Some Possible Answers

Since taking Gus off his medication, I've looked for some alternative ways to help him focus during the school day. He's had a great week, only one less focused afternoon. That's pretty darned good! The weather is a big factor; he's just naturally more hyper and has a harder time during the colder months. But it's looking like physical activity and noise have been playing a big role as well.

It seems that when Gus has lots of physical activity on a daily basis, he's more focused in school. This is not surprising. Exercise increases serotonin, dopamine, norepinephrine and endorphins. The neurotransmitters control alertness, emotions, and concentration, while endorphins are natural mood lifters. So, I've made it a point to make Gus exercise for about 10 minutes every morning with a peddler - an exercise bike without the seat part - spending 5 minutes working his legs and 5 minutes working his arms. After school, he's been either swimming at the beach or walking or something else to get him out and moving. I think that if I can work something out with his teacher in the fall where he has a break midday to do some exercises, everyone may have a happier school year.

The other change we've made is that Gus now uses headphones in the classroom. It seems that when he doesn't have to be anxious about noise, he can concentrate better on his work.

So I'm feeling optimistic about the possibility of a drug free school year to come. Now I just have to find an exercise regime that we can afford and that will be interesting enough for him to want to do it every day.

Wonderfully Imperfect

Gus has been off Strattera for a few days now. I will admit, he's a little less focused and a little more hyperactive. I find myself having to tell him to do something ten times instead of eight. And ya know what? I'm so happy!

The Strattera seemed to suppress something essential in him. He became 'dulled.' I can't go so far as to say he was like a zombie, but he certainly lost his light. Sure he was calmer, but he wasn't Gus. Even the bus driver, who hadn't seen him since last summer, immediately noticed the difference.

As much as I'd like him to be able to focus, I don't want to lose all the parts of him that make him special. He's laughing again. He's running and animated (boy is he running and animated!) He's joking and singing - exuberant! I'd be an idiot to not want this version around. And he's sleeping again, thank heavens! One very interesting thing - I took him to a crowded beach today and he didn't have single problem. (He had two minor incidents last week, in a much smaller crowd of beach-goers.)

I'm sure that there are many people in the world who think the dull version is more socially appropriate, just because he was quieter, but they can, quite frankly, bite me.

Freedom

Gus's last day on Strattera was Monday. It's a huge relief, and I feel like I've got my son back. He's more animated and he's eating again, thank goodness! So far there haven't been any major complaints from school. He was a little squirmy on the bus yesterday afternoon, and he was a little chatty and loud on the bus this afternoon. Otherwise, no unsafe behavior.

I got to observe him at school yesterday for a little while and the teacher seemed pleased and impressed by his encyclopedic knowledge. I'm sure she could have done without the low-level talking to himself, but she took it in stride.

He's been showing signs of sensory turbulence lately. He'd been okay with noise for a long time, but lately, since the spring, he's been covering his ears more and more. Now there's a student in the class who screams randomly. We're considering noise cancelling earphones.

Amazing how much easier I'm breathing this week.

Strattera Update

After a brief period off of Strattera, Gus has been back on for a little while now. He started at 10 mg and then increased to 15. I took him to the doctor last week, it had been almost a month. The word she used to describe him was 'loopy.' He was not running all around the room like he usually would, but he wasn't exactly what you could call focused either. Instead of his body buzzing, his brain and mouth were motorized. He went on and on about Who Framed Roger Rabbit, very perseverative and going a mile a minute. Our pediatrician wasn't sure what to make of Gus's behavior, so she consulted with the specialist.

The specialist felt that Gus was not on a high enough dosage to see any result. He wanted to go for 36 mg a day, but the dosing guidelines limit his size/age at 25. So he started on that level this weekend.

The only real difference I see is that the meds are making him subdued and sleepy, but I don't know if that equates to focused. He's less responsive when I call him and still needs lots of reminders to complete tasks like getting dressed, maybe not as many as before, but not a huge improvement there. On the other hand, he is having some sleep issues (waking up before 5 am randomly, getting out of bed several times at bed time, sometimes waking in the middle of the night). He's not eating normally. Several times I've had to feed him. He's still anxious and has been getting grumpy on & off, but he's expressing himself more clearly.

