The Brookston Family Blog
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This morning’s episode of Elmo’s World on Sesame Street was all about telephones. When they showed a scene with a spilt screen of a little girl phoning her grandmother, Porter immediately wanted to call Grandpa. So I dialed the number and handed him the phone. He told Grandpa about the tower and bridge and space station he’s been reading about and wants to add to his plethora of space toys. They talked for a few minutes, with Porter holding a fairly lengthy conversation. This would have been jaw-droppingly unthinkable as recently as two or three months ago. So that was very cool to watch, but later in the morning he wanted to call Grandpa again, this time out of the blue.

He was playing with a seaplane and wanted to take a bath so he could land his plane on the water. I offered the sink but he said that wouldn’t do. The plane had to land on the ocean, he said. When I tried to ask why if the tub could be the ocean, why couldn’t the sink be the ocean, too, I was soundly renounced. Apparently there is a big difference. Anyway, he was sitting at the kitchen table with me. In between us on the table was the cordless phone. He noticed it and asked if we could call Grandpa. So just for a laugh, I asked him if he wanted to dial the phone. He said “yes” so I showed him what to do and then slowly told him Grandpa’s number, one digit at a time while he searched on the phone and pushed each button in turn. He got it right on the first try and he and Grandpa had a conversation about water and seaplanes that on his end must have been just baffling. I eventually was able to explain it all to Lyman and fill in the missing details. This is a great new trend, using ther telephone. Wow.

Porter dialing the phone to call Grandpa.

Pushing one button at a time.

Then another.

“Hello Grandpa? We need water.”

“For my plane, of course. Why do you ask?“

Porter was off yesterday for Presidents’ Day, and in fact he’s off this whole week because of the mid-winter break. Does anybody else remember a mid-winter break from school? I remember spring break and Christmas break, but what the f%$#&@k is a mid-winter break? Now I don’t mind per se if the kids — and by extension the teachers — get more time off here and there, especially since I have at least two family members who are teachers along with several friends. I know teachers are overworked and underpaid. But every time we have one of these breaks it totally throws off Porter’s sense of routine and he’s messed up by it for anywhere from a few days to several weeks, depending upon the length of the break. For example, it took him several weeks to readjust himself after over two weeks of vacation over the holidays. (BTW, I’ve decided to ban the Xmas word just to piss off Bill O’Reilly and his ilk.) So this week off comes just six weeks after returning to school at the beginning of the year. So let’s say it took him three weeks to get back in the swing of things, that means he’s had only three weeks in which he was comfortable in his routine out of the last ten weeks. And I know Porter’s not typical insofar as his routine is more important to him than the average kid, but that just seems a tad ridiculous to me. Oh, well. There’s not really anything I can do about it apart from complain. I’m sure it bothers me more than him since I bear the brunt of his mood swings that result from being out of sorts when his routine is thrown out of whack.

So all morning when I tried to prepare Porter to go to Ms. Liza’s (Montessori) he complained that he did not want to go to Ms. Liza’s today. “Tomorrow,” he’d say, beliveing it to be Monday most likely. And when we got there he was even more upset and even cried when I left. As I knew he would, when I picked him up, he’d had a great time and loads of fun but I still had to go through the worst of it with him, which quite frankly can be hard on me.

Not happy to be at Ms. Liza’s.

Porter had another great session of occupational therapy yesterday and his therapist was telling me that his proprioceptive responses have dramatically improved over the past couple of weeks. We’ve noticed the same thing, as well. What this means is that he’s learning to better regulate his own body so that when he gets worked up, riled up, overexcited, wired — whatever you want to call it — that he can now come back to normal on his own without a tantrum or intervention. I’m sure there will be relapses from time to time, but this is still great news and will hopefully allow him to make even greater strides in other areas. Today, he went for a ride on the swing under his own power.

Swingtime for No. 32.

Up we go.

“Wow, look how far up here we are!”

