, so I go to the computer and fall into the abyss of checking the new posts to the Specific Carbohydrate Diet group & recipe websites, all the while telling myself that I’m helping him by doing this. I am, but clearly I could be trying to play with him.
And this is only 10:30 a.m. The rest of the day is similar.
Honestly, sometimes it’s easier to do all these tasks instead of trying day after day, moment after moment to connect with my son. Don’t get me wrong – I do connect each day, several times. And when I do, there is no better high than that. It’s just hard emotionally, and some days, it’s just easier to sit at the computer and research. Especially when it’s all me all week.
So spring break ended and we are now getting back into the routine. What a relief.
to my son with autism,
so sweet and unique.
i pray some day you will speak.
i watch you grow and smile at me
trying to figure out how life would be.
you have autism, which you struggle with every day
but mommy is trying and will continue to pray.
you look so happy with smiles on your face.
if I could take away the confusion, I would take your place.
i love you son more than I can say.
your love is so so real in every way.
your progress is slow, and sometimes very hard to understand.
but no matter what I will hold your hand.
i reach for the stars every second I breathe in a day.
my dear boy, I am so proud of you in every way.
you look at everything so pure and real.
i wish I could understand how you feel.
please talk to me sweetie, just let me know.
it will happen, even if it’s slow.
god bless my angel, be with him today
as I will continue to pray...
Wednesday, March 07, 2007
He reached out for me and pulled me into a hug twice.
We’re still working on being able to call me by name, or respond consistently when asked by a therapist “Where is your mom?” I can’t wait. He can point to my picture and even pick me out of a picture of several people when asked “where is mama?”, but referring to me personally is yet to come…but it will.
As of today, we seem to be almost back to where we were before Thanksgiving. Once December came, he had a sinus infection, an intestinal bug, and then all the upheaval with his classroom and turnover of his therapists...not to mention the GFCF diet that didn’t work starting in January…poor guy hasn’t been himself in a long time. It’s good to see him coming back.
And darn it, I’m not jinxing it. He’s getting better.
Monday, March 05, 2007
He's also more smiley today. He wanted me to tickle him, and has prompted me to play peekaboo and our little game "Come to Mama" (where I chase him around the living room.) It feels really, really good to start seeing his personality return. I'm addicted to his smile and laughter, and I've been on serious withdrawl lately.
Online notes from a DAN! conference a few years back noted that an increase of stimming and even hyperactivity is not unusual when starting these biomedical interventions. Relief...but I'll still watch him carefully.
I'm glad to report that a different nurse is returning my phone calls now - a very kind, attentive and patient woman! That makes my nearly daily calls much easier.
Sometime soon, I plan to write a "lit review" of why we are doing all these DAN! interventions, using the labs and cross-referencing studies, books & magazine articles supporting the use of each prescription, supplement & vitamin. This will primarily be for myself & Rob, but perhaps someday it can be useful for others. I guess also it's because I like road maps and check lists, and there are very few for us right now. We're not flying completely blind, but there isn't nearly enough guidance for my comfort level here. So maybe I'll feel better if I plot out where we've been.
Off to finish the data collection for his Verbal Behavior program this week.
Saturday, March 03, 2007
The prescribed diet is now the Specific Carbohydrate Diet, or SCD. In a nutshell (no pun intended) he can now only eat meat, nuts, fruits & vegetables. Eggs and some dairy are allowed on this diet, but his allergy test results…sigh…show reactions to ALL dairy, eggs, wheat, rice, peanuts, almonds, and more. These are food sensitivities, not life-threatening allergies, but nonetheless, these foods must be removed from his diet; some for 2-3 months, some for 6 months, maybe some indefinitely.
So now we are doing the SCD w/out dairy or eggs. Very, very interesting.
Why are we doing this? Because when the Organic Acid Test (OAT) results came back, they showed that he had a bacterial infection and yeast overgrowth in the intestines. If you’ve got yeast overgrowth in the intestines then mucus builds up in there, and food can’t be absorbed properly. Food essentially rots or ferments in there, causing the bacterial infection. So you’ve got all sorts of infected gunk in there, the intestines aren’t working properly, and undigested proteins leak out of the gut. There is plenty of research out there that shows that there is a definite brain-gut relationship: if the gut isn’t healthy, then the body doesn’t get the nutrients it needs, therefore the brain isn’t getting what it needs, and (the theory goes) this results in brain dysfunction. Layman’s terms; my apologies to anyone reading this that is an expert in all this.
The science behind this makes more sense to me, I have to admit. We knew about the yeast overgrowth while he was on the GFCF diet, but it didn’t make sense to me that yeast or yeast-producing foods were allowed on the diet. How are we getting rid of yeast if we’re feeding it? (Treating it very well, hah hah hah.)
SCD gets rid of the yeast long term by depleting it – or not feeding it. So that means no sugar, no starchy foods (breads, grains, potatoes, etc.) but instead eating proteins and produce. It is a very healthy diet, but it will be a huge learning curve for me. Most everything needs to be baked from scratch. I said to Rob today that as I walked through the grocery today, I was struck by the fact that our T couldn’t eat most of the food in that store. Even our beloved turkey, chicken & ham lunchmeats, by Boarshead, as pure and wonderful as they are, have sugar in them. Who knew? It felt very odd, and yet I felt like I was rising above it all, walking by and knowing that “that isn’t good for my son.”
