#10

Last week, I had tears on my pillow when I thought about today. Grant's 10th birthday - a cause for great celebration to be sure, but also a time for reflection. It doesn't take much thinking to bring on the emotions and so I try my best not too. After many years of rabid research, IEP trainings, and ongoing therapies, the last year or so has been a nearly conscious avoidance of such things. A little less knowledge, a little less hope, but a lot more acceptance.

So, back to #10. Nothing like throwing a party for your 10 yr old to face the fact that your 10 yr old has no friends, at least not in the same way we all have friends. At the same time, there is nothing like throwing a party for your 10 yr old to realize how incredibly blessed he is to have so many friends and family who love him to no end. But then when those incredible people ask 'what does he want' and you can't come up with more than a couple of things that would bring a smile to his face - well you just can't avoid the unavoidable.

But I'm really not a pessimistic, wishy-washy autism dad. My tears are only found on my pillow. My job is to be strong and lead the way for my family. And one of the true joys in my life is to see joy in Grant's life.

Today, #10, was a great joy in Grant's life.

Staci did a fantastic job planning the party. Where do you go, and how do you know he will like it? Her great idea was the local inflatable jump house place - a big room with cool inflatables. Who do you invite? His class - 10 great kids, but they don't really talk to each other. Our friends and their kids, and our family. Who knew how that would all come together, but Staci knew it would be great, and it was!

What a wonderful thing to see smiles and laughter from every kid, autistic and neurotypical. Playing together, playing alone. No uneasiness, no worry about how to act, just playing, just laughing, just friends. As he opened his presents, with the NT kids talking and the autistic kids looking around, he was grinning from ear to ear as he opened a few things he liked and threw the clothes boxes over his shoulder. And the cake... after years of not being able to eat 'real' cake, we splurged and let him eat real cake today. He savored every bite and will enjoy watching the video of it many times over.

Grant turned 10 today. He enjoyed every moment. He smiled. He laughed. Others enjoyed their time with him.

Tonight, there will be tears on my pillow, and they will be tears of joy.

Unacceptable

Regardless of where you stand on the vaccine controversy, this is unacceptable. Please do your part and bombard Prince Georges County, Maryland with complaints.

Tis the season

No, not THAT season. THIS family loves THAT season.

No, it's IEP season. We have IEP #6 coming up next month and today was the first round of prep work with the school. We have a meeting about a month beforehand with his teacher (we had that meeting today), at least one of the paras, speech, OT, etc. We go over last year's IEP, review status, and we discuss the goals for this coming year. More often than not, we're on the same page and given that it's been awhile since we've needed additional services, there is little to no conflict.

Over the next month, we'll refine the goals and procedures so when it comes time for the actual IEP, it's just a matter of signing forms. Sounds good, right? So why then do I feel like I got hit by a truck when I walked out of today's meeting?

This meeting is the one time during the year when I'm forced to acknowledge "everything". The other 364 days of the year we can work with him, play with him, celebrate the positive, and try to solve the problems. But reviewing the IEP goals, it hits home how slow the progress is coming. How long the road is going to be. How life is going to be. Surely he learned how to add numbers since last year, right? Surely, he can say the name of everyone in the classroom, right? No, he met a few goals, but most of the goals will continue in a similar form.

3rd grade will lead to 4th grade will lead to 5th grade and we will still be working on a subset of the skills required for 1st, 2nd, and 3rd. We'll still be trying to teach him how to talk to other kids, why that might be useful for him. I'll still be teaching him how to ride a bike, how to catch a ball, and how to pump his legs on a swing.

This is what hits me when I walk out of that meeting, feeling like an elephant is sitting on my chest. The life we live, not the life as we dream it, is going to be very, very hard for Grant. It's going to be harder for him than all of us put together.

Tomorrow, I'll wake up and the weight will be lifted. It will be time to make breakfast, time to bring laughter, time to create opportunities. But today, oh today, it hurts.

who

I ran across this photo collection site, Square America, and quickly became lost in it. People, places, stories - all unknown. Fascinating.

Then, I ran across this one.

What do you think? It looks like an institution to me, sometime between the 30s and 50s. I look at the faces. I'm reminded of a thought that often strikes me, what would Grant's life have been like if he had been born 30 years ago? 50? 80? 100? Would we as his parents have had the courage to fight against the societal norm and keep him at home? Or would we have shipped him off to some place like this when it became clear that "he was not like the rest of us"?

