all's quiet

Zach is not saying a lot these days other than when we try to force the issue. It feels like he is at some sort of plateau. His lead ABA therapist has mentioned she is concerned how long it is taking him to meet some of his targets, and that she believes he should be meeting them faster than he is.

I don't know what to make of this. I feel at the point that autism just baffles me. I don't know what he understands, I don't know how he feels, I don't know if he cares - but I do know that he is hungry. And boy can that kid eat lately. I am not really sure how to address any of his issues. I think it is likely time to get him checked out again - and should probably get on the horn to schedule an evaluation at either Strong or Yale.

I hate sulfamethoxazole

The diagnosis read "antibiotic poisoning". I guess it is best described as an allergic reaction - but these aint a bunch of histamine responses baby.

Please indulge me in some more self talk- I am trying to take my mind off the discomfort. If you'd rather not read my whine --- you can jump to WHINE OVER.

It's day four and I just took my temperature and am shaking like a leaf: 103 degrees. Yesterday, I suspected something fishy as I woke up in pain and running a fever for the third day in a row. The leg pain started Sunday which I thought was really unusual. What I thought were bug bites were readily becoming some sort of rash. No where on the medication information pamphlet supplied by the pharmacy did it indicate that fever was a side effect. Headache - but not the migraine I was feeling. Nothing about limb pain either.

Feeling stuck, I decided to be a Google doctor for the morning and typed in some search or another on limb pain and UTI's. Eventually after perusing a few sites, I found a URL for drug side effects and lo' and behold there were around 80 posts to this site discussing many of the symptoms I had *not posted by the manufacturer mind you* and the use of sulfamethoxazole.

I was calling all morning - both my OB GYN and GP don't open until 9. I scheduled an appointment with my GP and asked them to call me if they had a cancellation. I got a hold of the NP at the OB GYN - told her what was going on and she told me to stop taking the medication and that fever was a sign of a reaction to the medication. I had been taking the stuff for 3 days!

I have been alternating acetaminophen and ibuprofen - they neither alleviate the fever, the leg pain, or the migraine - they just make them more bearable. I took two Tylenol as I began this post where I started off at 103 - I got it down to 101.5 - woo hoo.

I am pretty much bed ridden - feel good here and there - but more often than not, can't do much. Steve wants to punch someone. He had to take the day off from work, because the supplemental respite worker I have come on Mondays and Fridays called in sick. This did not make for a happy husband. I am trying to keep my mind off of it - I am not nauseas anymore at least. That would be the worst.

But another day off from work, and there are a few there who are none to happy with my schedule lately. I have no options - I cannot go in so I must face the consequences. I have to check in with the doctor today - he threatened me with steroids if I don't start getting better. Being that I just had a 103 degree temperature and haven't been on the medication for 36 hours, I see my fate. There goes the biggest loser challenge - I am toast. I envision myself as Arnold Schwarzenegger from the Terminator. Oddly enough, having eaten only 3 small meals in total since Saturday - I haven't lost a single pound. I have been pumping myself up with fluids hoping it will help pass this junk in my system - and it has left me swollen.

They have decided holding off on treating my actual infection since the reaction to the medication is a bigger concern. Hurray. Something to look forward to when I am feeling better.

WHINE OVER

I have to laugh at the kids throughout this - they just love hanging out in my room with me - they brought an assortment of toys and a tent and get up on the bed and jump and giggle. As much as I am not feeling well, I like the distraction and the entertainment. I made it downstairs yesterday afternoon and hung out there the rest of the evening, even going outside for a bit (Beautiful day here). When we came inside, Zach grabbed me by my hand and brought me upstairs into my room, gestured for me to get into bed and climbed in bed with me and then began to play. Why my room is so fun I have no idea. I am glad that me being stuck in bed isn't freaking them out and gives Steve a small break.

