Sunday, February 28, 2010

Not Just Another Sarah Palin, Family Guy, R-Word Advocacy Rant!

I'm so tired of all the insults flying back-and-forth over the recent Sarah Palin-Family Guy episode -- Rahm Emanuel and Rush Limbaugh issues notwithstanding. Truth is, I think Family Guy is an incredibly rude and NOT funny show. They use ridicule and demeaning comments in place of humor... a put-down-the-other-guy mentality that I hate no matter who uses it.

No one is better than anyone else and every one is better at something than somebody else. We all have different strengths and weaknesses and we all have something of value to add. This is what makes the world go round. It's called acceptance!

For the record, I wasn't personally offended by the Family Guy episode. And Sarah Palin's reaction didn't offend me either. I guess if someone in tv-land poked fun at me directly -- using the fact that I have a child or 2 (or identical twins) with Down syndrome to get my attention -- and then the media specifically asked me what I thought (this is exactly what happened), I would have reacted too! I might have had the wherewithal to say that in the realm of insult-slinging on that show, I thought the writers uncharacteristically used just a little more restraint with regards to depicting people with Down syndrome than usual. I might have said that "Ellen -- the "Down Syndrome Girl" (some people first language would have been nice) -- was a strong and confident woman who stood up for herself. And I might have said I appreciated her date's parting line... "you're just like everybody else!" Isn't she just?! Two eyes, two ears, a mouth, a nose, a body, a brain, a job, a family, personal motivation and political views, etc....Yup, just like everybody else!

Or I might have also reacted like Sarah did. Yes, I believe the "My mom used to be the Governor of Alaska" line was a direct hit on Sarah Palin and it's no coincidence that "Ellen" had down syndrome and Trig has Down syndrome. After several years of being held up to attack for every thing she does pertaining to her son with Down syndrome, I guess she's entitled to speak up on her own and her infant son's behalf. What I heard in her words was, "Why? Why drag my son with Down syndrome into this? Go ahead and pick on me but leave Trig out of it. There will be enough challenges in his life without your contributions." This poor mother has been targeted at every turn by proponents and detractors alike. One group says she doesn't say it right or consistently enough. And another group says she's using her son to get votes (though she's not running for any public office at this time). I'd just hate to be in her very publicly criticized shoes! She can't win no matter what she does.

As I always try to look at the bright side of every situation, I think her actions do show the world that she's proud of and has accepted Trig just the way he is. She's also proven that life doesn't have to change so drastically after having a child with Down syndrome... a fear expressed by many new parents of a child with Down syndrome. I also think Trig will grow up knowing he is loved and was treated just like all of his siblings. And I think he'll have incredible opportunities because of who his mother is.

As the mother of 2 children with Down syndrome, I want to teach the world and my children these things and more. But, admittedly, like SP, I pick and choose the issues and the instances pertaining to Down syndrome awareness that I want to address and I let some slide. Heaven help me, I don't address them all! None of us do... or can! I think Rahm Emanuel was out of line with his use of the "R" word but I didn't call him out on it. And, I personally felt Rush Limbaugh's use of the "R" word was even more offensive than Rahm's. But I didn't write him either. I refuse to listen to Rush and should Rahm ever run for public office I certainly wouldn't vote for him. That, I guess, is the extent of my stand against these 2 thoughtless public figures. It's easy for me to say or do because on a day-to-day basis, Rahm's and Rush's opinion, wrath or reach carry no particular weight in my life.

As much as the "R" word or diagnosis-first language hurts my heart, sadly I have encountered a number of people -- with direct influence over me and my children -- who used the "R" word and worse and/or who failed to use people-first language but who I hesitated or failed to correct when they mispoke for fear of retaliation. I know firsthand that no matter how kindly you address it, sometimes the receiver's reaction is negative. As such -- and I hope you can all forgive me for being an imperfect human being who is occasionally too afraid of the potentially negative outcome to consistently confront the mispeaker -- I have not addressed the issue because the speaker has influence over decisions that are too important to me and my children to risk their defensive or passive-aggressive reactions. I pick my allies as carefully as I pick my fights. I plan my victories for their impact. And I overlook battles where the casualties are too great for me and my children to bear.

Honestly, the number of inappropriate and prejudiced comments towards people with intellectual disability and/or Down sydnrome is EXHAUSTING and it is, quite frankly, impossible for any one of us to address every single gaff. Besides, if I did, people would avoid me for being one of those mothers with a chip on her shoulder; someone who is just waiting to be insulted. Then they would miss out on the opportunity to witness first hand what happily living with Down syndrome really means... through direct exposure to my beautiful children and to me.

