Visit to the Dentist

Took Jackson to the dentist today. I took him a couple of weeks ago for the first visit, to a special needs clinic conveniently located in the building in which his school is located, and the doctor stuck his finger in his mouth for maybe 5 seconds, told me that was enough for the first visit, and I could come back in two weeks for a real cleaning. Eighty-five dollars.

Today, Jackson was in a great mood. The past week was a bit tough, as Jackson was pretty consistently in the type of mood he gets into where he wants to oppose everything. If I take him on the train, he wants the bus, if we are going to school, he wants to go to the gym, if I say black, he wants white …. Not unusual behavior for Jackson, except that it was pretty consistent all week which makes for a grueling existence.

So today we are waiting for the bus and I try to get him to say “Don’t scare the squirrel”. Two weeks or so ago we were walking down the street with Jack on my shoulders and there was a squirrel on the sidewalk so I stomped at him to scare him away. Jack tried to tell me “Don’t scare the squirrel” but he has trouble with the /s/ and /k/ sounds, particularly when they are together, so it came out “Don’t fair the furl”, which I laughed at, and he laughed too, when I repeated it back to him. Its funny that he can laugh at himself for his speech difficulties, and I think informative too – its obvious that he knows what he wants to say and knows how it should sound, he just can’t get his mouth to form the right sounds sometimes.

So at the bus stop he is in a fantastic mood and jumping around and looking for the bus to come and I get him to say “scare” by getting him to say the letter Q (the one K sound that he can consistently make correctly), and then “care” and then “scare”, and he gets pretty close. And then I try “Q” again, then “quirrel” and then squirrel, and he doesn’t do it so well. So then I say “Don’t scare the squirrel” for him to repeat, and he looks right in my eyes and says “Don’t scare the bunny!” and laughs. He was just sick of working at it, but in such a good mood that he made a joke about it. Sometimes he is really fun to be with, sometimes I just wish it was more often.

On the bus he is busy narrating the world passing by, announcing the taxi, the mixer (cement truck) and the big orange truck that pass by. Then some guy gets on the bus and starts walking down the aisle and sits about three seats in front of us (all three of us facing sideways on the bus). He is very big, overweight, and has a long white beard. Jack is fascinated. He sticks out his finger, points right at him, and says “Hey!, Look at that guy!”. That guy might look a little like santa claus, but his demeanor is anything but, and he is obviously annoyed. All I can do is laugh out loud and tell Jack not to point. Ironic, just about 12 months ago we were all doing everything we could to teach Jack to point and now, for the first time, I was telling him not to.

Now we are at the second visit to the dentist, and Jack is fully prepared. In the waiting room, I’ve stuck my finger in his mouth a couple of times to show him what the dentist would do, and explained that this time the dentist would also brush his teeth. Jack was not at all happy to go back into the same examination room, but he did it with suprisingly little resistance. The first time he had sat in my lap, but this time he wanted to sit all alone in the big chair. And he hated the polishing tool that the dentist used on his teeth (what a sensory nightmare!), but he kept fighting his reflex reaction to shut his mouth. His would jerk away, and then he would voluntarily turn it back so the dentist could continue. Finally, when he moved his head the wrong way, the polishing tool accidentally reopened a cut he had on his lip from last week. There was quite a bit of blood, and I think a little bit of pain, it was a little bit too much for Jackson and he sort of broke down. But his crying was not screaming – it was more like he was sad that he couldn’t handle it anymore but no panic screaming or insistence on leaving. He gave me big hug for a while, calmed himself down, and we did the fluoride treatment while he was sitting on my lap. 10 minutes later, I was dropping him off at school, and he was completely over any trauma. Really a good trip to the dentist. Attaboy Jackson.

