January 2005 -
Lots of changes in the last few weeks. Jack was really doing so well. Late October and November were great. There’s an awesome little boy in there. Now to get him to the surface. We’re banking on the fact that we are going to hit a rough patch that, once beyond, will bring amazing things. I hope we are not disappointed. We’re counting on this!
Jack’s teachers, the school days of the 18th and 19th, were beside themselves with praise for Jack’s behavior, compliance and overall “typical-ness”. I am so proud of that! Jack sat in circle time without being prompted, attended perfectly during Flashcards and all around was a sweet boy with a special spark in his eye that his teachers said they had not seen before.
We started TD-DMPS 3 days following the first B-12 shot. Didn’t see anything good or bad. That sounds good to me. Then on the 23rd, just around the time we arrived at MeeMee’s for Thanksgiving, Jack started screaming more. He was a bit resistant when asked to do some things, like sing, which he had been willingly been doing for the past few weeks. We assume the change is yeast related, as DMPS can trigger yeast growth. We had also dropped the dose of the Nystatin from 8 tsp/day to 1.5 tsp/day maintenance dose. By the time we got home on Sunday, the 28th, there was no guessing that something was going on and it wasn’t necessarily going to be easy to deal with. Monday afternoon ABA session was ugly, as were ALL therapy sessions Tues & Wed. Additionally, we are seeing more screaming and increased difficulty in transitioning. Meltdowns at bath time, etc. Oh boy. What fun.
Our OATS results show elevated yeast and bacteria. 2 new scripts. Hoping that what we are seeing is yeast related and will dissipate with the Diflucan, but also preparing ourselves for a bumpy ride for 2 or 3 months if this is DMPS related. That would be all of December, January and possibly February until there might be light at the tunnel’s end. If that’s the case, it’s going to be one dark winter. Ugh.
A little note about the B-12 shots. Seems I’m an idiot. Correction: seems I am truly a non-medical not-even-able-to-be-called-an-amateur uneducated idiot. In my defense, the pharmacy sends a vial that says .3cc per day and a bag of syringes. That’s it. No instructions. Nonetheless, we have been dosing at 3 units (the syringe, of course, uses different language). Figured out yesterday, 3 weeks or so into the shots that we are supposed to be giving 30 units. What a big fat duh!!!!!!!! No wonder we didn’t see any magic.
Going to an ENT doc on Friday. Had some nose issues that just won’t quit. The most bothersome is a feeling that my nasal cavity is constantly closed. This may be due to an allergy issue, which would be another doc altogether. Might be caused by the enzymes. It is driving me crazy! I don’t have time to have ISSUES!
NEWEST INTEREST FOR JACK: Dora! Especially the Dora episode with the TRAINS. Go figure.
One month since the start of DMPS. While he hasn’t begun rattling off trigonometry equations, he has not begun biting himself and running up the walls either. Guess I’ll take that. We’ve seen a slow and steady consistent measure of improvement. Is it greater or faster than what we’ve previously seen? It sure is hard to tell. Could this be the greatest placebo trial?? He was a bit more stimmy a few weeks in, but that seems to have leveled off at a somewhat “normal” state.