That is this week.
Last week, we had to start this SCD diet, which was pretty intense. Also, the med we were giving him for the bacterial infection (metronitazole, or Flagyl) was making him sick…only we weren’t aware. Turns out it’s notorious for causing nausea, but we didn’t have that information. Also, it’s kinda hard to know if your kid is sick if he can’t say “mama, my tummy hurts.” All I knew was that it was taking me anywhere from 20-45 minutes three times a day to get this medicine in him, and that he was not himself. (Yes, that meant that up to 2 ¼ hours each day I was sitting in front of him with a medicine dropper or spoonful of applesauce with the metro mixed in.) He threw up one of the first times I gave it to him, but that was the first time I gave it to him first thing in the morning. The nurse (she’s not so snippy with me now, by the way) advised me that I should split up the dose and mix with food, but several days later he ejected it again. Only then did I realize that the reason he didn’t want to take the medicine wasn’t because it made him sick that one time, but that it was making him nauseated ALL THE TIME.
So we’re on a new med now which he seems to be tolerating much better. Boy oh boy, he’s stimming much, much more, but (those with weak stomachs turn away) his stools are actually formed for the first time in months. GFCF made his BM’s almost diarrhea-like. And my sister, my true guiding light through all of this, said that some of the other, um, characteristics of the stools indicate that he is absorbing food well, which is good good good. Rob & I are hoping that as we continue with this med and then move on to the yeast meds that the stimming will subside. Today he stood in front of his chest of drawers, and rubbed his hands over them and grunted and was grinding his teeth. That is usually saved for the heating vents or fans.
*Sigh.* I feel like so much of my time I’m suspended between two realities…joy over progress and deep concern for the regressions.
What keeps me going with this is the glimmer of hope. This may help him. Yes, it crosses the line of mainline medical approval – most docs brush aside the DAN movement and most of the biomedical interventions. But why is it that the kids that I see that have made the most progress are the kids doing the DAN protocol and intense home therapies like ABA or Verbal Behavior? How can the blood, urine and stool test results showing these infections be ignored?
Keeping the faith. Moving forward. “Just keep swimming, just keep swimming, just keep swimming…”
Thursday, February 15, 2007
He wanted a hug. He wanted to be consoled.
I stood there, holding him against me, suspended between the heartache a mom feels when her child is hurting, and the sheer, almost tearful delight I felt over his coming to me for comfort.
I’m sorry he bumped his head, but I have had a very warm feeling all afternoon since I was able to console my son today.
We haven’t heard back about allergies yet. That should come any day now. I’m trying not to worry about an allergy to corn or soy. Those are pretty typical allergies, and could have a huge impact on the dietary changes we’ve already made for him. But I’m not thinking about that – don’t have much time to, anyway.
Have we seen any changes? Hard to say at this point. He has been able to sit with one of his Verbal Behavior therapists for 40 minutes and work – with reinforcements, but no breaks. Remarkable. He also came to me for comfort today – that merited a separate post. Rob says that he sees less aloofness, which is good. I’m with him all the time so it’s hard to notice subtle changes. But then again, my sister lost like 80 pounds back in the 1980’s and since I saw her all the time I didn’t notice until I saw pictures of her from several months previous.
On the downside, he is much more “stimmy” (short for self-stimulatory behaviors.) He shakes his hands in front of his face, grinds his teeth, and literally runs in circles at school (I witnessed this myself last week.) No running in circles at home – he has the humidifier and various spinning toys that he rescues from their hiding places to meet that need. Aggression has reared its ugly head again – he hasn’t pulled my hair in months, and just a few days ago pulled so hard that I nearly cried. Granted, I thwarted him from doing something he wanted to do then proceeded to confuse him, but he hasn’t tried to hurt me in a long time and I was really, really surprised and sad when he did (I learned from experience not to react – not even change facial expression when he does things like that – but this time it was impossible.) I understand that this sort of regression is normal when starting the GFCF diet and yeast meds because their little bodies are going through so much with the yeast dying off, and they just feel bad for a while. But as I said to my sister last night, I’m ready for him to feel better and to see some results from all this effort.
So long story short, we’re riding this experiment out. I’ve been told to be patient, and I’m doing my best. That’s what my life is about, anyway – immense, unending patience.
Friday, February 02, 2007
Collected stool sample and urine sample from T to send off to two different labs. Said prayer of thanks that he will now, occasionally, poop in the toilet and therefore into the makeshift potty sent home by the DAN doctor to catch the poop before it goes into the toilet. No toilet water or pee contamination allowed. Stool sample had to be put in four different vials and taken to local hospital. Thankfully when I go, there is no one else waiting to register (yes, you have to register at our hospital just to drop off a lab.) T jumps around the lobby while I answer all the questions by the receptionist. A kind woman, thankfully. Urine sample sent off via Fed Ex to lab in Kansas. Collected at 3 & 5 a.m. Yawn.