Subways with Jack

Jack and I tack the subway a lot. In September, we made the tough choice to go to a new therapy gym that involves a subway ride with a change of trains, both there and back. It was a brand new, much bigger gym, and an opportunity to get time with a highly recommended OT therapist due to the fact that it was a new space.
At first, the subway was difficult for Jack – All the movement, trains coming in both directions, people rushing every which way, a real sensory nightmare – there were times when I had to wait at the top of the stairs and right for the right train to pull in before rushing downstairs and running on, and I would literally have to bearhug Jack to keep him under control.
After several trips, always using the same stairs, getting on the same car, and using the same path to switch trains, Jack started getting used to things and it got easier. He was still uncomfortable, and still held on to me tight, but he could comfort himself with the knowledge of the routine -- where we were going, about how long it would take, and seeing trains going the other way out of the window.
As his comfort grew, it started to become more difficult to take him on the subway. He started stating a preference for trains, refusing to get on the express and instead insisting on waiting for the local, for example, or demanding to get off at a certain stop and throwing a bit of a fit when I explained we had two more stops to go. It can be difficult, as the train to the gym is at rush hour and involves crowded platforms and overcrowded trains.
The other week, I carried Jackson into the station and heard the train approaching downstairs. I knew it might cause a problem but we were late, so I rushed down the stairs and hurried onto the train with Jack in my arms with no explanation to him about what I was doing or where we were going. Predictably, Jack was pretty upset at the rushing and lack of control, and he immediately began complaining. I sat him down and he continued to whine a bit about something, I couldn’t quite understand, that sounded like dubbadubba. “What is it Jack, whats wrong?” I asked … “its Ok, we are going to the gym to see Missy …”
“Jack no want the dubbadubba”
“You don’t want the what?”
“The dubbayou” he said, pointing at the big yellow “W” by the window that named the train line.
I laughed, “what train do you want?” I asked.
“Jack wants the R” he said.
Guess he had been paying more attention than I thought, as we do take the R sometimes.
That evening on the train home, it was very crowded, and my back hurt from carrying Jack, so I put him down on the one empty seat between two strangers. Later, the seat across opened up and allowed me to sit down and observe Jack from across the train. Jack really liked it, looking up at his two new neighbors and smiling, looking out the window, and looking at me. It was great to see him so happy, and gave me a great feeling watching him as if he was all by himself.
Like anything else, when you let Jack “get away” with something once, it’s a major project trying to disallow it in the future. Now when we get on the subway Jack wants to sit in one seat and have me sit somewhere else. Jack is not yet quite an expert at the ebb and flow of subway riding, so without people on either side of him he is a threat to fall over at any sudden acceleration or deceleration and I find myself constantly jumping half out of my seat to catch him should he tumble. Haven’t been on a train with him in two weeks now …. Might be time to break his habit…

Back from North Carolina

Feb 24, 2008
Just got back from a trip to North Carolina to see my sister and her three kids, and to scout out the neighborhood for a possible move when Jack gets to kindergarten in 18 months. We talked to a great consultant, of sorts, who helps people deal with special needs school and services issues, and she will be a great contact as we get closer. We also looked at houses in both Cary and Chapel Hill. Wow, you get a lot for your money. The size and quality of the homes make me want to move out of our crappy apartment immediately and figure out Jack’s situation when we get there. Ellen would never let me do that, thankfully.

Jack got sick in bed one night with some sort of tummy bug. He spread it to Olivia, to Amanda (their 15 month old baby), to me (I was in bed all of Thursday after arriving Monday and leaving Friday), to my sister, and to Alexis (my sister’s middle child). Now that we are home, Ellen is really sick, was in bed most of yesterday afternoon and threw up a lot all night and is still in bed Sunday morning.
Coming home, we got to the Raleigh/Durham airport Friday morning to find out our flight had been cancelled and it was snowing in New York. After waiting 30 minutes in a 2 person line, the attendant began madly typing as I continually asked her what she was doing. “There,” she exclaimed happily with a fake-cheery smile, “I have you on standby on the 2:45 pm flight today! How many bags are you checking?” After explaining that I did not want to check bags for a flight I was unlikely to get onto, and finding out that the first flight she could guarantee was not until Monday, we decided to head back to my sister’s home and regroup. We ended up returning our rental car to Enterprise and renting another one from National so that we could drive it to the Newark airport (Enterprise was going to charge us by the mile). It was 9 hours on the road, about 2 hours of stops, and then we switched to our car and drove another 2 hours to our weekend home in CT, arriving at 2 a.m.
Really fun stuff, and the kind of travel idiocy that usually ticks me off. There was a time I would have stewed over the nature of airline travel – They make you wait three hours one way, with two kids running around the airport, and then cancel your flight on the return, they can bump your seat, and then they all lose money anyway. I don’t understand that business.
But you know, I consider the trip a success. We made some good contacts, got a feel for the area, and Ellen really liked it, and Olivia had a good time with her cousins. For all the bad and all the hassle, there was some good. I’ve always been pretty patient and a take-it-as-it-comes type of person, but I think Jack has taught me to roll with the sucker punches even more. His “punches” come so constantly, and yet unexpectedly, that you learn to love the good stuff and just move past the bad.