The ride of a lifetime…every day. Today started out like many others. Busy! Wednesday is our early day: we have to be out by 8a. At 7:05 THIS morning, we were all still tucked safely in our beds with visions of sugarplums. I sprung out of bed and got dressed, foregoing the a.m. shower (again) due to time constraints and lack of desire (we’ve been up until midnight or later each night this week watching Season 2 of 24) and raced to fetch sweet Jack and hurl him gently into our Wednesday abbreviated morning routine. One thing to note: he was awake, but was not scripting. I heard a peep once or twice, but no Dora “blah blah blah” at all. Not sure of what to make of that, so I’ll just note it. He brought his blanket and pacie with him to the rocking chair (also less than usual) and we rocked for a bit in silence until he requested going downstairs to watch a movie (daily occurrence). Cuddling and quiet on the couch, I turned on Sesame Street, which was watched with limited enthusiasm. We rushed through the morning routine and I wondered, for a moment, what the day would bring. OT and ST were very positive experiences. Susan commented on how engaged and happy Jack was today, which I had noticed yesterday all day! So giggly, in an appropriate way. Such big smiles. Such LONG looks. Joy. Since we wrap up early on Wed., I thought we’d dash over to the big park for some recreation. Oddly enough, it is 68 degrees here today. There were only 2 kids at the park, and they looked just slightly younger than Jack. They were chasing each other down the slides, giggling happily, clearly excited to play together. A few times one would cry out to their Mom, “But she won’t slide with me. I want her to!” Jack had a less than peak performance on this day. He chose to run laps around the perimeter of the park on the sidewalk, scripting Dora as he went. Last summer he loved to play on the equipment here and could swing for :30 at a time! Today he barely gave the play area a nod. I finally intervened, to his dismay, and interrupted him every ¼ of the circle and made him swing or climb or slide. Once completed, he could go back to the perimeter. He hated the intervention, and collapsed and screamed each time I forced him to “play”. Other kids his age came to the park, and my attention to his abnormality at the play area increased. Finally I’d had all I could take. I directed him, unwilling to leave, to the car and buckled him into his car seat. On the way home my eyes welled up with tears for the little boy he isn’t. Partly for me but mostly for him. It’s amazing how different I can feel about him and his autism based solely upon what benchmark I am using to measure his progress. At home, I think he’s doing fantastic. I question the need for so much therapy. I imagine him as a normal little school age boy doing everyday school age things. At clinic I see his progress. I see some of his deficits, but he’s talking! I see those who haven’t made as much progress, especially those who are older, and I am relieved that he has overcome so much this year. But then I go to the playground and see him against those he will truly be measured against, the only true benchmark of what is “typical” and I am crushed. Not only doesn’t he care about playing there the way 100% of the other children want to, but he is oblivious to their existence. A truly autonomous presence. The world is flying by and he is unaware. It is moments like this when I do question what gains we can make physically through biomed intervention. Surely it has its limitations. Perhaps his brain is just wired differently and all the effort in the world won’t change that. Moments like these deem days like today HARD DAYS. Yet today is no different than yesterday, which was a good day. But my perspective has shifted. I have caused today to be judged a BAD DAY. It’s me. Perhaps solely within my control. But how?
Valentine’s Day…and I’m ever so in love, with my baby boy. So much has happened over the last 2 months. Gains almost immeasurable! From the benefits of the MB12, to the lows of a massively bad diarrhea combination of Rotavirus and an Antibiotic (13 days of bottom trouble), and a definite casein reaction last week, Jack is in a new place developmentally. He is doing so well. He still does best engaging when it is just the two of us. I am his confidant. Today we celebrated Valentine’s Day with a picnic at the zoo. It was charming. In the 60s, breezy and clear, it was the perfect day to spend some time (mid Winter) outdoors! With a view of zebra and ostrich, we ate our lunch at a picnic table. Jack sat next to me, like a big kid, properly on the bench, with his hand resting on my arm, perhaps for comfort. A few times he exclaimed “Happy Valentine!” and I beamed. We looked like any other family at that moment. We walked around the zoo and played for a bit at the playground before we had to cut our outing short to adhere to our rigid schedule. Nap by 1:30 to be up by 4 to be ready for ABA (session 2 of the day) at 4:15. He has no idea how his days differ from his peers.
Birthday party, take 1. I cried as I placed him in his crib tonight. He was having such an awesome night. He had a birthday party with his Grandparents and he got it. He knew there were presents and he opened them eagerly. He saw his new viewmaster (which he calls a telescope) and peered in. He commented on Thomas and then Dora and said "It's SO beautiful!" as he looked at the pictures. Then they brought out a shiny new tricycle and he jumped up excitedly. He rode it for a few minutes and then was back to his "telescope". He enjoyed his "birthday cake" and had a great time. What a difference from a year ago. What a difference from Christmas, even. Yet, as I tucked him in to bed and said "Bye Bye. See you Sunday." my heart grew heavy. He has no idea that we are leaving and won't know why we aren't here. I'm sure all kids go through this at some point in toddlerhood, but it is painful nonetheless. Hopefully there won't be too many tough moments for the three of them until we return.
