Sunday, January 31, 2010

Down Syndrome Awareness Meets Random Funny Thoughts -- Spider Man & PROMPT

My husband is not a real touchy-feely, let's-talk-about-it kind of guy. Rather, I've come to learn that he's a man of few words. But, early in the process of dating him, I didn't know this and, I think, he was working hard not to expose his secret identity too soon since I'm both touchy-feely and loquacious. So, when I asked him to tell me something key about him that I would not otherwise find out easily or quickly, I'm sure he cringed inside. But without hesitation he said, "I'm Spiderman!"



GREAT answer! (LOL) That might have been the moment I knew he was THE ONE. After all, it's not everyday a girl gets to kiss Spiderman -- upside down or otherwise (Have you seen the movie?) -- or to snag a guy with a great sense of humor in her web!



I've never forgotten his response nor let him live it down. And I've told my children that story more than a few times. Of course, like me, the Old Soul thinks it's hysterical that her Daddy is so witty... if not really Spiderman. But, we'd never gotten any reaction from The Boys, although they know and love Spiderman ALMOST as much they love their Daddy.



As you may have heard, The Boys recently started their at-home PROMPT language therapy services awarded at their last CPSE meeting. Though this method is predominantly touted for children with apraxia, it can work wonders on children who have oral-motor processing delays and low oral muscle tone. That pretty much describes us... and many kids with Down syndrome... and some without too! Well, with just two sessions under their little belts, -- by all counts, in school and at home -- their language and articulation began to explode. Some of this, I'm sure, is just The Boys remembering skills they'd previously acquired. In their past Early Intervention life they'd consistently received PROMPT but had forgotten much during their hiatus (their preschool doesn't offer it which is why we fought for home services). Some of the explosion can also be attributed to the application of their newly recalled skills to their newly acquired vocabularies. And, apparently, some is the application of their new language skills to the existing thoughts they were previously unable to express. Very cool!



So when Daddy came home from work the other day to the usual fanfare, to stimulate language -- as I am ALWAYS doing with them -- I asked my Big Little Man what Daddy does at work. And he answered with great pride and conviction:



"Daddeee ith Piderman!"



AMAZING and pretty close to the truth. He does spend his time catching thieves just like flies.

Angels Amongst Us -- Through The Wires

I dialed a wrong number yesterday. You know, I realized today that this doesn't happen often with all the phone book options embedded in the telephones these days. I dialed my cousin to find out how HER ailing Dad is doing and to fill her in on how his brother, my ailing Dad, is doing. But I neglected to dial the "1" to get out of my area. So my call went local and my cousin's area code became the first 3 digits of my wrong number... and so on. The phone rang and rang and I thought, "how odd that she doesn't have her answering machine on" when the mechanical voice interrupted and said, "your call to 516-860 blah blah blah could not be completed." 516? Oops. I was trying to reach Connecticut. So I hung up and prepared to dial again when my phone rang and startled me. It was 516-866-blah blah blah asking me if I'd just called her.

"I did but I dialed incorrectly. I'm so sorry to have bothered you. Just a wrong number!"

To which she answered, "There are no wrong numbers. I have had many wonderful conversations with people who never meant to dial my number. But, I won't keep you. I hope you have a wonderful day! As a matter of fact, I hope you have an absolutely WONDERFUL life! It was nice talking with you. And remember, smile at everyone you see today. It'll bring you both joy."

I wished her the same. Thanked her profusely for her well wishes, returned them in kind and hung up... hesitantly.

A little crazy? A little bubbly? A bit odd? Sure! But it made my day! Honestly! With all the stress and emotions racing through the veins of my life right now, a pleasant and sincere wish for a positive outcome was a blessing. A blessing this woman bestowed on me, a perfect stranger. I think I'll save her number into my phone book and call her again today ;o).

In the meantime, I think I'll wish the same to the next person who unintentionally dials my number. Then, I'll take her advice and smile at everyone I see today.