Feb 13 notes, Jack is sick

Feb 13th
Jack was sick today. I picked him up from school and he had been to the nurse and had a fever of 101 point something, and was generally lethargic. The school nurse told me that they had three confirmed cases of strep throat and one of them had presented exactly like Jack – small fever and a cough but no sore throat.
This sickness was disappointing as I was picking up Jack to take him to his first visit to a “typically developing” preschool, which we are scheduled to take him to every Wednesday and Friday from now on. I was so excited to see how he would do. It’s a great setup – the Director of the school has a special needs background and the school has a fantastic inclusion philosophy. I think its kind of a hidden secret on the upper west side for special needs kids. Moreover, Jack’s favorite play therapist, Mary, is the seit (shadow teacher) for another special needs child at the school on Mondays, Wednesdays, and Fridays, so Jack would have her presence (and attention, when necessary) to ease the transition. Mary’s mere presence is probably better for Jack than having his own seit, who would be a stranger.
I took Jack to our pediatrician and he tested negative for strep and flu (our regular doc was not in the office. The stand-in reviewed Jack’s file and I don’t think they have on record Jack’s diagnosis. Interesting.) Olivia threw up at about 1:30am (Ethiopian food?) and Jack seemed to be in pretty good spirits. He slept from about 4:30pm into the evening, on me on the bed, and then transferred to his own bed without too much trouble. He has to stay home tomorrow and hopefully will be good to go on Friday, back to his school and to the new one. More importantly, he has to be recovered for this weekend, when we take him to a friends home in New Jersey and Ellen and I get to have a 2 day “vacation” here in the city, where we have reservations Saturday night at a downtown hotel. If that gets cancelled, Ellen might have a cow. Next week we fly to North Carolina for the week. Come on Jack, get better, hang tough….

Notes from a Note to a Friend

Here are some excerpts from a note I recently sent to a friend. Saves me from having to rewrite:

Hey Moto:

Not sure how much you know / I’ve told you / you’ve heard about young Jackson. In March he was diagnosed with PDD-NOS (pervasive development disorder, not otherwise specified) which falls under the rather ominous umbrella of autistic spectrum disorders (ASD). The good news is he is a pretty mild case, the diagnosis allows us to get a lot of state-funded therapy and 5 hours per day at a special needs school that does some one on one therapy of its own, and he is making really good progress – its hard to believe he is the same kid he was 9 months ago.

This is where I typically go astray and write too much. I will get it in writing and share all the details with you at some point, but it’s a large project that I think will be cathartic for me and hopefully help somebody someday who finds themselves in a similar situation. For now, accept some generalities about Jackson:

Sensory Integration issues: Jackson can have problems when taken out his routine and faced with new surroundings, new people, and unfamiliarity. It used to be that when he went outside on a NYC street, I could not get him to look at me or interact, he was too busy trying to observe everything going on without the ability to filter out extraneous “noise” – the plane flying overhead, the dog taking a dump, the garbage truck on the next block or the streetlamp might all be found more important than the post he was about to walk into or the step off the sidewalk or the oncoming car. He is over most of that, and I take him on a rush hour subway round trip twice a week, and he now handles that with cosmopolitan savvy. He still has many issues – his shirt must be put on arms first, he has a weird thing about getting off the schoolbus in the afternoon, and a break in routine and new surrounding can still frustrate him, and he is prone to little tantrums. The difficult thing for me to have come to grips with is that his is a neurological disorder that manifests itself in bad behavior, and there is nothing willful about it. He simply gets out of sorts, can’t handle the situation, and reacts accordingly. Much the same way a kid with cerebral palsy may soil his diaper, and the use of discipline would seem silly, Jack’s behavior cannot be “corrected” through traditional means, he can merely be comforted and hopefully taught how to receive new input. Interestingly, I think Jack’s vomiting episode at the Vineyard 2006 was not a physical sickness at all, but actually a reaction to the extreme and unexpected change in surroundings, all the new people, etc. I don’t think he would have nearly so much of a problem with it today.

Motor Planning: This is the other real problem area for Jack, which is most notable in his speech articulation. He knows what he wants to say, but he is physically unable to make some sounds or to put words together sometimes. In particular, he cannot make the back-of-the-throat sounds like c, g, or k, and usually substitutes something from the front like a t or a d. Apparently, this is not uncommon, and is called “fronting”. As his vocabulary expands and he gains the ability to speak out of context (so cannot point or otherwise indicate what he is saying), it has become difficult sometimes to understand what he is trying to say, and frustrating for him and us. He is getting about 10 hours a week of 1-1 speech therapy and I believe it will be fixed, but it’s a tough process.