This morning, about an hour after taking the meds, he started complaining of feeling sick, tired and of a headache, which is very out of character for him. Even when he's sick, he rarely complains, which told me that he had to be feeling pretty bad, at least for a while.

So I don't know. The side effects haven't been earth-shattering, but neither have the positive results. I'm thinking this medication may help a bit, but ultimately is probably not worth it. We'll have to let him adjust to this new dosage, but it seems more pessimistic by the day.

Beating the Heat

The heat index is reportedly going up to dangerous levels today and tomorrow. Days like these, I worry about Gus, not just for the obvious reasons, but because his body never seems to respond well to even less intense heat. He gets awful eczema all summer long, incredible angry red bumps and blotches all over the backs of his legs and inner elbows. along with the inflammation come itching and discomfort, sometimes he rips up his skin something fierce. The rashes have, at times, extended to more unmentionable parts too, which is my big concern today.

Last week it was hot, but not sweltering. He apparently kept fussing with his pants and before the end of the day, he pulled them off. His tactile sensory issues are usually only a problem if he gets his clothes wet, so I concluded that his skin was the issue, not the clothes. I put what I could on his skin today to keep him comfortable (as much as I hate using steroids i.e. hydrocortisone, I can't watch him suffer for the next three months). So hopefully, he'll keep his pants on - literally - today. And I really hope that someone has the good sense to keep the little ones indoors, out of the beaming sun, today.

If anyone knows of any natural eczema ointments or creams that work really well, please comment and let me know! It would be great to help him without the steroids.

Can't Tell If It's Working or Not

The higher dose of Strattera may or may not be working. It's hard to tell. Gus has been generally calmish except for little bouts of hyperactivity (in varying degrees of intensity) in the evenings. He's had decent days at school, but he's been crying a lot. Yesterday I asked him if something was bothering him and he said, "My head felt like a squished plantain." It seems like the medication may be helping a little in some areas, but overall, not a great difference. And the sensory issues still seem heightened. The impulse control, which is what we were hoping to help the most, is still not there. Yesterday, Gus decided it would be a good idea to hang from the curtains, and the curtain rod was pulled clean out of the wall. This was not the first time it's happened. Tonight my husband caught him chewing on the controller wires for his Gamecube - again seeking that oral sensory stimulation. He hasn't had problems with that in quite some time.

So I don't know that the medication is worth it, especially with comments like the one yesterday and some of the behaviors we're noticing.

Location Could Be Everything

I just had an interesting chat with the morning bus monitor. Gus has been able to get out of his car seat and has gotten up, but he only does it when the bus is stopped and they are waiting for the teachers to come out and get the kids. The impression from both bus monitors is that he's really smart and sweet and funny. He's not using any negative language or behavior during his hours with them. This is consistent with the way he generally behaves at home. He went through his phase of 'potty mouth' and occasionally gets nasty, but so does every other kid. Mostly, he's got a very laid-back, likable personality.

So the monitor made an observation about his ear-covering, which he's started doing these past couple of months. She felt that maybe he was just exposed to too much 'noise' during the day and is trying to block it out. By noise she meant corrections, instructions, demands, other kids...It's true that there are a lot more expectations on him than ever and being in a mainstream school building, visiting some mainstream classes (music) may be too much stimulation for him.

I can't argue that even though he wasn't getting as much in the realm of academics last year, he was certainly a happier kid and his staff was happier with him.

Unexpected and Curious

Today marks the fourth day of Gus's Strattera re-trial. Our first go at the medication ended after about six days because his behavior became wild on the afternoon of day six - to the point of endangering himself and the other people on the school bus. The doctor and I worried that increasing the dosage would make matters worse, but the results have been surprising.

Gus's behavior at home this weekend has been vastly different than what we heard from school. He's been very calm for the most part, sleepy even toward the afternoon. Yesterday there was one brief bout of grumpiness because he wanted to play a computer game and his sister wanted to watch TV, so he locked himself away in his room for a while. But there's been no name-calling or rudeness. As a matter of fact he was at a birthday party at a very crowded place and was just great. Around 5:30 he got a little burst of hyperactivity; last week it came a little earlier than normal - about 3ish.