We all survived…and with flying colors! Mom & Dad were awesome parent replacements, stepping in without missing a beat. Jack did great. They noted that he seemed a little bit quieter and, perhaps, somber on the last day, but overall did wonderfully! There WAS the little issue of his all out panic attack in the tub, but other than that he has escaped unscathed! And Mommy fared well also. The first night there, I awoke with an emptiness in my heart. As though I had left something behind that I was responsible for. But once I began day 2, I realized that this trip was truly a gift from my parents. Their willingness to take on all of the responsibility of his care should not be received lightly. And from that point on I enjoyed myself to the fullest. Scott and I reconnected, I was pampered, and it was relaxing. I know that these moments will be few and far between for now, so I embraced my freedom. The last day there, Mom had Jack say a few words over the phone. He sounded so little! I had never heard him on the phone before. It was precious. And I missed him even more! The homecoming was sweet, and he was all smiles as we came into view at the airport. We were happy to be reunited!!! And Mom & Dad feel even closer to Jack than before, I suspect. The trip was awesome for us all.
Jack astounded us tonight. We went to Morri Faith’s birthday party at Pump It Up. I did not have great expectations for Jack’s participation there, since he has always adamantly refused to play on any blowup structure for as long as we have been around them: at 18 months at his school’s Fall Festival, this past Halloween at Julia Johnson’s birthday party and just a few weeks ago at playgroup, where a family had a small version of one in their den. But we went anyway, hoping for something good. Jack toured the facility privately before the party, and immediately started saying “No thank you!” as we coached him to try out the equipment. But then the kids came running in and he saw them sliding down the 15 foot slide. His eyes were as big as saucers! I asked him if he wanted to try it and he said “Yes!”. I still didn’t believe he’d do it, but I carried him up the slide. He LOVED it!!! Over the course of the next hour and 15 minutes, he conquered any previous fears of the blowup jumping equipment! By the night’s end, he had tackled the 15 foot slide ALONE!!!! He jumped in the enclosed jumper and rolled off the center mountain! He mastered the 4 ft. inflated rock wall in the obstacle course and was trying to accomplish the 10 ft wall! What an astonishing night! And of course, me without my camera (I thought there wouldn’t be anything to see!). Shame on me and hurray for Super Jack! He was awesome! We were the most proud parents…
Happy Easter! We just returned from our annual Easter trip to Meemaw’s. This year we actually “hid” eggs in the yard for Jack. He had a good time hunting them, thanks to Dora (and Grandma & Grandpa who sent the video) who explained the art of hunting eggs in “Dora’s Egg Hunt”. A current classic. Jack’s scripting is up again, so we are hearing all about the egg hunt with Dora. He did well traveling and really enjoyed having the DVD player in the car. He was disappointed today to see that his “computer” was gone when we went out to run errands.
He is suffering from diarrhea again. I’ve now concluded that he cannot tolerate Vancomycin. We are supposed to be on a 3x day every other day regimen. I have him on either 1x or 2x day every other day and he is still going 5-6 times per day. He’s eaten up with diaper rash and has taken to lying to me when asked if he has poopy pants, since the changing itself is miserable (I guess I don’t blame him). We are going to have to stop the Vancomycin and wait for our consult on 4/18.
I cannot believe we are 2 weeks away from transitioning to Metro. The heat is on. I am overwhelmed with the prospect of singlehandedly fighting the School District for his services. I’m not sure this advocate is helping as much as I need. Why in the world are we expected to represent ourselves against people who do this on a daily basis? If I were to show up in court wanting to defend myself, people would think I was a loon! But here it is expected. It is an absolute absurdity. I pray that our experience defies the norm. Perhaps I’ve built it up to be worse than it will be. I can only hope.
In a last ditch attempt to utilize TEIS’ services, we have a feeding evaluation at Easter Seals on Wednesday. I hope they can assist us in some way. Jack’s food selections are so narrow. It makes mealtime a little bit of a battle, even without any progress! He’s down to eating chicken nuggets or pb&J for meals and, of course, he wants fries. Other than that, or pancakes or waffles, he’ll eat fruit. That is about it. Chips and cookies too, but nothing else. No meat, no alternative bread, no vegetables…I could go on. We need some advice that will work for Jack’s combination of sensory issues and autism.
Ugh. Whew. CALGON!!! This would be one of the darker moments on the journey. We’re in the middle of a therapeutic-custody battle with Metro over Jack’s proposed IEP and services, they are now bringing in the “heavy” for round two (the Spec. Ed. Director) and Jack’s having a bit of a rough spell. It sometimes feels like it is just too much! I went out this afternoon to run a quick errand and found myself, on a beautiful Sunday afternoon, tempted with the notion of driving forever! Maybe not forever, but for a good long while to a destination unknown. What is that? Stress to the nth degree? I would actually choose to abandon my family and drive without purpose? This is not a good sign.
