Saturday, May 29, 2010

What Have I Become In My Rush to Get Where I'm Going?

Canadian Geese crowd the Old Soul's schoolyard (taken from the car window at dismissal).

I am by nature a nature lover and animal lover. I thrive and feel the greatest peace when I'm immersed in and mindful of nature, surrounded by animals. For me, a 5-Star hotel can't hold a candle to the great outdoors.

Sadly, I'm finding lately that life's pressures -- just taking care of business -- sometimes get in the way of being one with nature and all of God's creatures. Fixing my house, driving my kids, writing my blog, advocating for people with special needs, putting dinner on the table, catching up on email, etc. are all things I choose to do. And while that IS a good thing 'cause they all HAVE TO get done there's important stuff that I'm not attending to. All these tasks that have to be done crowd out most of the opportunities I have to enjoy the beautiful world around me. I forget to take the time, to make the time, to attend to the natural world!

And I've been suffering terrible guilt the last several days as a function of my lack of focus on this gift of nature.

Running between school drop-offs, doctor's appointments, CPSE meetings, food shopping, cleaning the house, folding the laundry, and then after-school pick-ups, therapy schedules, after-school activities, and maintaining bath- and night-time routines, etc. I neglected one of God's creatures. Driving along the Cross Island Parkway on the way to picking up the boys, I saw one of those beautiful tan and black Canadian Geese stuck on the roadside edge of the guardrail. Panicked because of the heavy, fast-moving traffic the goose was trying to get himself over the rail but did not have the luxury of take-off space which, if you've ever watched a goose take flight, is critical. He couldn't fly over that rail and he was about 75 feet from the exit ramp where he could clear the roadway and get safely back in the grass. As I passed in the fast lane -- 2 lanes between me and that graceful animal -- I was torn between stopping and trying to help -- I could try to redirect the traffic away from that lane (potentially quite dangerous) until the goose was safe -- and moving on to pick up The Boys from their preschool on the north shore by 2:30 and getting back to the south shore to pick up my Old Soul from her school at 3:05. I didn't want my anxious little girl standing in the schoolyard alone and feeling abandoned by her mother (as she is predisposed to do). If you're from Long Island, you know that successfully making such a trip in the short amount of time I have is no easy feat. I struggle daily to do so and often fail. But on this day, I watched that goose, and felt his terror, and did nothing as he faded from view in my rear view mirror. Even as he disappeared from my sight, I went on worrying all day and all night about whether he made it; angry at the drivers who whizzed past him with complete disregard for his safety. Minimizing the importance of his life. After all, he's a HUGE Canadian Goose in the middle of a vast parkway. TOTALLY visible. No reason to hit a target like that.... Every opportunity to avoid such a collision. I considered doubling back and attempting to herd him towards the exit ramp but dismissed that thought as I might actually drive the poor, lost animal into traffic and to his death. I rationalized that he was close to safety and intervening might spook him... so I should leave it alone. I copped out!

The sight of him panicking as he attempted time after time to fly over that guardrail haunted me all day and night.

It wasn't until the next day as I was once again picking up The Boys from school that I learned that beautiful bird's sad fate. He'd made it all the way to the exit ramp when some uncaring, unfocused driver (probably on a cell phone) cut him down when he was so close to safety. His beautiful feathers matted with blood and long slender neck bent and broken unnaturally, I saw his once sinewy body laying still in the gutter. I cried! I'm crying now! Why did I choose not to take the 5, 10 or 15 minutes it would have taken to stop and help that goose? I might have saved his life! It occurred to me "he" might have been a mama goose with eggs or goslings in the grass. It occurred to me that I did the WRONG thing by justifying my lack of attention to the immediate needs of that beautiful creature in favor of moving through my busy little life and attending to insignificant tasks compared to saving his life. The Boys were safe at school. They could wait another 15 minutes. The Old Soul and I have a plan that if I'm not there AT pick-up time she should go to the playground and play with her friends under the watchful eye of several parents who know to keep an eye on her until I show up a few minutes late if traffic delays my arrival. I could have helped that goose. I might have saved his or her life.
One of God's beautiful creatures perished because I was too busy to do the right thing! THAT is not my nature. I had to actually ignore my nature, my heart, everything my mind and body were saying to me to drive past that graceful but frightened bird and not take action!