Zach had 6 hours of therapy today - and I was able to witness it through the walls of our bedrooms. He did really well - although he did cry when pushed by the one therapist. The little guy just doesn't like to work. No emerging skills that I can tell of, but I try not to get hung up on that - they say that a a lot of kids are labeled as stubborn before they understand the child is autistic - I am here to tell you this is not the autism - the little puke is just stubborn sometimes. Imagine that - with Steve and I as parents. :)

The big dilemma Steve and I face right now is what to do about the fall- to put him into a school or continue the home based program. I'll write more about that at a later time when I actually weigh the pros and cons on it - right now my reaction is that I want to cry when thinking about sending him on a bus to school - at the same time I will be Sophia. While Sophie gets it and is excited, he will not have a clue as to why. Why can't any of these decisions be straight forward?

The not so fun to be a father Father's Day

I have had various health issues since last July - nothing ever serious but enough to slow me down a bit. The health care professionals I deal with all know my situation, and they all attribute many of these health woes to stress. Before kids I was an avid runner, that is indeed how Steve and I spent much of our time were health and fitness sorts of things. Once I had kids, I realized how easy it would be to let this habit go because so many other things could take its place.

I was pregnant with Sophie when I decided to complete my masters. Indeed I had been done with the coursework for ages, but didn't feel inspired to do my final masters project. I threatened Steve with a "do it now or do it never" regarding finishing his dissertation for his PhD before the baby came. He too had stalled- although he had completed boatloads of research and had a dissertation already drafted. We decided as a family that he would take time off from work to finish it. He spent many a night up until 4am, and he did it. When he defended his dissertation - I was blown out of the water about his public speaking skills and how he could handle the most complex questions with ease. Steve is a very quiet man and I found this very unexpected. I realized he was a very gifted man, and humble to boot. Amazing the things you learn about a person after you are married to them...

During the PhD commencement dinner, Steve's adviser whispered to me that he had never had such an easy PhD candidate. He had done an amazing job on his PhD. Steve was given an award for his dissertation for outstanding research, and we got to take home a nice little check.

We graduated together on of all days, Mother's Day 2004.

Steve had to push me to complete my masters. I did and was glad. But alas, I felt at a crossroads in my life. Having my master's and the work that I was doing could put me on a track to more responsibility and more money. I was about to have a child. I dug deep into myself and decided I wanted to spend time with the child beyond evenings and weekends. I decided to take the first 6 months off after she was born. I also approached the company about using me in a part time capacity. They readily agreed. Don't let all the grand plans fool you; even with all these compromises, balance is never achieved.

Sophia was a colicky baby - 4 months of non-stop no causation crying. This was not the bonding time with my child that I anticipated. Steve was working two jobs at the time - his normal job, and a adjunct teaching position at SU. At some point, when my mother and mother-in-law would come to help, I would just take off and run. Sometimes I didn't feel like returning home. I always did. Just when her personality began to emerge and I started loving every moment I had with her, it was time to go back to work.

I work at a company who started off as an academic research group and has had a very flexible way with its employees. Now that the company has grown, I see some of this going away. But a group of us still take our lunch hour breaks very seriously. We run - and several of the managers at the company do too. It was good to get back to work and have this hour to myself. I got back into shape, felt better about myself, and was more productive in the afternoons. It doesn't always work out. People try and schedule meetings during this time - but there are enough of us that usually push back on this practice that it doesn't happen enough to totally infringe on this 1 hour. I have run in the rain, in the snow, in the sleet, in 97 degrees, and in -6 degrees. We trail run through wetlands and on local roads around the building. I am not a skilled runner, my pace is slow, but I readily recognized that if there ever was a habit to have, running is a good one.

Lately, I get out, maybe, once a week. Nowhere what I like, and what I need, but it's something. The doctors all tell me to "make the time" and I politely give them my address and tell them I look forward to them babysitting for me.

I began to not take care of myself, and one thing after another with my health has happened. Right now, I have a urinary tract infection which has likely gone to the kidneys. I am running a high fever, some nausea, and can barely move. My husband now has 3 children to take care of, and only a card to open. Good thing I bought it weeks ago - I am such a planner. Actually his surprise was ruined when a very special barbecue sauce out of Cordele, Georgia arrived and he found the box on the porch. It's his favorite southern style sauce and it is from the small town my Daddy is from. Hey - its better than underwear and socks, no?

