Two Years Later

It has been about two years since writing my last blog post. That's twice more huddled at a school conference table to discuss my son's I.E.P. (individualized education plan) with a team of teachers, administrators and therapists to craft the blueprints for his upcoming education & therapies in the following year. I am proud to say that those small glimmers of improvement we had seen two years ago and hoped would grow to be more in Gregory have become true pictures of real change. But it was not possible without the unrelenting hard work, caring and dedication by his team, and definitely not possible without Gregory following along with all he faced. We still have a long way to go, but feel we overcame a major plateauing of skills about two years ago when we unfortunately had an unsympathetic teacher with borderline abusive tendencies & real problems, which is another blog post in itself.

Here is a picture of my G-man from recent days -- the hardest-working 7-year old I know.

He Ain't Heavy...

Mark is Gregory's youngest brother, but at age 4, Mark is well beyond his years in loving and caring for his big brother. When I watch the two of them playing, autism is no longer in the picture because to Mark, autism does not exist. Simply, he loves & looks up to his big brother for who he is, and accepts him totally as he is, just the way he is. He plays with Gregory the way nobody else can. Older siblings often get annoyed at how autism gets in the way of things, and are not as understanding when Gregory messes things up for them. They blame Gregory a lot for things even though it is not Gregory's fault he has autism.

Here they are in the backyard. Gregory decides to lie down on the cool grass. So Mark lies down next to him too. Gregory just had his legs up in the air, swaying. Mark repeats the same. They are together. Afterwards, Mark asks "Wanna race?" Gregory looks at him and says, "Yes." And off they go. Then when Gregory suddenly stops and tunes into his inner world for a minute, Mark comes over and sits by him, and they are together, sitting still on the grass. And that is OK.

Mark is a true friend. I don't take that for granted. I'm thankful there is someone like this for Gregory. For kids with autism, it is hard to find and keep one true friend. When Mark was younger and still a toddler, I worried that Gregory would never find a real friend. It's hard for any of us, but moreso for children on the autism spectrum. In fact, they get an inordinate share of bullying, teasing, and are vulnerable to different types of abuse. Now I can see that his little brother is so perfect for him, and they play beautifully together, so that I can say that Gregory has a friend.

Mark is also like a natural therapist, by making Gregory pay attention to the game, the rules, the moves, whatever they're playing, bringing him back to engage with him again. And if Gregory doesn't right away, Mark is just fine with that and continues to tag along happily while his big brother leads them around the backyard. But Mark is persistent, and forces Gregory to play the right way, and by the rules :-) He doesn't give up, and he protects Gregory from danger too (pulling him back from the road, or our fence if he's trying to climb).

I feel that Mark is not only perfect for Gregory (and someone who most likely will be the one to watch over him when they are adults), but he is also a balm for our soul; and as any parents of children with autism know, our hearts/souls are tattered & broken when we first start out on this journey.

Weaned Off the Boob... Tube

We've implemented a new schedule at home for Gregory and the rest of the little imps running around here. NO TV until after bubble bath at 6:30pm. Period. Also, no COMPUTER TIME until after bubble bath at 6:30pm. Then, after the glorious bubbly water cascading over their pudgy bodies, they will arrive at their promised land, of watching 1 to 2 hours of their favorite program (nowadays, "Chuggington" on the Disney channel).

The result is what I would like to believe a direct result of turning off the boob tube. A whole lot better relating goin' on.

Just now I saw Gregory go over to his 3-yr old brother with a bottle of milk and say, "Here you go, here you go", then hand him the milk... Sounds like nothing but this is extraordinary. It blew my mind! Of his own volition, he wanted to give a bottle of milk to his brother!!!

Turn off the tv and computer, and let those synapses find one another in their mysterious dance of development.

Helping Sis Celebrate her 6th

"Stand Back", says Catherine. "I got it."

Couldn't find the regular little birthday candles, so we stuck one large one on there before the kids started eating their own digits.

Born 11 months apart, Catherine (January) & Gregory (December) share being 5 years old simultaneously for just a month in December. Now Catherine turns 6.

Thank heaven for little girls :)

The universal language - sugar

How It Ought To Be :)

My daughter Catherine's rendition of me when I'm happy

It happened again, Gregory stopped me in my tracks. This morning as the other kids were getting ready to file out & catch their morning schoolbus, Gregory stared into his older brother Luke's face intently and said "Luke", and started saying "nose", "ears", etc while looking at Luke's face. He also looked out the door and started labeling "tree" & "snow". He was a naming machine.