I'm sick over my poor judgement. When did I become so callous to think that my ridiculously over-burdened schedule (all my own doing) was more important than another life? Ah, but it was just a goose, you say? When and how did we humans come to the conclusion that we are more important in the grand scheme of things than any other life form... than a goose? I think it's this self important, greater than thou mentality in our society that is at least part of what's wrong with the world these days. People have little consideration for any one else. Their mission is more important than everyone and anyone elses. Special education committees make decisions based on budgets instead of childrens' needs. People fail to hold open a door for someone behind them because they're in a rush to get to that appointment all of 10 seconds sooner. Drivers fail to yield because getting to their destination is more important than common courtesy (never mind driving laws). Frankly, I'm embarrassed that I did not do the right thing as I have always tried to live my life (and teach my children) to do just that... the right thing! Even when it's harder. Even when it's not convenient to do so. But in this instance I consciously chose not to do the right thing and one of God's creatures lost it's life because of my apathy.

I promise you -- and, more importantly, I promise myself -- this will not happen again!

Sunday, May 23, 2010

REAL Inclusion And the Least Restrictive Environment Law

I sat in on a meeting as a Parent Member of the Committee on Special Education (CSE) with the shared responsibility of making decisions pertaining to the education of a child in my town. For privacy reasons, I'm NOT going to share anything specific about that meeting or that child but I am going to share an AHA! moment that knocked me upside the head during the opening remarks of the meeting and was then revisited and reinforced throughout the meeting... FOR ME. I'm not sure that the other committee members saw the light bulb glowing over my head. You see, my role in the committee is slightly different from the other members. Everyone else is there to report on the child's progress and services. I am there because, to some degree, I walk in the shoes of the child's parents... but (perhaps) can listen and respond less emotionally because we're not deciding the future of my child. In this role, I can ask questions or make suggestions that the parents may not have thought of. In theory, it's not personal. In reality, whoever said that wasn't a parent of a child with special needs... (LOL) IT IS ALWAYS PERSONAL!

For the record, EVERYTHING I do that involves children with special needs is personal. I have 2 children with special needs. Every piece of information I gather and apply either to my own children or to another parent's child is done to make their world a better place. And the more parents of children with special needs I can help navigate the world of special education in our district and state (in whatever way I can), the better off their children -- and therefore my children -- will be in our schools, community and world. So it is, in fact, very personal!

My AHA! Moment? The Dad mentioned that he'd had the good fortune to attend a particular school known for naturally integrating the local children with special needs in with the general population in their schools and community. He found the experience extraordinary. Recalling that even the most unlikely "typical" student was automatically and outright helpful to the children with special needs. Everyone benefited.

To which I responded in agreement...


I've always considered myself a REAL inclusionist! My life has always been intertwined with children/people with special needs. As a second-grader, my dear friend, Alex, was wheelchair-bound due to Cerebral Palsy. I played constantly with him and his little brother, Vinny, who had a learning disability. Most of my childhood was spent on the "dead end" street around the corner with my life-long friends, Alison and Kelley, whose Aunt Carole had special needs and often joined in our tea parties. And, Uncle Stevie lived with my cousins and spent countless hours playing Cowboys and Indians with us. At 15, one of my most enjoyable "baby"-sitting gigs was being a companion to Johnny, a brilliant teen aged boy who happened to have been severely physically affected by Cerebral Palsy (but unaffected cognitively). I can go on with examples of people with special needs being really included in my life, throughout my life. Seems I've always been naturally enmeshed with people who were differently abled than I. It was natural for me then, to expect that this is how the world is -- integrated -- with people with special needs fully INCLUDED in all areas of life. Then I had my own children with special needs -- my identical twin sons who happened to have been born with Down syndrome! I have known from the start what I wanted for them... The research shows that full-inclusion in all aspects of life -- school, community, workforce etc. -- produces the best, most successful outcomes socially/emotionally and academically... spawning the greatest level of independence possible. As such, I've consistently followed the inclusionist path and the inclusionist advocates' and experts' advice and mindset. That said, I'm not sure why this particular meeting's underlying inclusion theme shook me down to the very foundation of my soul. I guess it pushed the concept of REAL INCLUSION right in my face... a little boy who needs, yearns for, and thrives on being included in his school and community... BUT WAS NOT QUITE THERE and he knew it because of the way the school district does "inclusion"!