What's going through the minds of all those men? What could there lives have been like if they lived today?

Middle Ground

Today brought disappointing news on the chelation front. The latest test results show that the chelating process is not as effective as it was during the first 6 months. It seems he's hit the proverbial wall and now the question is, what do we do about it? We'll have the more formal review w/ the doc on Monday at which time I'll have plenty of questions for him, but in preparation the doc has suggested we look into nutrigenomics as the next step.

Nutrigenomics? Sounds like a mix between breakfast cereal and math class if you ask me.

A quick Google search yields 347,000 results. What? How could I have not heard of this before? Ok, let's narrow that down to only include autism results - we're down to 37,500. Hmm... I should be done looking through all that by the end of the year.

It doesn't take long, however, to see that this approach is, much like chelation, a no-middle-ground approach. You have the biomed camp which is 100% positive about it, and you have the neurodiversity crowd which treats it (and every biomed approach) as akin to child abuse.

I could read all those web pages and I don't think I'd find out much more than that last paragraph said. It's become a war out there between two extremely vocal sides, and there seems to be absolutely no middle ground. Well, here we are. We are in the middle. Who's got the real answers? Is it quackery? Is it a new effective, but as yet statistically unproven, approach? Is it cutting edge or a slippery slope?

Now for more black and white... Has the chelation helped? There is no doubt that Grant is in a much better place than he was when we started. His ability to communicate has increased greatly - both by written word and with his speech. We're still nowhere near conversation, but he is using his words so often now on his own and the list of words continues to grow. His drawing skills have really taken off, and even just in the few weeks he's taken that to a new level. But has it been the chelation? Or was it just school? Was it the diet? Was it the supplements? Nobody knows...

On the home front, the news today was tough as well. Staci and I see things and interpret things in such different ways, with today's news being a perfect example. Staci was heartbroken to hear the results today; she had such high hopes that Grant would be talking soon. I took it more in stride as par for the course; to me, it's just another approach to help get him talking and to help him understand the world around him. We're going to do whatever we can to help him live his life to the fullest extent possible, but the ebbs and flows along the way definitely take their toll. Regardless, we're going to ride it through and we're not going to fall into the ugliness found on either side of the biomed and neurodiversity crowds. It's about what's best for Grant, even when we have to make up the answers ourselves.

More than one

Words. When people ask about Grant, or meet Grant, it's usually his lack of words and lack of communication which make the strongest impact and "bring it home" to them. Other concepts like sensory issues, social skills, etc. don't have the same effect. But "he doesn't talk", now that hits hard.

Words. In the early days, his 3rd through 5th years, the communication gap was so bare, so basic, that it was almost raw. There were maybe 3 or 4 things where he could get his point across and it had to be something physical that he could drag us to, other than that, it was just a guessing game. But then, somewhere around that 5th year, he grasped probably the single most important concept in his quest for communication. He learned how to communicate yes and no. "yes" was sign language, "no" was verbal. He learned the power of those words quickly - he could say "no" to something he didn't want or like, and we would respect his wishes. Even though he has learned so much and shown so much progress since then, "yes" and "no" are still the most powerful tools.

Words. When communicating with someone, we expect certain things such as respect, to be addressed, and that the speaker will also listen when he/she is done. For Grant, of course, it was just a one-way street for so long. We would talk to him. We would say his name. He might try to say something, might try to sign something, but he had no indication of a desire to continue communicating, to listen and respond. While he has been able to say his sister's name for a few years now, it was never in direct communication. Until 6-7 months ago, we never heard our names leave his lips. But now, saying "up, Daddy" or "throw me, daddy" are common (although learned from much repetition). Not only does he try to address us, he does so in such a way that he wants a response. And from our response, he may follow with another instruction or desire.

Words. Put a few words together and you've got a sentence. Put a few sentences together and you've got a thought. Put a few thoughts together and you are communicating your feelings, your imagination, your desires, your fears. And so we shower applause on Grant as he moves beyond just words, and into sentences. This weekend, at two separate times, he put several words together to speak a sentence. "cup ice water juice please daddy" and "bread please mommy".

He spoke. We listened. We spoke. He listened.

Communication.