He graciously took the rugrats out of the house and to the zoo. He came back with a smile on his face, and I knew that it might not be the best father's day, but it proves what a good Daddy he is.

When the returned from the zoo, Zach was fast asleep. This didn't last for long, and he came bounding into my room, likely to jump on my bed. Steve tried to stop him, to which Zach replied: "oh no!" It made me laugh. He has begun using a few word phrases that are pretty funny. The other day when I asked him to go into the therapy room with me he said "I'm coming. I'm coming." He frequently will put his head on a pillow and say "night, night".

Alas, I think I need another shot of Tylenol and my fever is climbing back up. I will post this edition in hopes that in my fever-laden mind, I haven't written anything I will regret. Happy Father's Day to all the terrific men out there who love their kids as much as Steve love's ours.

You just never know

On Tuesday of this week, a beautiful sunny day in Syracuse NY, unlike today, I went out for a run at lunchtime. I was joined by 11 other coworkers who are preparing for the upcoming 5K Corporate Challenge. As one woman and I went out, I began to talk to her to ask her what has happened to her running habit since her marathon several months ago.

We discussed the impact of kids on things like running habits. She said to me at one point, "How old are your kids?" I told her 4 and 2 - and she said: "Oh, they're little. It's hard to get out for a run when they are that age."

I thought to myself, "Oh you have no idea lady. It may never get easier." But alas, even though I think these things, I try not to put them out there, except for in this blog. The concept of one day life resuming to some more normal state just doesn't feel possible at this point. Zach has begun to get into things - the toilet, likes to turn faucets on (but only sometimes off), pulled 2 plants down on the ground and dirt was everywhere! (in my carpeted rooms of course. what a pain to clean I tell you.) Now that we have him out of his "I wanna be by myself and chill" fog, he is acting like a typical 2 year old and getting into loads of stuff. In a way I find this amusing - however, he is almost 3, will it end anytime soon? Will he continue this for a lifetime or is it a phase? No one can answer any of these questions. It makes it a bit harder to clean up the messes when you think this is what life might be like as long as you're here. I know a family who has an 8 year old child - and he smears his fecal matter and recently tried to jump out a window. I don't think I am the man for the job when I hear these stories; I am weary already, how could I take a lifetime of this?

As the run progressed, I mentioned to the other woman that I was supposed to go out running that morning with a therapist of Zach's but she couldn't make it. Somehow we started talking about daughters and when I told her Sophia has some "goofy" issues - how I try to in laymen terms describe her stuff - the other woman asked like what. I told her "she has sensory integration disorder." Joanne then said to me, " I know what that is. My daughter has PDD."
And it clicked. This woman knew exactly what I was going through. PDD (Pervasive Developmental Disorder) is the older (yet still valid) terminology for ASD (Autism Spectrum Disorder).

Needless to say, the rest of the run was spent jibber jabbering about all things autism. She is a great Mom and has really pushed for her daughter. Her daughter is bright, yet verbally somewhat delayed. Her daughter is 11 and attends a public school. She recently took a bunch of finals. Her reading comprehension is about 2 grades below where typical peers are. Her math is out of this world. Her tantrums are few, but can be out of this world too. I saw the look of despair in her eyes when discussing a family vacation and public meltdown her daughter had while on the Disney Cruise. Autistic meltdowns are not like typical meltdowns because they seem to come out of the blue. There is no obvious antecedent - and more importantly the antecedent might not be avoidable anyhow.

She said this was quite a low point for her. She is resolved to get her daughter into college - and felt that with such issues that this might not be possible.

The meltdowns of course made me think of all the ABA materials I had been reading. Right now, Zach is receiving ABA to help build skills mostly, and we document tantruming. His old tantrums used to last 40 some off minutes, I think we have them down to the 7-9 minute range now. This is because he is an early learner. However, ABA is a terrific tool for using with older children with tantrum issues too.