Note to self, in my next life, I’m going to set up a system by which all special needs families receive an Advocate, at no cost, to deal with the school system. This is Board of Ed vs. Joe Nobody and Joe isn’t feeling too good about the whole thing.
Jack is off. I can’t exactly put my finger on it, but it seems a bit yeasty. Screamy, less compliant, scripting to the point that he doesn’t always hear you speak, constantly playing trains, getting in movie jags…for 2 weeks straight it was only Thomas, now it is Baby Einstein (particularly the original, which features 15 different languages, which is getting put away tomorrow for good!) and an overall demeanor that is worse than what we saw a week or 10 days ago. That was bliss! He was so awesome! Much more typical. I did read tonight that kids who are getting better (typically through chelation) either look ADHD, Tourettes or OCD. And the author claimed that this behavior is transitional as they recover. Once recovered, these behaviors subside. IF this is true, and this is what’s happening, I’d classify him as mostly OCD with a little ADHD. Eloise is here today and she commented that he didn’t seem “right”. Said he seemed hyper and screamy. You know, it’s bad enough when it eats at you all day…but it is just plain over the top when other people, even with the best intentions, point it out.
His birthday was a success. He seemed to enjoy having the kids over, played well outside with them and even chose to sit outside with them over his standard place at the kitchen table! I’m glad I had the party. Funny that I had considered not doing it. Hindsight is an interesting perspective. I wonder what all of this will look like with hindsight glasses on?
4th month chelation records have come in the mail. What a depressing moment! Nothing remarkable to share. Consult w/Scott Smith tomorrow. Perhaps he’ll shed some insight. I keep hanging my hat on the thought that Dr. McCandless’ granddaughter didn’t excrete until 9 months into the process. Gotta keep having hope. And he’s really a different kid now. Surely the DMPS is playing a role in that.
Medical attention week here on the Halbert Channel! Sunday afternoon Jack had a hard time waking from his nap. Tuesday morning we had the same super-sleepy disinterested little fellow, coupled with blue fingers and ashen lips. A pediatric visit and blood draw found nothing. A consult with his Autism doctor revealed DMPS the likely culprit. We are watching him like a hawk over the next few days to determine any changes in treatment… Then Thursday, in perhaps a peak moment of exploration or boredom, our sweet son shoved a dried black bean up his nose. Just like that…we were off to the ER. This was traumatic for Jack, things like wearing a fingertip pulse occ monitor, enduring a bp cuff on his lower leg…were just the beginning of a tough afternoon, as he was wrapped mummy-style in a sheet, placed on his back on a bed and “tortured” with a nasal speculum and otoscope. All to determine that the bean was no longer lodged in his nose. Yup! The bean turned up at home at the top of the garage stairs. I’m wondering if that will be the last time we make that trip!
Jack seemed to improve between that entry, 4/17 and a week or so ago. My guess is that the full two week course of Vancomycin and Sporonox were quite effective. However, a few days ago we went back to the every other day regimen, and now it is a tough time behaviorally for Jack again. Lots of screaming, crying with transition…today he protested vehemently as we turned into the Grocery parking lot, something we do often after school. Seems like he wants to be home…in his safe environment, playing with trains or with a favorite, predictable electronic toy/computer game. Poor baby. Wonder what he’s feeling. Mom & Dad bought him a new pair of sneakers a couple weeks back. He refused to wear them, crying “shoes OFF!” over and over. So, I took them back and bought a second pair, these a little more like the current pair. I put them on him this morning. He wore them for a few minutes until he noticed them. And then we were back to the new shoe protest all over again. It seems like it will be a miracle if he gets better on days like today. He’s pushing, kicking, hitting. I guess he sounds like a typical 3 yr old, but he’s anything but. Yesterday was the school picnic. He screamed to go to the car, had tremendous difficulty transitioning to the picnic scene. Finally agreed to eat ONLY if he could sit in my lap. Thirty minutes in to an hour and a half event, he was begging to go home. Not his best day.
On a positive note, I’m hearing “MOMMY!” often. Sometimes he’s calling me and sometimes he’s addressing me. It’s really great. Yesterday he said “Come with me, Mommy, please.” Previously he would label me, but not call me or address me by name. It sure sounds sweet. A diamond amongst the rough!