The Boys marching in their Thanksgiving Parade at their integrated Preschool. Not quite full inclusion but they are being educated side-by-side with some of their typical peers.

A child who recognizes that he attends a different school than his siblings because he's "different"; A child whose friendships don't include the kids who live next door or around the corner because they go to the neighborhood school and she doesn't; A child who rides a different bus... the "short" bus; or goes to a separate "special" class where all the children have disabilities -- usually in a far wing of the school -- is NOT INCLUDED! They are being segregated. And the process of segregation and the thinking behind it is pervasive. Someone at my own CPSE meeting actually said TO ME [when erroneously trying to sell me on the self-contained class they recommended for my boys], "It's so cute, they go down to the cafeteria at lunch time and eat with the REGULAR KIDS!" (I'm sure you can imagine my reaction!) Maybe they LET your child participate in Art or Music class with the general population. Maybe they mainstream (different from inclusion) for story time only and then send the child with special needs back to his/her segregated class. This thinking, these practices are why New York state continues to lag behind 48 other states in our nation that are implementing the inclusion laws. Why NY continues to separate people with disabilities from those without despite the laws that require them to do otherwise. This is NOT inclusion, it's discrimination!

Just because Johnny or Jane learns differently from Tommy or Tess doesn't mean they shouldn't be or can't be in the same classroom. As a corporate executive, I was responsible for understanding the individual learning styles of each of my employees and using that style to facilitate their career path and growth within my department, employed by our same company, living and operating together in our shared world. INCLUDED regardless of their learning style. Why should it be any different for a child in school? I didn't fire all the visual learners because they didn't listen to me or catch on during trainings. I bought them books so they could learn their way what they needed to learn to do their jobs well. I didn't sit my employees who learned by watching in the corner with a book. I assigned mentors (read: peers) to show them how to do it, to facilitate their learning. I provided individualized support for each person according to their learning style! In my 20-year career as a database marketing executive, I managed to teach and forward the careers of every employee I ever had. Never terminating a single employee.

The Federal Least Restrictive Environment Law was developed to accommodate inclusion whenever and wherever possible. The law states (my accurate paraphrasing) that a child with special needs should be educated side-by-side with his/her typically developing peers in the least restrictive environment where he/she can make academic progress with appropriate supports in place. The law exists because the research supports INCLUSION as the best practice in educating children with special needs. The best outcomes are reported when children with special needs are fully included. The problem is that school districts are left to interpret the law, to determine what level of support is appropriate which, unfortunately, becomes a matter of convenience (easier to place them in the existing special needs class than to put together an individual support-infrastructure in the general education setting) and budget (schools receive funding for each child placed in a "special" class supporting on-going segregation) versus what is BEST for the child. Their interpretation continues to support the antiquated infrastructure and segregated thinking ignoring the research that supports the inclusion laws!


Saturday, May 22, 2010

Every Day Is a Good Day To Be Thankful!

I've been remiss in posting. I'm not sure any of you miss it so much as I do. My ability to handle what the world throws at me dwindles when I don't get things off my chest and, more importantly, when I forget to stay focused on all the beauty in my world. I have so much to be thankful for. Sadly, I'm human and sometimes neglect acknowledging all the good stuff in favor of dropping to my knees and screaming, "I can't take anymore!"