I mentioned ABA to Joanne, but she told me that ABA only works well with younger children. I am not sure where she got this idea from. ABA is effective regardless of age. When juxtaposed with other methods, it might appear to be for younger children, but that is the thing - it shouldn't be juxtaposed. It should be integrated with other methods if for no other reason than the data collection which can help determine what is working and what isn't. Her comment lead me to believe that someone in a trusted position told her this, and we all (OK - a few of us) know how Syracuse is regarding ABA. I recalled a CNN article I had read where a family benefited from ABA and the child was a young teenager. I know this is one case - but I have talked to therapists who have done this with older children at some of the most prestigious treatment centers in the country, it is very helpful even for older students. But alas, she knows her daughter best - and her daughter is doing well. She told me some of the ways they do things with their daughter - and in the end they are doing behavioral management with her - don't all parents?

There are others walking in my shoes out there. We all have different situations (some with higher functioning children, some lower, some just different functioning), we all try different things to help, we all have different opinions on what works. However, most of us cry the same tears of joy when something unexpected is achieved, and sorrow when a step is taken back in the old development marathon. In the end, we all love our children and want to help them.

You just never know who you are going to meet and what is going to happen on a random Tuesday lunch after your running partner cancels with you. But I suggest you keep on getting out there and trying.

Pushing limits - endless possibilities

"The limits of autistics should constantly be pushed and their educational materials should never be simplified."

I read this line and thought to myself, so many of us already know this, thank you for a scientific study that shows this. Here's the whole article....

Published: Tuesday, June 16, 2009 - 11:24

Autistics are up to 40 percent faster at problem-solving than non-autistics, according to a new Université de Montréal and Harvard University study published in the journal Human Brain Mapping. As part of the investigation, participants were asked to complete patterns in the Raven's Standard Progressive Matrices (RSPM) – test that measures hypothesis-testing, problem-solving and learning skills. "While both groups performed RSPM test with equal accuracy, the autistic group responded more quickly and appeared to use perceptual regions of the brain to accelerate problem-solving," says lead author Isabelle Soulières, a post-doctoral fellow at Harvard University who completed the experiment at the Université de Montréal. "Some critics agued that autistics would be unable to complete the RSPM because of its complexity, yet our study shows autistics complete it as efficiently and have a more highly developed perception than non-autistics."

Fifteen autistics and 18 non-autistics were recruited for the study. Participants were 14 to 36 years old and matched according to their preliminary results on the Wechsler Adult Intelligence Scale. All subjects underwent magnetic resonance imaging to explore their neural activity during RSPM problem-solving. While autism is a common neurodevelopmental disability characterized by profound differences in information processing and analysis, this study showed that autistics have efficient reasoning abilities that build on their perceptual strengths.

"This study builds on our previous findings and should help educators capitalize on the intellectual abilities of autistics," says senior researcher Laurent Mottron, the new Marcel & Rolande Gosselin Research Chair in Autism Cognitive Neuroscience of the Université de Montréal and psychiatry professor. "The limits of autistics should constantly be pushed and their educational materials should never be simplified."

Adds Dr. Soulières: "The Raven's Standard Progressive Matrices are among the most complex tests to provide insight on how a person understands and formulates rules, manages goal hierarchies and performs high-level abstractions. Our wager was that autistics could complete such a test and they surpassed our expectations."

There are many questions that parents ask themselves when faced with a child with autism. One of the biggies, especially for those that are higher functioning, is:

Do I tell others about my child's diagnosis?

This question can be asked for a number of reasons. Some of it is vanity - not wanting others to know we have anything less than a perfect child. Some of it is fear, not wanting those fools out there to tease our child because they are different. And some of it is hope, wanting our child to pursue to the highest degree all that is possible for them. I have heard countless stories from parents speaking about how their high IQ children enter the school system, only to be given meaningless tasks to keep them busy to teach social skills and work on some behavioral issues, all without any academic merit. Teachers hear that the child has a disability and frequently expect less of them because of their odd ways, behaviors and mannerisms and inability to express themselves.

