Dwellings

He Ain't Heavy...

2011-05-27T12:49:00.008-04:00

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).

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

What Autism Is Like, Written By Someone Who Knows

2010-04-27T23:07:00.008-04:00

One of the best articles I've ever read that explains what autism is (and isn't) - "My Life With Autism" by Taylor Crowe.

http://www.semissourian.com/story/1629232.html

Please read if you have a child with autism, are a teacher of one, or just want to understand this growing neurological disorder and want to help. It's a little long, but worth it.

1 in 150 children (1 in 70 boys) has autism spectrum disorder (ASD). It affects our families and society, and touches us all.

Words So True

2010-04-20T15:15:00.006-04:00

The below is from the Group, "Parenting Children with Autism Spectrum Disorder" on CAFEMOM.COM, to which I belong, and drop in on, from time to time.

If you're sick of hearing about all the "deficits" challenging people on the autism spectrum, join the club. But for every down side to autism, there seems to be a positive -- an unusual trait that rarely appears among the "typical" community, but shines out among autistic folk. These pluses are well worth celebrating.

1. Autistic People Rarely Lie

We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.

2. People on the Autism Spectrum Live in the Moment

How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truly attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.

3. People with Autism Rarely Judge Others

Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.

4. Autistic People are Passionate

Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?

5. People with Autism Are Not Tied to Social Expectations

If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.

6. People with Autism Have Terrific Memories

How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.

7. Autistic People Are Less Materialistic

Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.

8. Autistic People Play Fewer Head Games

Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!

9. Autistic People Have Fewer Hidden Agendas

Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!

10. People with Autism Open New Doors for "Neurotypicals"

For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For a mom of a son on the autism spectrum that I read about on CafeMom.com, it has released her from a lifetime of "should" -- and offered her a new world of "is." That holds true for me as well.

Weaned Off the Boob... Tube

2010-02-26T16:19:00.004-05:00

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

2010-01-14T17:16:00.007-05:00

"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 :)

2010-01-13T14:17:00.013-05:00

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

2010-01-10T19:56:00.012-05:00

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 he said "Daddy - I love daddy" (which Phil had taught him recently) because Phil was in the photo also. So 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 while alternating with "I love you, Daddy" as he looked at our photo, 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!

2010-01-05T08:48:00.012-05:00

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. :-)

Black Socks & Sandals

2010-01-01T11:25:00.010-05:00

One of my favorite shots of Gregory, a couple of years ago when we first moved into our new house. Black socks & sandals - his grandfather would be proud. :-) And he's looking right at you - for a while that was the Holy Grail.

So here he is -- not headed for the Boardwalk at Coney Island to take the plunge with the Polar Bear Club into the icy Atlantic on January 1st !

HAPPY YEAR OF THE TIGER!

LEAN ON ME

2009-12-29T09:58:00.012-05:00

Today is a wickedly windy day here in Westchester. You almost expect to see Margaret Hamilton on her broom flying outside your window. The roar of the wind makes me think of how buildings & houses can withstand such stresses & forces, day in & day out. Architectural supports go back to the medieval age and have been passed down like DNA to builders across the ages.

Gambrel Roof

The Dutch in early NY used this style of roof -- you see it a lot on barns. I always thought the bent shape of the roof was unusual & complex, but it's actually not. Two sets of rafters allow for a greater amount of storage space inside, for example for hay. Tie beams (D & E) connect the two rafters (B & C) and help direct their weight down to the walls of the house. Yeah, love it... move the stress down & out!

The Arch

To support the tremendous weight of the arches, you had to provide a way of transmitting the force. The Romans achieved this with the Keystone Block. The force went down to the top of the Keystone and because of its shape, it then translated the force to the "voussoir blocks", and they in turn translated the force through the impost to the piers. Architectural stress management at its best :)

The Flying Buttress

Yes, we all snickered when we took Art or Architecture 101. The "flying buttress" transmits the horizontal force of a vaulted ceiling, such as in a cathedral, not to a supporting wall, but through it to a counterweight outside the building (now that's thinking out of the box!), so it seems like they fly through the air. If you wanted to keep the cathedral as eggshell-light & ethereal as possible, not heavy and grave, plus add stained glass windows for a delicate touch, then this was a neat solution to avoid thickened support walls while the spires stretched toward Heaven. The flying buttress simply redirected the stress, taking the "fight" outside.

How does this tie in with Gregory...

RESPITE CARE

The taller the walls, the harder it is for them to keep an arch from toppling, so they need to be wider, thicker. For caregivers taking care of young children with ASD, there is an additional supportive wall that not many know about, called respite care. It's a service you can apply for and is based on the recognition that these parents have very tall needs & heavy loads, and need more support.

They will come into your home, and the range of things they do is very wide... they can "babysit" and let you get a few hours of sleep, do your grocery shopping for you or run errands, anything to shunt away the stress for a while.

Undergoing what could be a third of your day of hearing full-blown gasket-blowing tantrums from a toddler or school-age child takes its toll. I have yet to apply for respite care due to lack of time, ironically. But it's said that not everyone can get approved for a variety of reasons.