You see, I take on too much and I'm a procrastinator at heart. I try and counter these tendencies by doing everything just as soon as it's presented for doing.... read: NOW. I know, of course, that it's not possible to sustain this practice or mindset indefinitely so, inevitably, I crash. And I've been crashing lately. All the things that need to be done that I'm not getting to -- in favor of the more important tasks like caring for my children and being involved in their lives -- are weighing heavily on my mind. And, my mental health and house are suffering for it! Generally, I'd spend what could have been a rejuvenating mental health weekend trying to catch up on the housekeeping... TRYING and marginally succeeding before inviting our "regular" life back in... And the cycle begins again.

Then something or someone reminds me by telling their story -- either about how much cr*p they're going through or how thankful they are for the blessings in their lives -- and I get hit with a 5 ton brick of guilt. My moment of questioning why I feel so overwhelmed is inevitably followed by a good soul cleansing that only thankfulness affords me.

That's when I know I'm on the right track again... I just have to keep reminding myself that it feels good even though it appears, on the surface, like one more unnecessary thing on my to do list. (Kinda like exercise! LOL). Anyway...

[1] The boys are having their potty epiphany... At age 5 (and not a moment too soon with Kindergarten just around the bend)! I was beginning to think my Potty-Epiphany method of toilet training might not be possible for my identical twin boys who happen to have Down syndrome. Shame on me for ever thinking that my extraordinary boys, blessed with an extra 21st chromosome, might never have the potty epiphany.... Proving true once again that children with Down syndrome can do everything any other child does but they do it in their own time and in their own way. So, 5 is the magic number for us and I'm potty training. I'll let you know how it goes...

[Hold on, the 20-minute timer is going off. Gotta go put them in front of the potty.]

[2] I've been yelling a bit too much today and it's not making me feel very good about myself or my parenting skills. Why? You ask. Because my Old Soul is being 8! She has some nerve acting her chronological age instead of her old soul's age. Not doing what she's told and then complaining when my ignored advice turns out to be just what she should have done. It's no fun being ignored. But it does prove that she has a mind of her own and she is willing to risk everything to use it. That bodes well for her future... My present? That's another story.

[Needed a nice-sunny-day break but I'm back after taking the kids for a visit with Grandpa in the nursing home, a jaunt on the playground and a walk at the Nautical Mile waterfront.]

[3] Yes, we're just back from taking the kids to visit my Dad at the nursing home and I'm feeling pretty lucky to still have my Dad to joke around with. That's more than many of my friends can say. Though he's drugged and deteriorating -- succumbing to the evils of Alzheimer's and the meds necessary to control his sun downing behavior -- he still recognizes us. He lovingly kissed The Boys' imaginary boo boos, played that pull-your-hands-away-before-I-can-slap-em game with the Old Soul and demonstrated his warped sense of humor is still in tact in between momentary drug-induced naps. He's alive and kicking [though barely] and I'm glad for the few moments of pleasure I witness as he plays with his grand kids. Needless to say, my Catholic guilt comes bubbling to the surface when I miss several weeks of visits when my crazy ol' life gets in the way, but his lost sense of time makes him think we've just been there the day before... even if it's been several weeks since I've come. It's hard seeing him like this. But, I am glad he's still here.

[4] The nice weather is finally, hopefully, seasonally upon us to stay, I think... and pray! That's important because it's a surefire way to lift my spirits. I LOVE to be outside with the sun shining in my eyes, feeling its warmth on my skin, going for a run-walk in the neighborhood, gardening. Hitting the beach, jumping in the pool or runing through the sprinkler with the kids. We go to church carnivals, street fairs and medieval festivals (goofy but we LOVE them!). I'm committed to getting back into kayaking and SCUBA diving this year (I promised The Old Soul she could give the latter a try.) More daylight hours, less coats, warm days and cool nights, no school (at least for the Old Soul). Oh, the potential for fun is endless. Yeah, Summer's in the house! Woot Woot!