On the positive side, Jack is responding very well to therapy. Its odd, but he had to be taught how to play, and it is still work for him sometimes. Playdoh and paint used to be uncomfortable for him, and “pretend”, or representative play used to be nonexistent. Pretend picnics, a block representing a car (or even a small car representing a real car), dolls, or whatever were all nonexistent to him. He spent a good month or so where all he wanted to do was open and close doors in front of his face, and roll cars back and forth at eye level, consumed by the movement of the wheels. He now has all the play of a normally developing kid down cold, and our big question is whether to mainstream him into a normal nursery school next year (and lose a lot of 1-1 therapy) or move him into another special needs environment. His school right now absolutely sucks, and I refuse to discuss it, apart from the fact that 6 of the 8 kids in his class are “non-verbal” (which is exactly what he doesn’t need), and the school has steadfastly refused to switch him into a higher functioning class, despite our requests that started the very first day of school. It doesn’t hurt him to be there, but it doesn’t help, and every day is a wasted opportunity that will never be regained.

One day soon, I am sure, Jack will be considered a normally developing child with some quirks, as opposed to a highly functioning special needs child, which he would arguably be classified today. But it has been an incredibly arduous process, has put stress on Ellen and my relationship, caused me to lose touch with all but the closest friends, and taken time away from Olivia (who handles it all unbelievably well and is best friends with Jack), and I have left my job, though not officially, to take care of Jack full time, and to advocate for services, coordinate therapy and the like. Jack requires constant patience, and focus, as you have to understand the “why” of his behavior and work to avert tricky situations ahead of time. While in general it continues to suck every day, it has also changed my values and priorities and, a little bit perversely, has given me a real sense of purpose knowing I am the single person on the planet with the willingness and ability to make the changes necessary for Jack to be all that he can be. I am thinking seriously about getting a masters in special needs education and/or social work so I can more easily do something professionally in the area in a couple of years.

Hope that all is not too depressing. Jack’s progress was and is almost unbelievable, and we are comforted by the constant expressions of amazement by all of his therapists and teachers. Perhaps the most difficult part of this, as a parent, is wiping the slate clean of all your conscious and subconscious goals every parent has for their child. Social interaction will always be more work than fun for him, so he will never be the most popular or social kid, his speech may never be perfect, and he will never be a great athlete (its complicated, and I’ve left it out of this draft, but he, along with the majority of kids on the spectrum, have a quirky digestive system that makes affects their constitution and muscle tone, both of which are behind with Jackson. Coupled with his motor planning issues, the PGA Tour is even less realistic than it otherwise would be).

But you set new goals, because you have to, and you get a hell of a lot of pleasure from small accomplishments and short term goals that are met. And Jackson has become, over the last couple of months, a hell of a lot of fun to be with, with a good sense of humor (he makes his own jokes and cracks himself up), and a much more accepting demeanor compared to months ago.

Hows your ear? What?

A cold Monday

It was very cold on Monday, and that’s a busy day for Jack, I pick him up at school early, we take the bus to Happy Hour 4 Kids for an hour and a half of speech/social group, then the subway home, then speech every other Monday, then play therapy, and then the subway to and from the gym downtown.
Last Monday was really cold (13 degrees I think). The bus to happy hour is about a five block walk and I threw Jackson up on my shoulders, as I usually do. I have a conversation “game” we play that goes like this:
Me: Hey Jackson?
Jackson: Yeah?
Me: Howya doin?
Jackson: Good!

It’s a conversation we used to have in the car all of the time. At first it was just to get him to respond and talk, but as he has progressed we expand it – I get him to ask me how I am doing, or we change the answers around. So on Monday I said howyadoin, and he said good, and I said “Now Jackson, you say ‘Good! How you doin?’” so he said that and asked me and I said, “I’m doing good, but my ears are cold, are your ears cold?”.
I was waiting, curious to see what he would say, when I felt his little mittens move down my head and over my ears.
You could overanalyze this episode, and talk about inference, consideration of others, interaction and the like, but really it was just sweet!

