Saturday, May 29, 2010
Sunday, May 23, 2010
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...
Now that's REAL INCLUSION!
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!
INCLUSION IS A BEST PRACTICE! INCLUSION RESULTS IN THE BEST OUTCOMES FOR OUR CHILDREN WITH SPECIAL NEEDS. INCLUSION IS THE WAVE OF THE FUTURE THAT WAS MEANT TO BE IMPLEMENTED TODAY! Is your school district practicing inclusion according to the Federal laws?
Saturday, May 22, 2010
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...
 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.]
 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.]
 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.
 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!
 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
 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!
 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!
 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.
 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!
 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
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!
Saturday, May 8, 2010
~ Oscar Wilde
(copied from the website of Rainbowland Autism Services via Just Show Up: Autism Rainbow).
Friday, May 7, 2010
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):
 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!
 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!
 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.
 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!
 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
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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