“I’m taller than Daddy!“

Now I realize that Mercury, the Greek god, is often portrayed wearing winged shoes. But I think the sneaker companies may have gone a little bit too far this time. Ruthanne, my mother-in-law, showed me one of the cover stories from Tuesday’s Press Democrat, her local newspaper. In the article by Bleys W. Rose, entitled “Batteries, old TVs no longer can be tossed in trash” she reports that a fairly large number of new items have been identified by the State of California as toxic substances which may no longer be thrown away in household garbage cans. In the course of listing some of the newly banned items, the author off-handedly remarks that the list includes “a variety of mercury-containing items, such as children’s shoes with flashing lights.” [emphasis mine.] Let’s linger on this a moment longer. Mercury, the second most toxic substance on the Earth (No. 1 is plutonium) which is — at least in my opinion, among others — a primary cause of the autism epidemic, as well as a huge number of other maladies, is being used in children’s sneakers?!? I must confess I’ve never really liked those flashing sneakers and so we’ve never bought any for Porter, and I’m certainly feeling better about that decision. But what the f%$#@k! Why are there no warning labels? More importantly, what were they thinking? Considering just how terrible mercury is and has the potential to be, why do companies continue to keep using it both in the manufacturing process or as an ingredient in the finished product? It just seems incredibly irresponsible. I know profit is king, but why are so many people so dead set on killing us for the sake of saving a penny. I mean the companies making these decisions are employing people, aren’t they? So it’s human beings making these deadly decisions, isn’t it? I’m really starting to wonder.

As far as I can tell, everybody on Porter’s school bus is going to the same special county school that he attends. This means that all of those kids are dealing with some sort of developmental issue. And the number of different problems is, one presumes, large and wide in scope. I mention this only insofar as it makes it difficult to know the specific predicament in which each of the other kids on Porter’s bus find themselves.

One of Porter’s biggest issues is social. Lately, he is finally starting to make significant strides in his social dealings, especially with kids his age, which is where the difficulty is most keenly felt. Over the last few weeks we’ve also noticed that his language seems to be reaching another plateau (one in which he can now ask “what” and even the occasional “why” questions). This seems to imply that more complicated understanding is now possible. And how that’s manifesting itself in Porter is greater confidence which in turn seems to have made him more willing to initiate conversations and play with kids he doesn’t know at the park and other similar public settings.

Last week on the school bus, Porter started up a conversation with the boy who sits across the aisle from him. That boy looks a little older than Porter but he is, at least he seems to be in the very brief time I see him, less verbal than Porter. The other boy had a Gordon train with him and Porter walked right up to him and asked him about the train, adding that he had Henry (a green steam engine in the Thomas pantheon) with him and showed it to the boy. I couldn’t hear his response but Porter kept talking to him as he was put in his seat and strapped down. Every day since that one, Porter has talked to the boy (let’s call him Buster just so I can stop calling him the boy) in some fashion. And little by little, Buster has started to talk back, a little more each day. It’s as if I’m watching Porter develop a new friendship before my eyes. Today, Porter had Gordon with him, albeit a different Gordon than usual (it was the motorized Gordon that runs on the blue track from Tomy). So when he climbed the stairs to the bus he again began talking to Buster about Gordon. I couldn’t hear exactly what they were talking about, but the important thing is that the exchange was longer than before and presumably more sophisticated (at least as sophisticaed as four-year olds can be). It will be very interesting to see how this unfolds. Score one for Gordon and Thomas the Tank Engine.

Porter waiting with Gordon and an Express Coach to get on the bus this morning.

Yesterday before we went to the park, Porter was tossing around a three-pack of Wiggles underwear we’d bought at the mall the day before. They were a good size and the packaging was loose enough that he could easily grab onto them. He threw them near me and I caught them, which sent Porter into peels of laughter. He then asked me to throw it back to him, which I did. Much to my surprise, he caught them. He threw them back to me and when I repeated my throw to him, he caught them again.

Now before we get too far along in this story, a couple of digressions are in order. First, I’m not sure when the hand and eye coordination is supposed to kick in for kids to be able to catch and throw with any accuracy or consistency. As a result, I’ve never know where Porter stood on the continuum for this skill set or if his autism was any impediment. I’ve tried over the years to play catch with him, but with mixed results at best. Some days he’d seem to grasp the idea while others he’d stand there blankly as the ball hit his chest and fell to the ground at his feet. So I must confess I despaired that he might not “get it” so to speak. Of course, part of this is why is it so important to me that he catch a ball? Naturally, that’s a little complicated and also very simple.

My stepfather never played catch we me as a child. Not once. I don’t mean it was infrequent, I mean we never ever threw a ball in the back yard. I got not one iota of sports training from him. So what, you may ask. Most of you have seen me throw and catch a ball in the present or at least at some point in my adulthood. And I’m not too embarrasing at it. As a teen, I played pickup football and basketball, golf and tennis, ping-pong and handball, raquetball and even softball so what’s the big deal? True enough, I got a smidgeon of natural athletic ability from my biological father, who was all-state at basketball and beat me at badminton every time we played. And I generally became fairly adept at picking up new games that require hand/eye coordination so today I can hold my own at most sports.