Consolation prize

How is it that I go a week without posting when everyday is full of new stories from the kids, new challenges, and new achievements? Somehow, by the time I sit down to read blogs at around midnight, I've forgotten everything that I tried to remember. I'm constantly amazed how other parents can write almost daily and turn out incredible prose. Oh well, maybe I'll figure it out someday. In the meantime....

Last weekend, Owen got busted for something and was sent to his room. He was crying quite a bit while I talked to him about the issue when Grant walked in. Usually if Grant walks in during something like that, he would either cover his ears and walk out, or take my hand because he wants something. Not this time. He came in the room because he heard Owen crying! He walked right up to him and gave him a hug, saying his name "Owen". Incredible!

First, he reacted to something he heard from another room. Second, it wasn't something interesting like a video or toy sound, it was his brother. Third, he gave a very appropriate hug and showed concern. It seems like such a short time ago that Grant wouldn't respond to anything, a shorter time ago when he was not able to say any of our names, and even shorter when he would have just hit Owen for making noise.

Gotta love it!

Mercury proof?

The first article in the latest Schafer Autism Report, with a study showing that the autism population has a consistently higher mercury level, certainly appears to be a silver bullet. However, a quick Google search revealed no background info and it would appear a bit too good to be true. It'll be interesting to see how this plays out over the next few weeks as the 2 "sides" fight it out.

The article does remind me, though, that I am way behind in my chronicling of Grant's chelation process. While the 1st 4 months went very well, we started to see improvements level off around mid-February, and we also started to see him starting to hit more, we saw his clapping/stimming increase, and his teachers reported that he was, at times, hard to reach. Since this was so different from the previous 4 months in which we consistently heard from multiple "partners" - "whatever you are doing, keep doing it!". So, we did not hesitate and we contacted his Dr.

The Dr. suggested that we immediately stop all chelation and supplements. Either he was reacting to something new in the supplements, or his body was reacting to it differently. We went off everything for about 2 weeks, and have since started slowly reintroducing the supplements to see what might be the cause. In the past 2 weeks, the negative behaviors have gone way down and his vocabulary has started increasing again, so it's pretty clear that something about the supplements, or the combination of them, was not doing him well. It's going to take at least a month to get him back on everything, but we'll see what happens. The only thing I can think of that changed was we introduced Malic Acid earlier in the year, and I believe the brand of Magnesium had also changed.

Today was so exciting though, watching him participate in the Easter egg hunt. There were about 12 kids present, so there were lots of eggs! Each child had their own color to look for, and we are so fortunate to have understanding friends and family who accomodated our request not to have candy in the (plastic) eggs. I never heard one complaint from the kids or the parents - thank you!!

Grant's color was purple, and he understood quickly that he was to only pick up purple eggs. He did great, looking only for his eggs and not giving up till he had all of them. It's so exciting when he stays with a task that long!

In addition, he's been putting more words together to communicate. For example, last night at bedtime he asked (said) water (wa-wa), juice (ju), and then cup (cuh). Yes sir! I did my duty and brought back his requested item. He took a look and then said ice (i). Fantastic communication - 4 distinct words, all used to communicate his needs/wants and they were said clear enough that I had no issue understanding his request. What an incredible feeling that must be for him to get his point across without struggling!!

Video for Autism Speaks

Here's an interesting little project to raise money for charity, this particular video is raising money for Autism Speaks. There are other videos on the site as well, but this is the most engaging. There are some beautiful pictures as well as some challenging words. I learned about this video from Krazy Kat and Mother's Intuition.

I'm sure there are many bloggers who decry such a video and who abhor a line such as "a world where autism is a thing of the past". There are a few commenters on the video itself who fall into that category.

The problem is that the word 'autism' is drawn with too wide of a brush. Somehow, the syndrome covers each of these and more:
- a child completely unable to communicate and unable to cope in most environments
- my son who has a very hard time communicating, has "odd" gestures, has apparently no desire to make "friends", but at the same time enjoys doing many of the same activities of other kids his age.
- a boy who has no issues communicating either by speech or by writing, but has a very hard time understanding social situations.
- children born with a very noticeable "difference" from day 1
- children, such as my son, who develop normally until around age 2 and then regress into their own world.

When a video like this says that we ought to make autism "history", I think it's suggesting that many of these children are living a life unfairly thrust upon them due to environmental reasons. Those battling this concept of a "cure" or making autism "history" seem to be the most likely to deny environmental reasons for this disorder, that autism is just "normal". There may indeed be some number of on the spectrum who are "just that way", but due to the wide spectrum of autism they have the same label as someone like my son.