[5] I know this sounds trite and I know every mom must feel this way at least 99.9% of the time. But I've got to say it... I've got the best, most amazing kids. Seriously, they're growing up big and strong and healthy. They're gentle and kind and loving (except when they're really tired, like right now, LOL). They're learning, progressing and becoming beautiful little men and woman right before my very eyes. They blow me away! I am in awe of each and every one of them... with their understanding of the world and the consistent love they have for all living things all demonstrated in their own unique way. I am truly blessed!

May I never take any of these extraordinary gifts for granted.

Friday, May 14, 2010

TGIF and Other Thankful Thoughts

OK, so how's this for original... Instead of posting what I'm thankful for on Thursdays like everyone else in the blogosphere, I'm going to do it on Fridays and call it "TGIF and Other Thankful Thoughts". LOL! Here's where my thankful thoughts are taking me tonight:

[1] I'm thankful that The Boys' birthday 5th Birthday party is finally upon us. Though there's a lot of work yet to be done, I'm certain that we'll end up with a beautiful day and a reasonable number of guests to join us singing to ABBA and Alvin & The Chipmunk Karaoke-style tunes. It's gonna be waaaay fun!

[2] I'm grateful to all the people in our lives who totally accept The Boys just as they are. Their friends are their friends because they truly LIKE The Boys. Completely unsolicited, several of their classmates -- did I mention they're in an integrated preschool class -- have asked if they could have a play date with The Boys at our house. One child said The Boys are his "favorite school friends". And two others said they like my beautiful little men because they're "ALWAYS so nice to me...ALL THE TIME!" At 5, it's a pretty big and positive impression they're leaving on their classmates... their friends!

[3] I think our friends are our friends for the same reasons... We do really good play dates and try to be nice to people. That last part might be one of the 10 Commandments -- goes something like "Do Unto Others As You Would Have Others Do Unto You". OK, that's not verbatim and maybe it's not a commandment but it's a really good rule to live by. And I hope my friends know that I am grateful for their friendship, support, camaraderie and laughs... especially the laughs! May I be as supportive of each of you on whatever journey you're on at any given time as you all have been to me.

[4] By the grace of God, I'm thankful that my house didn't catch fire and burn down (some of this 2oo+ year-old lumber would go up like tinder) when the light burned out in The Old Soul's fish aquarium night-light lamp last night. The strong smell of burning and smoke woke me and I turned off and unplugged everything I thought might be the cause. Turns out, those swimming fishies and that little light put out a lot of heat... which could have been a much bigger problem than it turned out to be. OK, so I learned the aquarium is not the best "night light". I'm incredibly grateful to have learned this something new "the easy way" instead of the hard way. BTW - that reminds me: change your batteries in your smoke detectors! Ours was inadvertently disconnected for construction and never hooked back up again. NOT good!

[5] And, finally, I'm beyond grateful to my Yahoo Biggest Loser Challenge 2010 group. With their constant support, motivation and inspiration I've managed to lose a little of myself (9 lbs so far). If I do that 3 more times, that'll be a total of 36 lbs gone and I'll almost be at my goal weight. I know with their help, I can do this! Psyched!

There's so much more I'm thankful for but I'm incredibly tired and have a BIG, FUN day ahead of us tomorrow. Take a moment to think about what you're really thankful for. A grateful heart is good for you!

Thursday, May 13, 2010

Chutes & Ladders

The Boys' PT at school thinks they can't climb up a 4' hard-runged rope ladder!

I know they can do that and a WHOLE LOT MORE!

The Boys were up and down those Chutes & Ladders keeping up with kids who were bigger and older -- but not any more able -- than they are! The Sarge and I were so proud of them!

Believe! No one can know the limits of another!

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Saturday, May 8, 2010

Quote of the Day!

Run your fingers through my soul. For once, just once, feel exactly what I feel, believe exactly what I believe, perceive as I perceive, look, examine, and for once; just once, understand."
~ Oscar Wilde

(copied from the website of Rainbowland Autism Services via Just Show Up: Autism Rainbow).