One small issue he had last night was that he kept getting out of bed whereas he is usually the first to fall asleep. It was especially weird since he was completely exhausted from the day. But sometimes being too tired can effect the ability to fall asleep, so I won't panic over it.

Now, he'll be getting to that point where he started having serious problems early in the week. It seems that the increased dosage pushed back the bout of wildness enough that he hasn't had any bus trouble yet, but we'll see. If there's no major change for the worse on the bus, I'm willing to keep him at this level for a while longer and I'll probably even let teacher know by Tuesday or Wednesday, depending on when I speak to Doc. I'm sure she'll be pissed that I didn't tell her sooner, but scientific studies are often done blind for a good reason.

A Society of Meanieheads

A few days ago a story came out about a five-year-old boy in Florida, Alex Barton, who was voted out of his kindergarten class. The teacher should be ousted permanently and I hope to heaven that the parents sue the school and the teacher for everything they’ve got because the behavior that the teacher displayed was all kinds of disgusting. Unfortunately, her attitude is not uncommon enough.

There’s always talk about social skills that children need to learn. Autistic children are drilled with them constantly. My daughter is starting kindergarten in September, and I was given a long list of skills that she should have in order to be ready for kindergarten. But what I see from some of this year’s kindergartners doesn’t exactly jibe with the supposed ‘social skills’ on the list. Instead I hear stories about our neighbor whose ‘friends’ were sitting on her and refused to stop even after she asked them to and said she didn’t like that. When she started crying and wiping her nose with her hand, they went to her mom on their way off the bus to tattle that she was picking her nose and eating her boogers. Her mom has often commented that the little girl was the sweetest, happiest child before she went to school.

I look at my own daughter and know that she is not the sort of kid who would be that mean spirited. Hopefully school won’t corrupt her.

Then there’s Gus. He’s another of those kind-hearted, laid-back kind of kid. He’s got an easy smile and he wouldn’t harm a soul intentionally. Yet he’s had kids even younger than him call him names. Even now I hear snippets of stories – little kindergarten girls in the schoolyard telling him to “go away” when he tries to use the social skills he’s made to learn at school. No wonder he’s started picking up words like ‘dork’ and ‘stupid.’ We thought it was from TV, but I think it’s the kids at school.

I have to wonder – who has the better social skills here?

I hope Alex Barton finds a better, more accepting school. He doesn’t need to be around those kids who are being taught that mean is socially acceptable.

Here's the Palm Beach Post article from last Friday, and apparently the teacher has been removed from class during the investigation.

Here’s the link to the St. Lucie school board if you want to voice your displeasure about this outrageous injustice.

Promising, so far

The report from Gus's teacher was pretty good at the end of day two. He had a good morning but needed more redirection in the afternoon. I was concerned that she'd be less than objective and gloss over negative behavior out of a desire to not have me give up the medication trial too soon. I should really trust her more by now, but I'm not a trusting sort by nature, so I just have to work within my own limitations.

I didn't notice anything before he left for school, but in the afternoon he had stayed awake on the bus as usual. The biggest thing was that he was much calmer than he usually is. He wanted to write a story for my sister who was coming to visit and he sat down several times to watch television. He usually races back and forth through the room, crashing into the doors. He was still hyper, but it was definitely a subdued hyper. I had to laugh at the look on my sister's face when I pointed out, "this is calm."

I'm still somewhat peeved about the meds, but perhaps I'll get over it in time, if we see a real improvement in Gus's ability to control his impulses and focus at least in school. I must keep reminding myself - this isn't about me; it's about what will help him to learn and function safely in the world.

Straddling that Yellow Line in the Middle of the Road

I haven’t made a post in a while because I’ve been doing lots of reading, probably too much, and thinking. I seem to be at a sort of crossroads. But maybe I’m really not – I’m not entirely sure what to think anymore.

I went to a documentary premier a couple of weeks ago, followed by a panel of biomedical intervention specialists: a couple of DAN! Doctors, a homo-toxicologist, a holistic nutritionist and a reporter, David Kirby, author of Evidence of Harm. The movie being screened was entitled Autism Yesterday, and it profiled five families who had ‘recovered’ their children of autism with the use of biomedical interventions.