This was magical when you consider a year ago, you were lucky if he looked at your eyes directly for more than 1 second. It was almost as if your eyes were bright, burning suns that he must avoid, or your face was a giant magnet of the same polarity as his so that they only repelled eachother.

It's as if his brainwaves are starting to get better organized & new synapses are joining up.

THIS IS HOW IT OUGHT TO BE -- in between those long months of wanting to tear your hair out & wondering if all the work being put into him was working, some signs of improvement descend upon us, and keep us going.

We savor each shiny glimmery jewel of improvement, and put them in our pocket along the way.

Happy Mother's Day, January 10th

More juicy good news from the G-man front... Today I got an early Mother's Day gift -- you see, I had never heard Gregory call me Mommy before today. We were looking at a photo of me on Facebook when I asked Gregory, "Who's that?" while pointing to myself. He had never labeled me in pictures nor called me Mommy before, even though he knew who I was. I prompted him verbally with, "Mommy". After a few looks back and forth between the photo & me, Gregory begins spewing out "Mommy-Mommy-Mommy-Mommy!"

I've waited 5 years to hear those lovely words directed at me.

While still in a zone of incredulity, I got a little greedy and prompted him to say "I love you Mommy". He repeated it, laughing as if tickled by self-discovery.

Earlier in the day, he threw several more nuggets of gold my way after years of our prospecting in muddy waters:

* When I cracked open an egg & as soon as it landed in the frying pan to sizzle, Gregory goes "Wooooowww!", right on cue. Something about that observation-reaction sequence was so wonderful, so normal -- a departure from the directionless jargon, singing & chattering that you might get from him.

* When he came to me to see if we could go to the basement to retrieve some yogurt in the fridge down there, I said NO since we were out of them. ...Pause... "What about chips?", he says. Shazam - I couldn't believe it; where'd he pick up that to say??? He'd usually just echo what I last said, not formulate a whole 'nother sentence.

* He usually engages in parallel play with his brothers & sister, and only plays "with" them if they spontaneously get up to run or play tag, or some other physical game. Today he played catch with his sister, throwing the ball to and from each other. Pure simplicity. To the untrained eye it was as ordinary as air, but to me, it was significantly different -- there was literally a back-and-forth element to this type of playing. Beautiful to behold. Nevermind that the video clip I captured of him doing this shows he is completely naked after his bath. :)

Well it feels like we're starting to amass more & more of these instances, like little flecks of gold or precious metals, enough to be able to solder into a growing chain.

Happy Mother's Day to me :)

Oh, Happy Day!

Gregory has stunned me recently with some long-awaited leaps -- it feels like we've come across an unexpected water fountain after 40 years in the desert.

It may not seem like much on the surface, but Gregory & I had our first conversation. Keeping in mind that he started out non-verbal, then had just a few single echolalic words, then a very long phase of saying "I want ___", and not much else, the "conversation" we had was so completely different because for the first time it was a true exchange.

* I wanted G to go upstairs for his bubble bath but he refused multiple times, saying "No." Somehow I got him to walk upstairs but he still refused to go into the bath tub. After a while, and all of a sudden, instead of repeating "No" over & over, he suddenly said, "Bubble bath, ...Lollipop?" It floored me when I realized he was saying, If I take a bath will you give me a lollipop? As soon as I said YES, he ran to the bath tub, and as soon as he was done, I immediately handed him a lollipop. Oh, happy day! (Play Etta James' "At Last" here).

* The improved communication goes on with other incidents. Even though his sentences are not complex, they show a seismic leap in the quality of his relating. Before, he was content to be "in his own little world" and speaking with just "echos" of what you said, or going to you just for help in obtaining a desired item w/o truly communicating in the full sense of backs & forths.

* Last night when seated around the dinner table, I had started doing high-fives with two of my other kids when Gregory all of a sudden lifted his hands in the air, looking at me to do high-fives with him. It was beautiful. He was a part of the group & wanting to do what we were doing. Another sign of Gregory making a leap forward.

* This morning as he got on the schoolbus, the new bus driver said "Good Morning". Gregory broke his usual tradition of being silent and shouted out, "Hellooooooooo!" & then "Hi !!!" to both ladies in the bus.

When you have a kid that's developing typically, as my other three children are, you really take for granted these little things. Gregory has been working very hard for the past 2+ years with much help & support, so it's breathtaking to witness the baby steps & leaps above, and to contemplate his full potential.

Like all kids, those on the spectrum can & will surprise you. :-)