It's not fair to either side, the only fair thing would be to abolish the "spectrum" idea and diagnose the various symptoms differently. Until that happens though, and it never will, I fall in with the "cure" camp and strongly believe that far too many of our children are suffering with neurological damage due to environmental factors.

Hands off

What do you do when you can't get your point across? When people don't pay attention to you? When it seems as if others are speaking a different language?

Grant deals with these questions every day. I can only imagine what my own response would be. I know how frustrated I get when I just have to repeat myself.

Since his earliest experiences with ABA, one of his answers has been to hit the closest person. Well, "hit" is a bit strong... it's really a slap on the top of the head. He's never hurt anybody, but clearly as he gets bigger and stronger, it's become a serious issue. He hits when he's frustrated, when he just can't get his point across - especially when he's being told to do something and his point is "no".

At a team meeting with the school a few months back, we all agreed it was time for the hitting to stop. We also agreed that a positive reinforcement system would be our first plan; we just needed the right reinforcer. One of the hardest parts about doing true ABA with Grant is that reinforcers are short-lived for him. Even when it's his very favorite thing in the world, he's willing to give it up so that he doesn't have to do the task at hand.

So what to use? It turns out, he answered this for us himself. One day when we were playing with the Magna Doodle, he writes "Hollywood Video" just as clear as day. Now, not only did we not know he knew how to write this, but we didn't really know he had a concept of what the store is about. We'd only been there once or twice, but evidently he remembered it very well as the place with all the movies. Not long after this, it was very clear that Hollywood Video would be our positive reinforcer.

His teachers have been fantastic in implementing this plan. At first, they were keeping him out of situations which had been prompting hitting so that he could get the positive reinforcement. After about a week, we were sure he completely understood the trade-off so he was taken off the 'easy path' and he was expected to stop hitting in all the normal school situations. It's definitely been a success; he'll go several days getting his prize, and then a day or two with a hit. There have been days when he cries at the end of the day when he came so close and he knows he won't get his video fix that day.

We've also used this at home on the weekends. His little brother has been the happy recipient of less hits on the head. Even more exciting, this task has brought new, unprompted words from him. In the afternoon, when he knows that he has not hit, he walks up to me and says "no hitting, Hollywood Video, Grant". It's probably his most diverse set of words and phrases and he came up with it all on his own. More words and less hitting - can't complain about that.

Autism around the world

After a fun but tiring weekend I sat down to catch up on a few blogs. Mom-NOS is always my first stop, and her post was a good laugh. Kim Stagliano's blog was next, and the last for tonight. I'm not sure how well I'm going to sleep, if at all, after reading it.

Tonight's post - An Autism Calling - was a re-posting of, apparently, a friend of a friend's blog. Autism around the world - it's a thought that has often struck me, especially when others ask me about autism. It's not just a US thing; it's a world-wide issue. The rise is occurring in both developed and undeveloped countries. But while we here in the US struggle with our local school districts, we, for the most part, care for our children. We love them and do our best for them.

However, how many tens of thousands of kids, just like my own son, are struggling to survive because of their condition? What would my son's life be like in North Korea? Would he even still be alive at age 7? What would his life be like in another country? Would he be chained up because he can't talk and he can't pay attention like the other kids?

We live a blessed life, and I thank God for it. We spent the day, a warm March day, playing in the pool. We do our little part for the autism community, and the larger special needs community, by running Club Kangaroo. We must continue to do our little part. But -- the problem is so much bigger, and after reading this post, so much more desperate.

Where do we begin? How do we help? Which organizations are trying to help across the world?

The thought of any child starving, suffering, and even dying because of autism is too much to comprehend. There must be a way to help.

Fascinating history of mercury

The latest in Dan Olmsted's fascinating series of articles on autism...

Mercury Rising
A Possible Link Between Chemical Exposure And Autism May Have Been Overlooked In The Very
Earliest Cases At Johns Hopkins

Regardless of your take on the role of mercury on our population, this is worth reading just for the historical aspect of both autism research and agriculture.

13 percent

The headline caught my attention - 13% of kids in Oregon are in special ed. Whoa! What's up in Oregon? The first thing I thought was "how could it be so high?" I mean, the California average is probably 5% and the national average is maybe 3-4%. What's up in Oregon? Well, a lot of California transplants, that's for sure.