Signing off, I can't leave out Gregory's favorite arches, of course -- also a great stress reliever for mom.

Sunday Sillies

2009-12-27T13:29:00.007-05:00

Phil made up the "dugga-dugga" game with Gregory -- simply, whenever you hear "dugga-dugga", you automatically get tickled. Mere anticipation is enough to send Gregory over the edge.

Whenever I feel the frustration of Gregory perhaps plateauing with the current skills he's supposed to learn with his speech therapist, occupational therapist, and pre-k teachers, I remind myself that we're in a good place -- his schools & teachers, speech therapist, occupational therapist & our family teacher round out the small army of people supporting him to succeed -- people & services I never even knew existed until now.

It's not lost upon me, however, that there are vast numbers of parents out there with kids on the spectrum who would kill to get this sort of reaction from their child. Many of their boys & girls may be completely non-verbal or unable to express affection despite the therapies and programs. If you know of someone with children on the severe end of the spectrum, please know that little things go a long way in making their daily burden lighter, especially encouragement to never give up hope...it's not impossible for older children to show improvement - it's never too late. Or perhaps a few hours of free babysitting to relieve them of the continuous care they must give would make their day.

When we were first starting out, I had so much anger & anguish that the mere sight of a therapist coming to our home to begin a session with Gregory (then 3 yrs old) was difficult to acknowledge & accept. As one of my favorite authors, Leeann Whiffen, wrote about on her own experience, just saying the word Autism out loud took a very long time, maybe a year or more for me.

Today, however, I know that when you have a kid on the spectrum, you come in contact with "a better class of people", working to fulfill a personal ideal of helping children & others improve their lives. They are a special bunch of people & we're blessed to have their help.

Friday Funnies

2009-12-26T10:11:00.006-05:00

Watching PEANUTS videos online with dad & little brother Mark.

Goes absolutely nuts when Charlie Brown shouts AAAGGH!, then trips to the floor after missing his football punt.

Gregory does a perfect imitation of that, including the tripping noise that sounds like a banana peel. :-)

JOY

2009-12-25T23:31:00.012-05:00

God Bless Charles Schulz :-)

Gregory responds a lot lately to Charlie Brown & the entire Peanuts gang. Just mention their names and he will look at you straight in the eyes & with an impish grin and laugh. Here he gets CB & Linus for Christmas.

Christmas Greetings

2009-12-24T09:58:00.008-05:00

MERRY CHRISTMAS, from Gregory :)

Hope you all have some great things lined up for today!

Wordless Wednesday

2009-12-23T05:28:00.004-05:00

Happy Birthday G-Man

2009-12-22T17:17:00.005-05:00

My husband writes Haikus on otherwise non-traditional Haiku subjects, such as the demise of GM or other news stories. The effect is sometimes hilarious, sometimes sublime. However, I am taking a page out of his book and writing one also, for no other reason than that it just came to me.

It's the question I pose to God regarding my 5-yr old Gregory, and the answer revealed to me over time.

WHY GOD, Autism???

"...It is a form of Beauty..."

"Must change Heart to see."

Gregory has been changing my heart to grow, enough so that I could at last see beyond the challenges & difficulties of a kid on the autism spectrum, and to realize that he is a kid first & foremost with a great laugh, smile, unbeatable hugs & snuggles, sense of humor, and he doesn't have a nefarious bone in his body (can't say that about many people).

Never mind that you'll find a lot of things lined up or grouped by color in our house. I for one can't pass a crooked painting on the wall without getting it level -- we all have our quirks. I have many deficits of my own that G-man has helped me realize and overcome.

In order to help him, he has brought me out of myself and into a larger purpose...

Love you, Gregory -- Happy 5th journey 'round the big ball of gas in the sky.

-Mom

Why DWELLINGS?

2009-12-22T15:30:00.009-05:00

I decided to start this blog today because, like many mothers out there with young children on the autism spectrum, it helps to have a place to write, share & ponder about our unique calling. We were chosen to serve as "mother-warriors" (coined by Jen McCarthy, as she herself is one) in a conscripted army that we never dreamed about.

The title "Dwellings" has a double-meaning for me -- as Musings resulting from my life as a mom of someone with ASD (autism spectrum disorder), and also as the Physical Structures we live in. My husband and I are real estate brokers. Dwellings, abodes, homesteads, pads, shacks -- we broker the physical "context" in which people build their lives.

Before there was moveable type & mass literacy, architecture was the primary vehicle for expressing our ideals, philosophy, wishes, needs. Just look at the stone Cathedral in Chartres, France...or any cathedral. It embodies the philosophies, ideals & priorities in the lives of its contemporaries. Planning, muscle and time were no obstacle when it came to turning their lofty goal into reality, sometimes even a lifetime.

The analogy is a simple one to make with our own personal striving, working and driving ourselves every day to overcome what seem like almost insuperable obstacles when trying to help our children on the spectrum improve.

The song by Bill Monroe, "I'm Working on A Building", comes to mind... in the end we're working on the temple of our selves.

I hope to never let my motivation wane, never give up...

For Gregory,
-Mom