Friday, May 7, 2010

TGIF and Other Things I'm Thankful For

It's been awhile since I did my Thankful Thursday post... That's because I was advised that it's not "effective" blogging to copy everyone else in the blogosphere for post ideas. In truth, I think we're all thankful for vaguely and/or drastically different things depending upon our specific experience any given week. That said, I'm here to remind myself of all the good things going on so that all the tough stuff doesn't get me down. I apologize if this isn't "effective" for you... But, as this is my happiness project and it helps me immensely to dwell on the positives in my life, I NEED a "Thankful Thursday" post... even if it's Friday!

Matter of fact, "THANK GOD IT'S FRIDAY!" because I'm not sure I could take another weekday this week. No, you won't find me dwelling on the happenings that brought me down this week... though from my list of things to be thankful for, you may be able to guess (LOL):

[1] I'm thankful that my boys are NOT allergic to dairy. We spent the first 2 years of their lives dairy- and soy-free -- myself included since I nursed them -- because they had allergic colitis due to their 8-weeks-early births. Bleeding intestines are no fun. Neither are irritated bowels -- for me or for them (read between those diaper changes)! Strained from too much dairy... so ends the birthday tradition of Carvel ice-cream cakes in our family. I'll take "sensitivity" over allergy any day of the week!

[2] I am beyond thankful that The Boys are MY boys and that I get to raise them as I see fit. They're doing WONDERFULLY growing up big and strong and healthy so I must be doing something all right! That said, I am not an extremist at anything much and so living life anything-free is not really my gig. I do not knock others for going gluten-, soy- or dairy-free nor, I hope, should others knock me for NOT doing it. Variety is the spice of life and it's a spice I love!

[3] I'm grateful to Dr. Raina at NorthShore LIJ who took a chance first on changing, then dropping, my dear aunt's blood pressure meds. Granted, it's only a test during which she'll be closely monitored. But, she's been so many years on the meds that everybody's taken for granted that her blood pressure is high and continued the meds without question. Her 5-day stay in hospital for tests ended this week and did not demonstrate high blood pressure at all. As a matter of fact, she was admitted for extraordinarily LOW blood pressure, dizziness and fainting. We've long suspected that the meds she was on were causing other problems. Perhaps now we can get to the bottom of it all. Thanks Doc for stepping outside the comfort zone and actually listening, seeing and treating the patient as an individual.

[4] Oddly enough,I'm grateful for all the testing my very typical now 5-year-old identical twins who happened to have been born with Down syndrome have been perpetrating against me! Yes, you heard right! I'm GRATEFUL! Because if they're testing, they're understanding the rules and they're understanding that what they're doing [tormenting me, truth be told] goes against those rules. Testing also means they're thinking! That they're cognitively capable! Something some people who don't know them quite well enough [but think they do] don't actually believe enough!

[5] Finally, I did HORRIBLY with my weight loss efforts this week. One might say I was on a weight GAIN effort instead.... 'cause that is what happened. Just the same, I'm 4 lbs less than I was when I started (though the "group" I belong to doesn't know that), I'm eating healthier (except for the cookies that helped me survive this week) and I'm actually getting in more exercise than I have in years (not enough but it's a good start)! So Brava for me that I'm NOT gonna get kicked by that horse! I'm gonna get right back on and ride off [thinner next week] into the proverbial sunset!

Signing off... grateful for another chance, another smile, another sunrise... with my beautiful children. I wouldn't have it any other way!

Thursday, May 6, 2010

The Goat Whisperer

Look what I discovered at White Post Farms...

My Little Man is a Goat Whisperer!

Despite having no food to feed them, all the little goats came to him for hugs and kisses while the other children stood down-pen with their ice cream cones full of pellets.

He approached this Fawn Deer and every other animal at the farm and was treated in kind. All of God's creatures came to my beautiful Little Man first... with no more to offer than his love and tenderness! It was enough, apparently!

Not surprising, really. He and his "Big Brother" are that way with people too!

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