Thursday, January 28, 2010

THANKFUL THURSDAY - Here Comes That Overwhelmed Feeling Again

Isn't life just too crazy sometimes? Seriously! My life feels overwhelming just now what with my Dad's illness, the boys' transition to kindergarten, impending re-surgery for the boys, job possibilities to consider etc. etc. etc. blah blah blah. Right? We all have these tangled webs, these unmade beds. My webs are certainly tangled... not from lying, as the old proverb goes, but from LIVING! And these days, the beds in my house are all rather unkempt! I personally hate getting into an unmade bed... but here I am! My Grandma Bea used to say, "you made your bed, now lie in it." And so I do! I love the bed I made for myself. Truly. I wouldn't trade any of this for the world (though I might switch around the timing). This is the life I was gifted and it's wonderful. It's just that in our lives we don't get to choose when the proverbial [stuff] hits the fan. So, along with my unmade beds there's a tornado blowing to boot.

Fortunately, I do get to choose how I deal with the resulting chaos. I could hide under that unmade bed and ignore it all or I can make decisions, take action, move forward, be proactive. So that's my tact:

[1] I'm grateful for my computer and the Internet that puts so much incredibly pertinent information at my fingertips making it easier (note: I did not say easy) to find supporting research to help me make the most apropos educational and therapeutic decisions for my boys... who, for those of you who don't already know, happen to have been graced with an extra 21st chromosome. Having the research and knowing the law is half the fight. (The other half is convincing the committee.)

[2] I'm thankful to the decision-makers who selected me to participate in an extraordinary [and free-to-me] 2-month Lay Advocacy training program offered by the Long Island Advocacy Center so that I may better learn and apply the federal and state laws governing special education as I pursue the best course for my beautiful children and help others as they choose their best course.

[3] I'm also thankful to be thought valuable and knowledgeable enough to even be considered for a job helping others apply the laws pertaining to special education as they navigate through the labyrinth that is their school system in pursuit of appropriate services for their children with special needs. Bad timing for me but I'm honored to have been considered. Until my timing improves I'll have to go on advocating as a lay person.

[4] I'm unbelievably grateful to have the choice NOT to work right now in favor of focusing on my children, and my crazy unmade beds and the coinciding windstorms.

[5] I wish I could spend a few hours relaxing in a hot spa-tub full of bubbles with dimmed lights and a flat screen TV playing a mindless romantic comedy to lose myself in. Mind you, there's no way any of that's going to happen any time soon (not to mention the fact that I don't have a spa tub and there's no flat screen TV in my bathroom... LOL). That's why I am incredibly thankful for the luxury of my hot, daily, 2 1/2 minute shower and every moment of warm and cozy sleep that I manage to steal at night. That's as close as I'm gonna get to the above dream... and I am ever so grateful for it!

Wednesday, January 27, 2010

Special Exposure Wednesday -- Boys Will Be Boys


The Boys find a new use for their bath-toy suction cups!

Tuesday, January 26, 2010

Random Funny Thoughts -- It's As Plain As The Nose On HIS Face

It's been awhile since I told an "Old Soul" story. She is laugh-out-loud funny with her straight-forward observations and commentary on the crazy world we live in. Yesterday, she just plain old cracked me up.


I brought my dear old Dad with me on my school pick-up rounds (as I sometimes do). Usually, I'm running "just-past-the-nick-of-time" and make it to her school 2 minutes post-dismissal. This actually works out well because the Old Soul typically brings up the rear in her class (she moves slowly... I just do too much) and I end up pulling into a newly vacated parking spot -- previously taken by a parent who lives their life in early or on-time mode (which is not me). I barely come to a stop right in front of the door as she walks out. It works well for us! However, inexplicably, yesterday we got to the school a bit early and couldn't find a parking space close to the door so I had to park down the block. I left Grandpa in the car with the boys and ran out to get my little Hippie Chick (aka the Old Soul). As we headed to the car happily holding hands and skipping (yes, both of us), this exchange ensued:


O: Did you leave the boys in the car all by themselves?


M: No! I'd get arrested for that. You're not allowed to leave little kids alone.