And then the article ends with this kicker - 12% of kids nationally are in special ed. First, the headline about 13% meant nothing, what appeared to be completely abnormal was right in line with the average. But 12% nationally? That seems huge to me, am I way off? Even w/ the 1 in 150 autism numbers, that barely makes a noticeable dent. I'm interested to find out how the other numbers play out, I'd imagine a big % is speech, hearing, or vision as opposed to learning disabilities.

However, 12% strikes me in another way. This number is yet another reminder that a great number of that 12% is invisible. We don't see them (even those of us with the 12% living in our homes). These kids aren't at the parks, they are not on the ball teams, they aren't, as much as I hate to admit it, in our churches. This notion of invisible kids has been with me since I first attended a fund raiser for the Capernaum Project in San Jose. This ministry started in San Jose but has since grown world-wide and is dedicated to bringing fun, friendships, and love to these kids. They are truly inspiring.

Maybe, someday, after many others take on the same focus, the 12% will no longer be invisible and it will no longer be such a shock that 12% of our kids are in special ed. We can dream...

At the beach

First - exactly.

Second - what a great way to start the new year. We all slept in after a fun party at our place New Years Eve. It's our tradition to have a party at our place - kids included. These days, the kids outnumber the adults but they haven't figured that out yet. :) Anyway, New Years Day was the last day before going back to work after 10 days off, so we wanted to get out and do "something". Around 1:30, we were still lounging around when the ultimatum came down - either we are taking the Christmas stuff down or we are going to the beach! 30 minutes later, we were on the road...

It was an absolutely beautiful day in Santa Cruz. We walked around looking at starfish, sea cucumbers, sea anenomes and all that fun stuff. Each of the kids enjoyed the day in their own way. Cassidy is our explorer - she was off on her own, shoes off and pants rolled up. Grant was determined to chase down a seagull. Owen let everybody around know that he was a big boy jumping over the puddles in the rocks!











One of these days, we're going to catch these 3 in the perfect picture. Until then, we'll keep trying...














Here are a few of those starfish...















And to cap off the day, a wonderful sunset.

May all of "our kids" experience a grand 2007, with all of the education, therapies, and "help" they can handle.

A hero for our kids - rest in peace Dr. Rimland

I was shocked to read tonight of the passing of Dr. Bernard Rimland - a true hero for our generation. Before I was even born, Dr. Rimland was fighting the medical establishment to improve the lives of all touched by autism. When history looks back at the great leaders of our time, I'm sure his name will always be brought up.

It's been 4 1/2 years since our own son was diagnosed with autism. In those days, as we searched for help and hope, it was his web site and publications which provided a great source of education and ideas. Certainly our son is better off because of the early information we learned from ARI.

May we always remember his fight and strive to give back what we can to the autism community.

BIG DAY

Every morning, it's the same routine. Get everybody ready and out the door. Get the boys in the car. Take Grant to school. Try to control Owen in Grant's class (he tries to run the class). Take Owen to school. Drive to work.

Every day - the same schedule. The only variety is - how late are we, will the boys behave, or will one of them (usually Owen) be tough to deal with.

But Not Today. No, today was Good News Day.

After walking Grant in to his class, his teacher pulled me aside.

"We're going to start mainstreaming Grant", she said. My morning-fogged brain suddenly cleared - did she really just say what I thought she said?

"We were going to put him in a 3rd grade class, because there is a really good teacher in that class. But his para said 'Let's put him in the Kinder class. I think he can do the same work as the kids in the class.' He'll be in there 1-2 hours a day. We think he's ready, is that OK?"

"Of course, if you think he's ready" I said. My eyes welled up with tears; I couldn't say anything more or I would have lost it.

"We are really excited - he's ready", she said with a smile.

Can it be? Are we really making progress? In the first few years of school (ages 3-5), we had hopes of mainstreaming. But, over that time, it became clear that his speech was not going to come as quick as we hoped, and his ability to take instruction was not where it needed to be for a classroom environment. In addition, he receives more individual instruction in his SDC than he would in a 2nd grade (his grade level) class. We knew that it was not in his best interest for us to push mainstreaming. It would happen when and if the time was right.

And today, the news came that the time was right. He's making progress. He's learning. He's applying his skills.