The problem, however, was little league, that age old rite of passage for every red-blooded American boy. And I was no different back then. I wanted to be the star baseball player as much as the next kid. Trouble was, I knew virtually nothing about how to play baseball with the exception of what few facts I could glean watching baseball on television and reading books about it. And I have to tell you, there’s not a lot of practical knowledge to be had that way. But I went out for little league anyway and with high hopes no less. Everybody made the team, of course, but in those days there were no rules about everybody playing so my actual time on the field was practically nil. Our coach lived in the neighborhood and was the father of two brothers, one my age and one a year older. Naturally, his sons played every game. So did the other kids whose fathers taught them how to throw, catch and hit a baseball. Even then, I knew the disadvantage I had. So the other kids teased me about my lack of skill. It hurt and pissed me off, but kids are cruel. I understand (and understood) that. Sure it bothered me, but I don’t hold a grudge about it since they didn’t know any better. It’s not like I was never cruel to other kids so that part was just a natural part of growing up and I weathered it as best I could. But the coach was another story. For him I wish a separate wing of hell be opened in his honor. Because when the other kids made fun of me, what did he do? Did he come to my rescue and tell them stop, instill us all with a sense of team spirit? Did he take me aside and show me the fundamentals of the game that I was so obviously lacking? Did he have better players work with me so I might improve and so the whole team might be more competitive? Nope, his idea of being a little league coach was to also openly mock me thereby encouraging the others that it was open season on me. I think he was trying to make me quit. But he had no idea how stubborn I could be. I spent four years as a benchwarmer, refusing to give him the satisfaction, and enduring what I can only describe with nostalgia as my summers of living hell and torture. The fact that I’m still bitter about it today should convey some idea how it scarred me. Perhaps now you’ll also understand why it’s so important that Porter be able to throw and catch a ball. I don’t want Porter to share a similar fate. So back to the present.

So Porter was very excited about playing catch. He stood on the coffee table and we threw the package back and forth. The first time we did this, he caught four in a row. The second time, he caught eight in a row. He did ten a few times and his personal best was thirteen! Some he caught in his chest by pulling them in like a football while others he snatched from the air in his hands. It was so exciting to watch, especially the thrill on his face with each subsequent successful catch. He would have happily played catch with me all day. And while he’s caught things before, it always seemed more accidental. But yesterday was different. He really seemed to be watching the ball as it came toward him and maneuvering his hands to be in a position to catch it. And that was the difference. He was paying attention. It was soooo cool. I’m tearing up as I remember it. Man, this parenting stuff is great. All the tantrums and sleepless nights and struggles seem ultimately worthwhile when you witness those little, yet huge, milestones. I wouldn’t trade that for anything.

I just got a call from Porter’s teacher, Liz, that Porter had some exciting news he wanted to tell me. So I waited while he came to the phone. As soon as I said hello to him, he blurted out “I went poo-poo in the potty!” He seemed very excited about his accomplishment and, needless to say, so was I. That’s his second success this week and his teacher suggested sending him to school in cloth underwear rather than the pull-ups. It looks like we may finally be entering a very messy, but ultimately rewarding, phase. This is also great news for another reason. He used the phone to initiate a conversation. According to Liz, he wanted to call me and tell me. I suspect he wanted to tell me, and Liz suggested using the phone. But no matter, it was still a milestone.

We went over to Porter’s school today to visit a new class they’re proposing for him. His friend T.J. recently moved to this school so one benefit is that he already knows at least one of the kids in the class, which should ease the transition. Apparently, the new class will also challenge him more in social settings and with the use of his language, especially his pragmatics. It looks a lot like his old class. According to his new teacher, they do a lot of the same things but with an emphasis on independence and solving problems in real time rather than in therapy sessions. After talking it over this morning, Sarah and I have decided to have him start transitioning into the new class. We believe it will be good for him to continue building his relationship with his new best friend — a first — and also the idea of challenging him to do more himself seems like a sound one.

Alice visiting Porter’s new classroom. (That’s T.J. on the very left of the photo.)

Sarah got an e-mail from the mother of an autistic boy in Arizona. After reading our blog, she felt compelled to write Sarah and tell her a little about her son. She also expressed her thanks to us for setting up the blog and added that she believes our blog helps other parents of autistic children.

What a sweet letter. It’s very gratifying that my ramblings might make even a small difference to another person’s life. It makes it all worthwhile. We wish her and her family all the best.

I spoke with Porter’s classmate’s mom today and we’ve scheduled a playdate at the Bay Area Discovery Museum for this Friday. I figured starting a playdate on neutral ground was probably best. So T.J. and Porter will get their first chance to play together outside of school. I’m looking forward to seeing how it goes. Look for a report late Friday.