Receive letter from DAN doc saying results of “recent routine lab tests” were within normal limits. What were those tests? What were they testing for? Call DAN doc’s nurse. Gets snippy when I ask too many questions. Make mental note to tell doc to send home a flier with patients that describes all these tests and what the results may mean. This would 1) be helpful to parents and 2) mean fewer calls to nurse who gets annoyed by the amount of calls she’s getting. I should be the office manager for DAN doc – hah – in my spare time.
Shop at local natural food grocery on weekly 10% off day (not the co-op – I wear mascara, use deodorant and live on the grid, so I don’t feel too comfortable shopping there. Joking – kinda.) When employees see the binder I have with me to tell me what foods are GFCF and okay for T to eat, they go to work with me, trying to find foods for T. Hadn’t even asked for help. Bless them, bless them. Buy myself Newman’s Ginger-O’s cookies because I’ve earned it, damnit.
Local organization called that provides Respite care for us. Seems our provider is medically no longer available to drive for 3 months, maybe more. Do we want to continue with this provider or get a new one? (Provider is scheduled to come two nights in a row in the next few days – no time to get a new one for now. Providers must be trained, have an orientation meeting w/ us, etc.) Legal ramifications of having provider w/out transportation? Decision: we’ll keep her on for the next two visits, but send someone else out for training as a Plan B.
Preschool Special Ed Coordinator called to continue the proceedings of securing the make-up speech and occupational therapies that he missed ALL of last semester at school. Can I meet with the Speech Therapist at school at noon? (She’s speaking with Rob – I’m at the therapy clinic with Thomas getting his private Speech & Occupational therapy. Won’t be home until 10:30.) When I get home, I call her back – get voice mail. Call the school – get voice mail. Call the office – Speech therapist happens to be right there. We work out that she’s going to come here to see how we have our home set up with picture schedules & visual supports to help T. They’d like to do this at school, too – the way the previous teacher who resigned had them. Stomach churns as I remember the pain and bitter disappointment of that drama last month. Forget that - no time to marinate on that anymore. Or so I try to convince myself.
Medical release form needed to be taken to local pediatrician to be signed & returned to PALS so T can have his therapeutic horseback riding lessons again this year. Should have mailed it weeks ago, but it got lost in the shuffle of papers in my disaster of an office.
Researched the labs done on T on the web. Find answers to my additional questions there. Don’t have to bother snippy nurse. Silently stew about nurse & her lack of interpersonal skills. Try not to take on the task of fixing that situation – just deal with it. But I’m mentally writing a letter to doctor…
New weekly lesson plan for T’s Verbal Behavior program written - 2 hours. Maintenance probe data entered – 2 hours.
Binge on Twix “fun size” bars, potato chips (GFCF!) and Ginger O’s. Yes, it DID make me feel better.
Filled out Autism Treatment Evaluation Checklist (ATEC) online. (You do this every month or so to track improvements in speech/language, sociability, & sensory/cognitive awareness while doing the DAN protocol.) Server down so I can’t send it in. Nice. At least it was still there when I hit backspace. Tried again this morning – voila. Thank heavens for small blessings.
Call state’s Dept of Health to start process of applying for Special Health Care Services (“…a supplemental program that helps families of children with serious, chronic medical conditions pay for treatment related to their child’s condition.”) Speak with a saucy, funny woman who tells me exactly whom to call to get an appointment so she can fill it out for me. Smile at the wonderful energy of this woman on the phone. Very different from usual tone of conversations w/ state agencies.
Discover – after numerous phone calls – that neither option school system is offering to make up speech therapy missed last semester is going to work with T’s schedule. This is why it should have happened last semester, but can’t marinate on that either. Call Spec Ed coordinator, leave message that we need another option. Worry that this is not looking good for T – and he is not going to be the one that gets the short end of the stick again.
He’s had a cold this week, too.
Lab tech, medical interpreter, nutritionist, legal expert, special education law advocate, courier, researcher, Verbal Behavior program director, insurance advocate, nurse…
The thing that kills me about all this is that it takes away from my being able to be a mommy. All this can’t be done in the 2 ½ hours he’s at school. Just part of the tragedy of all of this. And time to be a wife, too?
We do have friends coming over tonight, Rob & I have a date night tomorrow (a free night of babysitting from one of his VB therapists was our Christmas present this year!), and I’m going out to dinner with other mommies from church in a few days. So we carve time out as we are able.
Very well-meaning people ask me what I do for myself. Right now that is just another “should”, and someone once told me never to "should" on myself. This blog is a great release for me – and frankly, the responses I get bolster me enormously. American Idol, Scrubs, Dallas reruns and an occasional Nora Roberts book give me a little escape time during the week. And what would I do without The Daily Show & Colbert Report?
And I have found a few moments to play with T. His sheer exuberance and huge smile when I hide behind the couch and jump out at him is such an immense source of joy for me. And I get hugs occasionally. There is nothing like the joy of your autistic child smiling at you, reaching out to you or wanting to play with you. Hopefully this will all calm down soon and I can spend more time with him.