O: Are they at home?


M: Nope. They're in the car waiting for you!


O: Who's in the car with them?


M: Who do you think?




Nearing the car you could barely make out the vague image of someone in the front passenger seat. She immediately started laughing.




O: OH, IT'S GRANDPA! I CAN SEE HIS BIG OLD NOSE THROUGH THE WINDSHIELD!




She's right! Broken 7 times playing football in the pre-face guard years, his "big old nose" DOES stand out... giving the phrase, "it's as plain as the nose on your face" a whole new meaning in our family!




Sunday, January 24, 2010

Down Syndrome Awareness -- The Science of Learning in Children with Down Syndrome

I'm the first one to reassure parents that every child is different (despite sweeping diagnoses). Each child has their own unique areas of strength and weakness. Each their own learning style. I should know, right? I have identical twins with Down syndrome and they are all but identical when it comes to their strengths, weaknesses, interests, personalities and even learning style. BUT (because there's always a but), they do both have Down syndrome. And the very definition of a syndrome is a group of common characteristics typically found in those belonging to the "group". So, yes, it's true. There are similarities across people in the Down syndrome population.


Grouping people together by characteristics and then scientifically studying their behaviors, strengths, areas of weakness and reaction to various interventions as a group -- is one way to find effective treatments and methods for medical, physical, emotional and educational dilemmas that group faces. It's called research! Scientists may also choose to study an individual within the group and then apply their learnings to the group to see if their assumptions stick. It's all of this research -- years and years of proving over and over again that a particular solution is effective for the group, in general, and worth trying on the individual member of the group to solve whatever question the research was conducted to address -- that changes the way we treat those individuals going forward.


So, I turned to the research to prepare for my recent parent-requested (read: I requested) CPSE meeting to address my boys' lack of progress in the area of speech and academic achievement. And I came across a significant body of evidence discussing common learning deficits found in children with Down syndrome. I found research as early as 1983 explaining that around the age of 5, typically developing children naturally begin to use an internal rehearsal mechanism to acquire and store information in short term memory and then with additional rehearsal and organization to transfer that information into long term memory and, ultimately, into permanent knowledge. However, it was demonstrated that children with Down syndrome have a tendency to NOT automatically implement this rehearsal mechanism thereby having difficulty transferring and committing new information into their long term memory banks. By teaching the children how to rehearse new information externally, the researchers found that children with Down syndrome were able to acquire and retain (in long term memory) the information in question.



Rehearsal is exactly what it sounds like. It is the repetition of the information being presented over and over and over and over (and with children with Down syndrome... over and over and over again) until the child is able to recall it... Over and over again until it is learned and the information is available in short term memory. Then the continued external rehearsal and organization of the information into an understandable framework for the particular child facilitated the long term recall of said information. Simply put, repeating the information over and over again, was shown to help children with Down syndrome learn and commit the information to memory such that they would be able to accurately recall and understand the newly learned information. (My guys are excellent at repeating the lines of movies they've watched over and over again... and, ultimately, accurately explaining the movie's plot.)



Interestingly, the research shows that this same learning deficit -- the absence of internal rehearsal -- exists in other special needs populations. Specifically, children on the autistic spectrum also often fail to implement internal rehearsal and organization. Because of the increasingly high incidence of autism over the past 30 years, extensive research has been done on the learning styles of children with Autism Spectrum Disorder.


To address the absence of internal rehearsal, the Applied Behavioral Analysis (ABA) methodology of Discreet Trial Instruction (DTI) was successfully applied to assist children on the spectrum with acquiring information and transferring it from short term memory into long term memory. Discreet Trial Instruction involves high repetition of external cues coupled with consistent reward for a correct response. This is classic and rigid Behavior Modification where a stimulus --> response --> reward process has been shown to be highly effective in helping a child commit the new information to long term memory. Think Flashcards with external rewards (candy, stickers or hugs, even) for correct answers.