I was a bit skeptical when I first heard about the screening and panel; I almost blew it off. But I figured it wouldn’t hurt to listen, so I accompanied a friend, a dietician. I wasn’t exactly off base in my skepticism. Each family showed video of their children having meltdowns, head banging, toe-walking, inability to speak, the typical behaviors associated with autism. And then miraculously following either special diets or chelation or some other combination of biomedical treatments, they proclaimed their children recovered and then showed them talking and behaving almost typically. So here’s my first problem: It they are almost typical, and still need the myriad therapies, how can they be called recovered? They were greatly improved, skillwise, and seemingly happy kids, but I don’t think that can honestly be touted as a full recovery.

There was a lot of talk about mercury and vaccinations – more information than I have been able to process truthfully. I bought David Kirby’s book because I wanted to read what he had to say. It’s quite disturbing. I haven’t finished it yet, but so far every indication is that, whether or not it caused the rise in autism diagnoses, an awful lot of kids seem to have been given way more mercury, in the form of thimerisol, in their first year of life during the late 90’s. This disturbs me, yes. But then again, I’m not sure that I want to go running to our old pediatrician to find out exactly how much mercury was pumped into Gus.

My husband and I discussed some of these theories and determined that they don’t seem to apply to Gus – none of them. No genetic abnormalities were found in three rounds of genetic testing, which I stopped because my son is not a pin cushion. He was tested for heavy metals and his numbers were not alarmingly high, so I’m not really inclined to chelate him on the possibility that there might be mercury hiding out in his body somewhere. And he has never shown the severe gastric distress that most of the activist parents describe in their children, so I see no reason to remove gluten from his diet. I’m even wondering about the benefits of our non-dairy existence and may ease up on the ban slightly. Why? Because the kids like their cheese.

All the stuff I’ve read from that side of the debate, aside from giving me nightmares (literally) led me to seek out counter-arguments. So there’s this other school of thought that believes autistics just need acceptance and to not be treated like damaged goods. I agree with that. They don’t seem to buy into the mercury/vaccine theories or the biomedical theories…I can understand that as well. Nothing, including any genetic defect, seems to fit my Gus. I know he wasn’t ‘made autistic’ by vaccines, although they may have exacerbated what was already present. The day he was born he was different and sensitive. He just…was.

Where I start to diverge from the more ‘positive’ camp of thinkers is that while I see my son as a blessing, I don’t see his autism as a necessary blessing…or a curse. It is what it is, I guess. It’s for damned sure not all roses. I’ve never been one to insist that the glass is half full; there is half the water’s capacity and I can’t be bothered to judge beyond that most times. Sometimes, life with an autistic child, it’s hard, but the rest of our life - bills, work, family - is also hard at times too. As a matter of fact, Gus is often easier to raise than his five-year-old, typically-developed (so far – I’m waiting for a teacher to tell me she has motor skills issues because why wouldn’t she with an autistic brother) sister. This difference has little or nothing to do with his autism; he’s just an easy-going kid who likes peace around him. But I worry more about bills than I do about his autism, and I get more upset about family matters than I do about his behaviors.

I’ve started trying to remove environmental toxins from the house. Not because he’s autistic, but because he’s got eczema. If there are ingredients in the laundry detergent known to cause irritation, maybe removing them will make this summer a bit less ‘steroid-y’ trying to cope with the flare-ups. By the way, the dairy removal also had a little to do with his physical health and sensitivities, not just the mental ones.

When I tell Gus to stop humming while he’s eating in a restaurant, it’s not because I’m ashamed or that people will look at him funny, although I certainly don’t appreciate when they do. But I was raised to have consideration for the people around me. MM isn’t allowed to crawl under the table or climb on the seats either – because it’s annoying and inconsiderate to the people around us. Should I expect that the world should just suck up whatever my kids dish out because they’re kids or because one of them is autistic? That’s craziness. I don’t care if my son runs through the house (except when it starts making me dizzy), but he has to know that he can’t do it in school. Why is this an unacceptable expectation or trying to make him something he’s not?

I don’t need my children to be perfect or anyone’s version of ‘normal,’ I just want them to be healthy and happy and compassionate. I want them to be able to navigate the world safely and independently because realistically I won’t be around forever. But I have no intention of tormenting Gus with treatments or medications; he’s not sick, just different and learning every day.