It's a beautiful day.

Autism and Google

Google always has something new to play with, but the news archive search may prove to be the most addicting. The news archives go back to the early 1800s! Although it's cool seeing some of those old news sources, the character recognition leaves a lot to be desired; I think my old Commodore 64 did a better job than a lot of these...

I started playing around with searches and then it hit me - when did autism start showing up in the news? The first understandable source I can find is the Frederick, Maryland News from 1949. According to the paper, "welfare state" and "autism" are now banned from press releases and speeches prepared by the Republican National Committee. Crazy! All you democrats should have a field day with that one! :)

The first description of autism I find is in the Salisbury Times (Maryland) from 1957. Although unrelated, I had to laugh at drug houses conservatively estimate that last year Americans took out 35 million prescriptions for happiness pills. Times haven't changed a bit! As for autism, the mention is only because the article is talking about the publishing of a Psychiatric Glossary, and of course autism starts with A...

The first real article shows up in 1960 in The Valley News from Van Nuys, CA. A good description is given, but the cause is listed as refrigerator moms. It is also described as wooden doll illness.

Articles grow very slowly until the early '80s and then they grow exponentially. There are approximately 2700 in the '80s, 12000 in the '90s, and then over 9000 in 2006 alone.

I'd love to hear about interesting articles from the past if you find one. Happy searching!

Milestones

I can't believe this is the 3rd week of school already. Mornings are still crazy; we should have it figured out by Memorial day... Cassidy starts school at 7:40, Grant at 7:50 and then I drop Owen off at preschool after that. Does anybody else's school start that early? And here I am reading blogs at 12:30 am. I wonder if that's why it's so hard to wake up in the morning?

The beginning of the school year and beginning the process of chelation have had me thinking about how Grant has grown in all areas since he was 3. Here are some of the major areas that have made such a difference in his/our lives.

• Saying yes/no - I think this came late in his 4th year and I still think it is the single biggest hurdle he's leaped. Prior to this, it was nearly impossible to find out what he needed or what he wanted. What a marvelous experience it was to see (at first his response was in sign language) and then hear a response when we asked him a question or gave him a choice. I believe this skill also quickly allowed other communication skills to flourish as he figured out he could get what he wanted with so much less effort than before.
  
• Unprompted words - For so, so long all of Grant's words were prompted. Although he was beginning to put the sounds together in forms that we could just begin to understand, it was so much work to prompt him. Unprompted words, when they appear, are like finding a $20 bill on the ground - totally unexpected, exciting, and gone in the wink of an eye. He says all of our names now, although saying 'Cassidy' is the most impressive (it's his only 3 syllable word). He has said 'home' to us when we're out somewhere and he's very tired. And, of course, 'Bathroom'.
  
• Putting on a helmet - If Grant is going to ride his bike, he has to wear a helmet. Well, I kept telling myself that anyway. We tried to get his helmet on for 3 years. A couple of times, it got on but it was short lived. For about 18 months, a great friend of ours had us come over and work with Grant while riding a pony. I'll have to post about that experience another time, but of course that required a helmet as well. Yeah right.
  And then, one magic day late last year, he just put it on, buckled the chin strap, and we were off. Oh how I wish he could explain what happened that day and why it is no longer a problem, but it isn't and that's all that counts!
  
• Toilet Training - We are so fortunate that Grant is now fully potty trained and never really had that fascination with poop that so many other kids have. But, oh, those years of training. I truly doubted whether he would ever get it. Time after time, I would clean up the mess. Time after time, we would bring him to the potty. And then, he started picking the toilet icon all by himself. And then he just started going by himself. And then he started cleaning up after himself. And now he washes his hands when he's done. And it never ceases to amaze me.
  
• Dressing himself - How do you teach him that the tag goes in the back? To snap? To zip? To match colors? He picked up these skills pretty quickly, actually. His OT was awesome in getting his fingers to button, zip, and snap. He found the skill interesting and picked it up. I love being able to say "Get Dressed" while we are downstairs and he goes upstairs, picks out some clothes, and get dressed.
  