In truth, there's nothing extraordinarily new here except for its application to a particular group. The scientific application of these methods to children with Autism AND to children with Down syndrome via research studies proves -- did you HEAR that -- PROVES that ABA Therapies and DTI are successful methodologies for teaching children with Autism AND Down syndrome a breadth of skills including academic, behavioral, language, daily living and more. In short order, I had uncovered more than 9 research studies spanning 20 years confirming these findings over and over again... All pertaining specifically to children with Down syndrome.


The outstanding question in my mind is, why is the standard protocol for children with Autism to automatically receive up to 40 hours of ABA therapies a week.... But there no such protocol for children with Down syndrome when it's been shown to be effective for both populations?
I'm doing my part to change this! At that CPSE meeting I mentioned above, I fought and won ABA services (including DTI) for my children with Down syndrome. And during the application of these services, my children will be studied as research subjects to add to the body of evidence PROVING this is an effective methodology for teaching children with Down syndrome.


If your child with Down syndrome is having difficulty retaining the concepts being presented to him or her, try implementing ABA and Discreet Trial Instruction methodologies. School districts should be made to provide these services once you've shown, via lack of significant progress, that the existing teaching methodologies are not working for your child, then presenting the research showing that ABA therapies are an effective method for teaching children with Down syndrome. Doing so should gain you the services as it did for me.


Together, we can change the world... or at least effectively educate our children with Down syndrome so that they can live more independently and become productive members of society.

Down Syndrome Awareness -- "Disability" is a Relative Term

It's midnight on a Saturday night and I just got home. No, I wasn't out partying like in the good ol' days. I was out, once again, retrieving my dear old Dad from another of his midnight forays. This time I was alerted that he was on the move and able to locate him and pick him up a mere 15 minutes or so after he'd walked out his door... thanks to Verizon's Family Locator service. He wasn't "going home" to Queens or Brooklyn where he grew up... the way he's done a few times before. Tonight, he was just "out for a stroll". Barely a quarter of a mile from his home of 44 years but he had no idea where he was or how to get back home. So Dad and I took a quick trip to Pathmark because that was my ploy, "I was just running out to get eggs for tomorrow's breakfast when I spotted you walking". I certainly don't want him to know that we're tracking him or he'll purposefully forget to bring his phone. And, being out in public in my PJs at 11:00 PM on a Saturday night when everyone else was dressed for an evening of dancing gives a whole new meaning to the term "walk of shame". As I got "the look" from passersby -- a different look than the "what's wrong with your child look" we mothers of children with special needs get all the time -- I wished I could just point a thumb over my shoulder at him and say "Alzheimer's... night walking" by way of explanation. How horrible is that? I realized that would be like pointing to my children and saying, "Down syndrome" as though that excuses or explains anything about me or them. (I'll have to think on this to make some more sense of it!)

So I brought him home and he said he was going to head out again. I knew I couldn't let that happen so we ended up sitting and watching a DeNiro movie together instead. Finally, my sister (who lives upstairs) showed up and together we calmly tried to explain to him why he can't go out walking at night... He didn't get it. He's not ABLE. His Alzheimer's-riddled brain doesn't understand anymore.

If yawning is any indication, I think he was tired enough to retire for the night by the time I left just past midnight. I haven't received any text messages so I'm assuming he's gone to bed by now.

As I drove the half mile home, I felt good knowing that despite all this late night excitement, my children were sound asleep at home with their Daddy, all safely tucked into their beds. That's when I decided that having two children with Down syndrome is a breeze compared to having a Dad with Alzheimer's. Life does not afford us the opportunity to choose our disabilities or the age of onset for ourselves or our loved ones. But tonight's lesson came through loud and clear.... Truly, "disability" is a relative term!