I doubt that I’ve made a definitive point here. This is just some of what’s jumbled up in my brain, trying to find an escape. Hopefully tonight there will be no nightmares.

So much going on

Gus just turned seven this week. And even beyond that lie has been...eventful. We went to the autism fair, and while I didn't learn much in the way of new information, I did see some of his old teachers/therapists and that was wonderful!

I have been gathering a great deal of information from other sources mostly about dietary changes, nutritional supplementation, yeast, yada yada. It's too much to go into until I can process it all, but I'm working on doing just that. Processing.

I've started experimenting with probiotics a little - just soy yogurt and now acidophilus. There's a panel that I will be attending tomorrow of therapists, DAN doctors and nutritionists regarding the biomedical take on autism. Apparently the buzz these days (at least in that field) is that autism, ADHD, asthma and allergies are all treatable and reversible with diet, supplementation and detox. I don't know how comfortable I am with some of the detox methods, but I feel like I have to at least be informed.

The other issue I find myself having is that I wonder where one draws the line between trying to help your child and trying to 'fix' your child. Where does acceptance come into play? How much unpleasantness do these children have to experience all in the name of making them 'better?'

Speaking of unpleasantness, I will be attempting to have Gus's bottom from teeth pulled on Monday. Hopefully, nitrous oxide will help keep him calm enough. The permanent teeth are fully in and growing into (toward the tongue) his mouth. If we wait too long, they may not come forward on their own. I am not looking forward to this, but it seems necessary.

We've tried a couple of karate classes in the past 2 weeks and Gus did better than expected. I don't know if we'll sign him up for the year - that will be determined after a few more classes. But he seems to like it.

So that's where we've been. Hope all is well with you & thanks for reading!

World Autism Awareness Day

I learned from Gus's teacher that CNN will be running programming all day tomorrow, April 2nd, dealing with Autism Awareness. I checked some of the features on their site today and it seems like it would be worth checking in with at some point. Just thought I'd share.

Autism Information Fair - Westchester County, NY

A good friend of mine emailed this to me, so I thought I'd share:

Navigating the Spectrum and The Westchester County Department of Community
Mental Health are proud to sponsor The Second Annual Autism Information Fair
Sunday April 6th from 11 am to 4 pm
Westchester County Center
198 Central Avenue - White Plains, NY
Parents, therapists, educators, health care professionals, school
administrators and anyone who cares about a child on the spectrum are invited to
join us for a day of education and empowerment. Connect with families affected
by ASDs and network with knowledgeable and encouraging professionals. Learn
about Interventions and Services available for all ages, from toddlers to
adults. Visit Over 40 Scheduled Information Stations Including Applied Behavior
Analysis - Relationship Development Intervention - DIR and Floortime TEACCH -
Occupational Therapy & Sensory Integration - Speech & Language Pathology
Physical Therapy - Medical Interventions - Nutritional & Biomedical
Interventions Special Education Law & Advocacy - Assessments &
Evaluations - Family Resources Literacy Development - Math Development - Post
Secondary Educational Options Self-Injurious Behavior Management - Family
Support Services - Recreational Programs Respite Services - Social Skills
Programs - Transitional Services - Vocational Training Residential Options -
Family Management - Auditory Therapies - Vision Therapy Chiropractic - Cranio
Sacral Therapy - Interactive Metronome - Creative Arts Therapies Research
Studies - Complementary & Alternative Treatments - Plus Many More...

Breakout Lecture Schedule
Toddlers and Preschoolers School Age Children Adolescents & Young
Adults
11:30 - 12:30 1:00 - 2:00 2:30 - 3:30-

Getting a Diagnosis - It's Never Too Late to - Puberty and Sexuality-
Securing Services Try Something Different - Transitional Services-
Multidisciplinary Approaches - Friends and Fitting In - Vocational
Training-
Therapeutic Options - Peer Pressure & Bullies - Residential Options-
Educational Advocacy

FREE ADMISSION - FAMILIES WELCOME FUN & ATTRACTIONS FOR CHILDREN
BOUNCERS - BALL POOL - BIG APPLE CIRCUS CLOWNS

Navigating the Spectrum - www.navigatingthespectrum.org -
(914) 826-5300
Dept Community Mental Health - www.westchestergov.com/mentalhealth
- (914) 995-5220