Wow, I’ve just read the most amazing indictment of the autism community. It was simply amazing. I was seriously blown away. If you care about this issue, you owe it to yourself to read the flip side of the autism organization coin. It’s a website called Getting the Truth Out, which is one adult autistic woman’s counterpoint to the American Autism Society’s Getting the Word Out, which is billed as awareness education. It’s a long read, but very, very worthwhile. It will (or at least should) open your eyes to many of the problems with the way these organization operate and the medical community treats the autistic. This website brought up things that Sarah and I have long thought problematic with the various disparate organizations that make up the mainstream autism community. This may be one of the most outstanding pieces of autism advocacy we’ve ever read.

Yeah! Porter got his first official invitation for a playdate. I got a letter in Porter’s notebook when he came home from school today. It was from the mother of one his classmates, T.J., inviting us to get the two of them together for a playdate. We ran into T.J. and his Mom at Safeway a couple of weeks ago and Porter couldn’t stop talking about it. Days later, when we visited the grocery store again, he was still asking where T.J. was. Then we saw them again at school on Halloween. So I gave her a call and we’re going to get the boys together the week after Thanksgiving, either at their place or the Bay Area Discovery Museum. This is very exciting to me, and it will be very interesting to see how they do together outside of school.

We got the following press release this morning from the National Autism Association, a group Sarah and I belong to. I get missives from them almost every day but thought this one was worthwhile to share. It’s about the new legislation pending to finally fund research into autism, but when I read it it seemed like it didn’t go nearly far enough and apparently the NAA thought the same thing.

Dear National Autism Association Members and Friends:

As you know, the Combating Autism Act of 2005 was first presented to us in July of this year for our review. After carefully analyzing the draft we were given, we were unable to support the bill as it was written. Our primary concerns were as follows:

1. No mention of vaccines or vaccine components, as an area of study or in any other context, was contained in the bill.
2. Adequate oversight of government involvement in steering research and management of data was not incorporated.
3. Date of 2008 to begin research on environmental factors in the development of autism was delaying what should be a main priority in the research agenda.
4. Funding for biomedical research was too low.

After several discussions among our board members and with others in the autism community, we submitted to the other groups assessing the bill an alternate version that included our suggestions. Following several teleconferences among our board members working on the bill, and further discussions with other organizations within our community, a new version of the Combating Autism Act has been written. In its present form, we believe the bill is now one we can support.

To address our first concern regarding the absence of language including vaccines, the bill has been revised to state, under Section 499B:

(b) Autism Centers of Excellence

(1) IN GENERAL- In carrying out subsection (a)(1), the Director of NIH shall award grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding research on autism.

(2) RESEARCH- Each center of excellence that receives funding under paragraph (1) shall conduct basic and clinical research into autism. Such research—

(A) shall be conducted in the fields of developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, endocrinology, gastroenterology, and toxicology; and

(B) should include–

(i) investigations into the cause, diagnosis, early detection, prevention, control, treatment, and cure of autism;

(ii) research on high-risk infant siblings; and

(iii) research on a broad array of environmental triggers which may have a possible role in autism, including but not limited to vaccines, other biological and pharmaceutical products, and their components (including preservatives).

Our second concern regarding inadequate oversight has now been addressed by the following three mechanisms that we believe will allow for greater transparency and integrity:

1. Expanded IACC (Interagency Autism Coordinating Committee), a federal committee that meets twice per year to review and revise the Autism Research Roadmap. A minimum of 6 members, or one-third of the membership, must be from the autism community. Up until now, this membership has been discretionary, but passage of the Combating Autism Act will require that these positions from within the autism community be filled.
2. Formation of an Autism Advisory Board, a panel comprised of scientists and members of autism advocacy groups formed for the purpose of peer review of research grants.
3. Establishment of a Congressionally Mandated Medical Research Program, which requires public participation in research funding decisions.

The third concern of delaying crucial environmental research until 2008 has been addressed by moving the date up to coincide with passage of the bill, effective in 2006.

Lastly, the funding for all research, including biomedical that we believe will provide the most meaningful answers for our children, has increased to over a billion dollars. While this figure includes all areas of research, the oversight mechanisms listed above will allow those in the autism advocacy community, including those emphasizing the critical need to address neurotoxic exposures, to have a hand in allocating funds.

Although this bill may not fully address the concerns of many in the autism community, we believe it to be a first step among many that will be necessary to meet the tremendous needs of individuals diagnosed with autism and related neurological disorders.

In addition to lending our support to this legislation, we are urging Congress to declare a National Emergency regarding the autism epidemic, and to take the appropriate steps to address this epidemic that claims 100 children each day.