Temple Grandin, perhaps the most well known living person with autism, stated in a video I once watched that people with autism are what they do; that intellectually satisfying work makes life meaningful for them. I am not sure of the exact phrase she used in the video - but I recall the moment she said it very well; it sent shivers down my arms and brought tears to my eyes. I realized that that was true of me as well (even though I don't believe myself to be autistic) and that my self worth, the way I feel in general and about myself in particular, has always been based more on what I am doing than other things such as the items I own, the places I go, the people I see. Yes, in my world, even relationships frequently come second to the feeling that I am contributing to the society we live in by my efforts.

I think about so many young women I see now days - wearing provocative, designer clothing, perfect makeup, drinking the martini du jour, to create an image and basing their self worth on their attractiveness to men. Indeed, in my twenties, I succumbed to that myself a bit although I was geeky engineer, so not as much as others. Self esteem is a big issue for a lot of people - and I think it's because they base their self esteem on society's values (and face it - looks and money are the basis of success in our society) and that doesn't really match up with what truly makes most smart people tick.

Sometimes I wonder is autism is not a disability, but rather an evolution of mankind. Is it mother nature's way of snapping us back to grid - using our brains and not basing things on more primitive elements such as sex, money, or power? Wouldn't that be a hoot.

Mondays

I was asked if I had a relaxing weekend. Hmmm. The answer is no.

But what is a parent of two young children going to say? They didn't nap, were excited about the puppy, and we were trying to clean up the house from the mess of the week which takes the whole weekend. Are you other parents out there with me on this?

I still try to take the time to just sit there and hang with my kids. You know how when they are sleeping you will occasionally just stare at them with wonder? They look so sweet - and the fact that they are sleeping gives you the time to really contemplate all they have done and hope for all they will one day do without the whining and boundless energy diverting attention from what is meaningful.

I now try to take these same moments with the kids while they are awake, albeit a more difficult task. I will sit on the couch and just concentrate on them and not worry about the dishwasher needing to be unloaded, the laundry that needs to be made, the groceries that need to be bought, the unending to-do list or the weight-on-my-chest-disabilities.

I pay attention to just them, and frequently am rewarded with a funny remark, gesture or sweet interaction amongst siblings that makes me say "Wow - I made that." Sophie has the best one liners in town - I have begun to postthem to facebook and after a great suggestion, decided to start and log them. I only wish I could have started this sooner. She is so-o-o funny and unique that way.

As for Zach, I was starting to get a little weary again when I hadn't seen any significant progress in the past few weeks. His schedule has been terribly disrupted with illnesses, both his, his sister's, and a therapist or two, which has made him lose the consistency he requires. Frustrating.

And then there was the other night. As he lay on the bed with me since he would not settle down in his bed to go to sleep, I told him to say: "Night night to Dada" to which he said "Night night Dada". Whoa - he didn't just echo it and it blew me and Steve away. Steve walked right back in the room and kissed him with such an intensity on the forehead that I knew he felt the thrill I did of just witnessing such an awesome moment. Such a simple gesture, so unexpected, but we made ourselves available to hear it and we are so glad we did.

Cooper comes for a visit

We decided against going to a family wedding - for so many reasons - but were sort of disappointed about missing out on it. The good part is that my niece's pup, Cooper, is getting to stay with us for an overnight. I am totally excited about this. He is such a cute little bugger.

It's funny getting used to having a dog in the house again. It feels so good - but it is work. The puppy thing is kind of tough in the beginning - I always say that Steve got off easy because I took care of the whole puppy business with Buddy. Buddy was 3 by the time Steve came into our lives.

Sophie and Zach really like the little guy, even though he is quite the escape artist. I opened the door and off he went and the more I called him and chased him, the more he ran away. Steve told me he wanted to kick his little but. That is a puppy for you. The kids really seemed to enjoy his presence. One day...