Friday, January 22, 2010

THANKFUL THURSDAY - Even When I Have To Reach For It

There's a lot going on in my life right now, hence the sporadic posts shared in fits and starts. I'm sure I'm less busy and less stressed than many of you and maybe a tad more busy and more stressed than some. Just the same, it seems I'm being pulled in every different direction. It's times like these that dwelling on the crazy stuff can bring even the best, most stable folks down (and I'm not sure I'm one of those)... so it's important to stay mindful of the good stuff going on. So here goes:

[1] Again, I'm thankful that my Dad is still alive and kickin'. His Alzheimer's-riddled mind might well be "senile" (his word choice, not mine), but he's here and for me and for my kids -- who absolutely LOVE their Grandpa -- that's still a blessing and something to be thankful for. We still enjoy our time together, laughing and joking around as much as ever. I have friends who've lost their Dad's and would give anything to be in my shoes right now. Glad he's still here and still an integral (if not always easy) part of my life.

[2] I'm thankful for technology like Verizon's GPS-based Family Locator plan that will help my sibs and I keep track of Dad as he goes on his merry way. He's still physically healthy enough and loves to go out walking. This technology allows us to breath easy knowing if he does get lost and can't hear his cell phone ringing, we can still find him and bring him safely back home.

[3] I'm thankful for all the people who work so hard to provide much-needed and impactful services to children with special needs (and to old folks with special needs). When they're mindful of their purpose the results are always phenomenal. And, I've found, more often than not, that those folks who choose helping professions actually are predominantly focused on doing good (versus fulfilling their own or their employer's [read budgetary] agenda). I've recently, and thankfully, had the good fortune to be surrounded by such people as we try to piece together services that best meet the boys' needs (Dad being one of the boys here).

[4] I'm grateful to have the chance and the ability to give a little something back in the way of advocating and helping other parents with regards to gaining services, NY state law, and the education of children with special needs (Down syndrome or any other special needs). I am by no means an expert but I do have some viable information to share and do so willingly with anyone who asks and/or might benefit from knowing such stuff. There's so much on our plates as parents of children with special needs, and researching how best to proceed is a time-consuming and arduous task. Any time I can take existing wisdom from someone who's been there before me is a huge help to me. By the same token, any time I can give to someone who's bringing up the rear, walking in my shoes, is a way for me to pay it forward. A way for me to say thanks to all those who have helped me on my journey thus far... by helping others on their journey. (The added bonus here is, the more I pay it forward, the more peaceful the path will be for my children with Down syndrome as they grow up in this crazy world.)

[5] I am thankful for this extraordinary and wondrous life I have. I am so glad that I am here... right where I'm supposed to be, with these beautiful children of mine and this loving husband that I chose and who chose me back. I'd rather be right where I am than not be at all. Sadly, I was reminded yesterday via a telephone chat with an old friend who has a family member that would rather not be... that not everybody feels this way. Lucky me that I do! I love life! I love MY life. Sure, I recognize that there are aspects of my life that could be better... knowing that is what keeps me striving to improve myself and my family's existence. Ahh to be human and know it... Even better, to appreciate it.

All that being said (or typed), I sure could use a relaxing all-expenses-paid vacation on a sunny beach anywhere in the world that might help me forget about all the craziness that's going on right now in this life I'm having so much fun living. Key word there is VACATION: A temporary respite from the usual routine. I'd come back with a little more sleep and a little less stress and jump right back into the fray.

No, I would not trade my life for any one elses. I would not change a a thing about the colorful and loving players that are in my life. It all happens for a reason and it's our job to discern that reason as we go forward. The good, the bad, and the ugly; I'll take it all "as is" as they say with a little extra love and laughter...

Right about Now you might be thinking, "how can she be so darn happy and content with her life? Isn't there anything she wishes were different?"

Just so you know I'm a fallible and imperfect human being just like every one else, there is one little thing I might change... I wish I could miraculously add a couple, few zero's to the balance in my savings account without having to work for it (LOL... can I hear an "Amen to that, sister"?). I honestly don't want for much... but happiness guru, Gretchen Rubin, author of The Happiness Project found that "money can buy some happiness [or peace of mind] if it's used right." I'd be willing to test that premise with a little more well-spent (or well-saved) money to "buy" me a little more happiness and peace of mind.


After all, who amongst us couldn't use just a little more happiness?

Aaaah to dream...