• Eye Contact - When this all started, Grant was completely unresponsive. I'd get right in his face and there would be no response (this was around 2.5 years). The ability to make eye contact is of course very hard for so many of our kids, and the "teaching" of eye contact varies widely. ABA is "look at me" 5000 times a day. RDI is getting him to find interest in your face so that he seeks eye contact. I definitely lean towards more the RDI approach, but more than anything, I think it's just been time and maturation which has brought him forward in this area.
  Tonight, Grant and I had a very tough time when he needed to take his supplements. After about 20 minutes, I sent him (sternly) to his room. He was upset and of course I was frustrated as well. A few minutes later, I went up to his room to try and explain the concept to him (again). As he sat in his bed, playing with a few character toys, he looked right at me with his eyes wide open, easily making contact for 7-10 seconds at a time. I talked to him, he looked at me. I talked some more, and then he leaned forward and gave me a hug. He looks at me to gather information, not because I tell him to. I think he's curious. I think he's puzzled. I think he's the most amazing kid.
  

I'm stunned when I look at this list. He has worked so hard, and he wants so hard to understand and to be understood. We will continue to work as hard on the new skills as we have on these, we'll continue to celebrate the victories, and the future will bring what it brings.

A haircut - without screaming?

Will wonders never cease...

Today was haircut day. In most households, that means the boys go to the barber, take turns getting into the big chair, get a lollipop when they are done, Dad pays, and everybody goes home a couple of ounces lighter.

Um, we aren't most households. It's been 4+ years since us boys have been to a barber shop to get our hair cut. I think it was right before Grant's 3rd birthday (insert dreamy memory music here)...

We went over to our local barber, just Dad and Grant (Owen was just a little baby then), to get a nice hair cut before Easter. Grant began crying when he got in the chair, but surely he would be pacified with a lollipop? The nice lady began to cut his hair, ever so gently... The crying becomes screaming. Maybe it would be a good idea for Dad to sit in the chair and have Grant sit on his lap. The nice lady turns on the clippers and takes a couple of swipes on the side of Grant's head. The screaming becomes a full-blown, out-of-control melt down. Dad decides, for the betterment of all within a square mile of the barber shop that we better pay quickly and leave even faster. One problem, Grant's hair is about 20% cut, and it is the day before Easter.

And so begins the story of how Staci learned to cut the boys' hair at home. That's not to say that the experience of cutting Grant's hair had gotten any easier, it was just done in the privacy of our home. Screaming, yelling, running, squirming - haircut day became the most dreaded day in our household.

Over the years, we've learned that Grant's ears were incredibly sensitive. The sound of the clippers, the sound of the scissors, the touch of either - it drove him crazy. But, we also learned more about sensory issues over those years and found that we could concentrate him on other areas of his body to help a little bit. It was still horrible, but we could get through it. Still though, when you are dealing with sharp scissors and Grant is making these sudden movements with his shoulder to cover his ear, or a sudden swing of his hand up to his ear, it's a small miracle that he was never hurt.

But back to today... today was haircut day at our house. And Grant let us cut his hair!! He let the clippers get close to his ears. He let Staci cut the fine hairs over his ears. He didn't squirm. He didn't squeal. And then he was done. And his hair looked good. And it was one of the most amazing experiences of our lives.

Days like today allow us to continue to hope that his many other challenges will also improve over time...

A gem from Tivo

We've got our Tivo setup to record anything about autism/autistic and while usually this ends up recording a goofy movie or some incredibly boring PBS show, it gave us a real gem this week. The show is named Musical Savants (Discovery Health Channel) and features 2 blind boys with severe learning disabilities who are musical savants.

Their lives have little to do with the autism we experience on a daily basis, but they are absolutely fascinating. One simiilarity I did see was how the younger boy covered his ears when he heard too much or heard unfamiliar sounds, even new music. However, when 'his' music was playing he never had to cover his ears.

Grant (our 7 year old) puts his fingers behind his ears to block out the sounds, or is to change the sounds? Maybe someday we'll find out, but he can't explain it to us yet. Sometimes it's obvious what the noise is, but more often than not, it's some mystery known only to Grant.

Back to the show... it was mesmerizing to watch these boys' abilities at the piano. At one point, they had the older boy working with a small orchestra. Each instrument was playing a part of a different chord (15-20 different notes). The boy was able to hear all of the sounds at once and play them back on the piano. Since he clearly can't play more than 10 notes at once, he played them as an arpeggio.

If you have a chance to catch the show, it's worth your hour (or if you have Tivo, worth your 40 minutes). It's a great glimpse into the incredible complexity of the human mind.