To adequately confront this national emergency, it is imperative that an official investigation of government malfeasance regarding the use of the mercury-based vaccine preservative thimerosal be set in motion immediately with Congressional or Senate hearings. This step must be taken to ensure that no stone be left unturned in determining the affects this exposure to mercury has had upon nearly an entire generation of American children, and to determine what role our regulatory agencies may have played in allowing such widespread and prolonged exposures to occur.

Furthermore, we are requesting a full investigation of the Institute of Medicine’s handling of the clinical research regarding thimerosal its Immunization Safety Committee members were entrusted with reviewing in 2004. We are asking that a new committee be convened to evaluate the research ignored by the IOM in 2004, along with the relevant research that has been published since the former committee adjourned.

The measure of a civilized society is the manner in which it treats its most vulnerable populations. If action is not taken now, this plague will only increase and so will the cost to our society.

The National Autism Association is prepared to support this legislation, and after its enactment, will closely monitor the policies and programs it establishes.

There was an article in the San Francisco Chronicle today about a study done at Stanford that appears to reveal that children who take music lessons are also better readers because of how learning music benefits the language skills. What stood out for me, specifically, was that they indicated it was especially helpful for kids “who aren’t good at rapid auditory processing,” which is Porter’s problem in a nutshell. I’ve always wanted him to take piano lessons but I had figured it would have to wait. But if it may help his language development, as this new study cautiously seems to say, then perhaps now is the time for him to Shine.

My editor at the Marin I.J. sent me a press release for a book, My Brother’s Keeper, written by an older brother (he was six when he wrote it with his mother’s help) about his younger brother’s battle with autism. It sounds like a very strong southern woman who’s fighting her own battles with prejudice and ignorance and I give her credit for not giving up. It looks the book may be self-published, the press release was not the most professional looking I’ve seen but given the subject matter, I hope they do well with it and reach a lot of people.

These are a few excerpts from the press release I found interesting:

One of the saddest things I can remember is taking Jace and Justin to the local fair. Jace is a little taller than Justin so they were letting him on rides and not Justin. Justin was crying tears running frustrated to the teeth. Then we find a ride that both can ride and yahoo it’s the bumper cars. I put them in and a kid working there comes over and says, “Hey mam, he is not big enough to drive the car he has to sit in the passenger side.” I start to pull Justin out and he is crying and screaming, “No momma please let me ride please momma please”. We attract a huge crowd of fair workers and I am trying to explain he is autistic he does not understand. One fair worker about 17 looked me in the eye and said, “That’s why these rides are not for retarded people.”

It’s very heartbreaking to experience people that way.

Then on Justin’s second day at the big boy school with all the “normal” kids and a little boy was crowding him in the lunch line. I am sure he did not mean too but he kept bumping into Justin. Justin turned around and slapped him. I made it into the lunchroom just in time to hear the regular teacher say “that is why we do not mix special ed kids with our kids. They just do not fit in. They will always be special ed kids. They’ll never be normal.”

This was pretty devastating to hear from a teacher.

Sometimes, bad news comes from people you think you know - Family. This year we found out, after the fact, that my one of the aunts in the family took all the nieces and nephews to see Santa all but Justin. When we asked her why she said “it just was not fair to let Justin ruin everyone’s trip by pitching a fit”. We later took him and his brothers to see Santa and he did fine.

When things like this happen it is just about all the sadness I can handle for one day.

The thing that breaks your heart the most was going to day care and seeing that your child has no friends and he just wants to be left alone, which is actually the very worst thing you can do for him.

The scariest thing that has ever happened is when we were all at home one Sunday night. The kids were playing video games we were watching TV, which is so rare at my house. The phone rings. It is my neighbor calling to let me know that Justin is at her house. He is safe and sound but got up and walked out of the house without us knowing he’d even left.

Autistic kids have no sense of danger. One of my friend’s sons is 20 and has autism but still will walk into traffic.

They also have a very high tolerance level for pain. Justin fell on a broken glass and cut his leg at school but no one knew it until they saw the blood. He didn’t cry and didn’t let anyone know anything had happened or was wrong.. His most trying times are just normal for everyone else times. Just going out to eat was a major ordeal. Bed time is another huge hurdle.

For some reason most autistic children function on about 4 hours of sleep a night. If I can get him to sleep Justin will sleep 6 or 7 hours but he wants to stay up until 2 or 3 in the morning. This is not very conducive to going to school.

It is not all bad though he does have his funny moments.

We took him to Rome Braves Autism awareness night and he told Dean White he was going to tell on him. Dean is one of the Braves best players. He started to laugh and said “Tell on Me?” Dean was autographing baseballs.

Justin said, “We all know you are supposed to write on paper not toys!”