Rants from Last August

Here is a couple of rants from a while back (August 2007). I'm feeling really good about Jack right now, and it feels perversely good to see how bad I felt then. He really goes on ups and downs. Over the Holidays, I was down, but he has had a really good month since then.
August 21, 2007
Seems like the whole day is spent trying to get vitamins into Jack. Right now he will not stay away from my fried rice, though he is not supposed to be eating it, while his waffle from this morning, laced with probiotics, an antifungal medication, and lactoflamx, “hidden” under almond butter and jelly, sits ¾ eaten after 100 verbal proddings. The lara bar, which has more antifungal (the last pill, a brutal one since it is red, has to be ground and has a strong taste, and needs to go 3 times per day) a DMSA captomer thorne pill (for chelation) and some other large white capsule I broke open (but not the zinc or magnesium, because I don’t think that will go well with the chelation pill), is also not arousing interest. Last night I took him for a walk at night to try to get him to finish his lara bar, but all he would do is stare at the street lamps in the little cement park on the corner. The light thing is getting much worse. Turn on or off a light and he comes running, stares at the light, and tells you whether you just turned it off or on. Headlights in the car, street lights, any light gets stared at now and its gotten much worse in the past couple of weeks. Doors are fading in interest, save the fridge.
He now takes about 19 pills – 3 xifaxin antifungals, 3 nutheras, 1 lactoflamx, 1 packet florastor, 2 coQmelts (eats these like candy), 1 super pro bio, 1 DMSA (MTW only), 1 methylaid, 1 tsp cod liver oil, zinc, magnesium, 1 amino dtox. Sorry, 17. Recommendation Number 15 from Dr.Hyman: Consider MeB12 shots. Yaright.

August 22, 2007
Jackson had a rough afternoon. I think he is in his terrible twos, a little late, and is used to getting what he wants when he verbalizes it, and has learned how to say no. I took him to Ballsley Park during the day to meet with Jen Girtz (OT), and he left the apartment grumpy, but appeared to be cheering up on the way there. But upon arriving, he peered warily at the lights on the poles (which were off) and was scared of them, the traffic, and just about everything else. Cried and couldn’t be consoled. Jen and I took him over to a small park on 59th West of tenth with a gymset, but he cried the whole time. Jen’s time is completely wasted lately. Jack’s sensory problems are coming to the fore, I sure hope Gramercy is equipped to deal with them. I used to be able to make Jack happy, but it is getting more difficult. I worry lately, that these problems are growing out of control, out of My control, and I hope somebody can help us bring Jack back to some semblance of normalcy before its too late. Very depressing time.

Sesame Street Live

Feb 8
Went with Jackson’s class to see Sesame Street Live today. The 8 kids in Jack’s class, along with about 30 kids from other classes, walked from the school to Madison Square Garden, which is probably ¾ of a mile away. It was a long walk, Reese cried the whole way, and many of the kids needed one-to-one chaperoning. The show was very fun at first – Ernie and Bert start it off and the kids go wild when they peek out from behind the curtain. Then Oscar, Big Bird, and a couple of others whose names I don’t know come out for the opening number. Then Elmo comes out and all the kids stand up and point and cheer. It was like the Beatles for 3 year olds and I couldn’t help thinking its probably a rush for whoever was in the Elmo suit, much like being a rock star.
They had sat us near the back, with a couple of rows of empty seats around. I’m not sure if that was by design or not. I looked down our row and one kid had his palms over his ears and was standing up and spinning every once in a while, one had his fingers in his ears, and one was asleep. The two girls were not really reacting, as usual. Jackson was no superstar, he would not stay in his seat and was fascinated by the light that was over our head, it was a big light that was not on. He kept coming back to it and staring at it, saying “big light” and pushing my head toward it. I hadn’t seen that kind of stimmy behavior in many months, so I did not have much patience for it. But at least (in comparison to his classmates) he knew what was going on, got excited at the right parts, and clapped his hands a little to the music and for applause.
It was revealing to see the other kids out in the real world – I had never seen any of them outside of the classroom. At school, it has always been obvious that they are lower functioning than Jack (except one of them who is in the same neighborhood), and at the show that was even more apparent. At the show, it was sad in a way – all the “normal” kids up front were going wild and having a blast, but although our kids seemed to recognize the characters, I think, it moved way too fast and was too hard to hear for most of them to follow or figure out what was going on. Most of those kids really don’t stand a chance, I don’t think, of ever getting out of the special needs world and making it on their own.
After about 40 minutes, big bird came out an announced a 15 minute intermission. I thought he was joking and the show was going to start right back up – sort of a tease for the kids. Turns out he was serious and all the poor parents had to control their kids who were bouncing off the walls while vendors marched up and down with balloons, cotton candy, twirly lights, and candy popcorn for $10 per. Really rude of them, if you ask me. I took the opportunity to leave early, as I wasn’t too keen on the idea of spending the 45 minutes taking the kids back to school.

My Son Jackson

In March, 2007, my son was diagnosed with PDD-NOS (pervasive development disorder - not otherwise specified) a "catch-all" category on the autistic spectrum. Jack has responded tremendously well to a program of intense therapy and dietary intervention, but not without change and stress placed on nearly every facet of my life - my marriage, my family, my career, my social life, my finances, and my values.
I hope to use this blog to record my thoughts and to share the knowledge I have gained about the autistic spectrum diseases in general, the causes, the treatments, and the stress it places on the lives of those involved.