Yes, I have let it slide for a million good and bad reasons -- from too tired to fight, to not wanting to bring more attention to the particular speaker, to not offending someone who holds some significant power over me or my loved ones. Right or wrong, I correct when I choose to and not every single time. My bad. But each of us has our opinions, thresholds and reasons for when and why we choose to address and when or why we let it slide. I'm not excusing myself or SP so much as accepting that we are only human, we have our reasons and we are doing what we can and think is best to foster the cause -- whether we all agree or not.

I certainly wouldn't want the whole world critiquing me on how I raise my children with Down syndrome or my child without Down syndrome. I, for one, am absolutely living an imperfect life in my glass house over here! Yes, I have carried all 3 of my children like "loaves of bread" under my arms and worse! My then 3 1/2-year-old daughter held BOTH of my boys at the same time straight out of the hospital and may have done a better job at supporting their heads than I did the first time I held my babies with Down syndrome. And, I happen to think my boys look adorable in just a diaper and shirt. Maybe I wouldn't let my child be seen sans pants if I was a public figure or Sarah Palin... but I am neither. Or perhaps I'd do just what she's doing to show everybody that there is no difference between my child with Down syndrome and your child without. No difference between me and anybody else raising kids with or without Down syndrome. I can't say for sure!

But I do know plenty of mothers who have children with Down syndrome who do things differently than I do and that's just fine with me. Nutravene, no Nutravene. Fish Oils, no Fish Oils. Physical, Occupational and Speech Therapies, No Therapies. Mainstream, Integrated, Self-Contained Class, or Homeschooling. Vocal advocate or private parent. All personal choices. I would never criticize any of them for parenting their way. There are a million ways to successfully raise a child... with or without Down syndrome.

And finally, I've got to say that if Ms. Palin DIDN'T carry Trig around or include him in the parade-my-family-across-the-stage photo opportunities, I -- and, I think, many other parents of children with Down syndrome -- would be even more upset at the exclusion. Then the political machine and probably us mothers of children with Down syndrome would crucify her for THAT instead of THIS.

Agree or disagree with her political views or even her advocacy efforts if you want. Whether you or I like the method, words or consistency any one else uses to advocate on behalf of their loved one with Down syndrome is moot. Each of us speaks up when we choose and with our own voice and within the realm of our own experience. SP's not breaking any laws and she's not dangling Trig out of an open window. Kudos to her for speaking on his behalf and for proudly showing off her beautiful baby who happens to have been blessed with an extra 21st chromosome... her way! I do it my way EVERY SINGLE DAY of my life with my beautiful kids!

You know, I was recently reprimanded (I'll save the details for another post) for something I did that was apparently not quite the way someone else thought I should have done it! For the record, I reeeeallllly didn't like the criticism one bit! But after an internal rant of "who do they think they are?" and a few days of soul-searching, I know that my parenting style has facilitated my children's development and has broken down many stereotypes about Down syndrome for a lot of people... and I will continue to parent my children the way I choose.

You show off your kids your way and I'll show off mine! You advocate with your voice and I'll advocate with mine. Your message may hit home for some, while mine will hit home for others. Together we can change the world!

Because I see discrimination towards and prejudgements placed on my children every day, I have become a vocal advocate, actively seeking out opportunities to educate others with regards to Down syndrome. My goal is to voice my educated-about-Down-syndrome opinion without slinging insults over my neighbor's fence, and without using sarcasm, put-downs or any other hate-mongering tactics. I mean no criticism to anyone. I hope to sway no political opinions for or against Sarah Palin or any other politician. I just want to change the way the world sees and treats my children and all people with Down syndrome...

Not with harsh, inappropriate or judgemental words about another mother who walks in my shoes but with an open heart and with whatever intelligence I have at my disposal... And most of all with patience and perseverance directed at those who purposely or inadvertently insult anyone with Down syndrome.

Friday, February 26, 2010

A Boy and His Remote -- An "Uh Oh" Moment!

As I was sitting here in the great room, preparing a new blog post for today, the Old Soul yells to me from the living room...

"Mom, Michael did something funky with the remote and I don't know quite how to help him. The TV says, "You are not subscribed to... Playboy en Espanol!"

An "Uh oh" moment I thought wouldn't happen for at least another 10 years or so!

Thankfully, my daughter was on-site to report and I caught him before he hit the OK button. Otherwise, the Sarge would have had some explaining to do (LOL).

Sunday, February 21, 2010

Extraordinary Wisdom Out of the Mouths Of MY Babes [With Down Syndrome]

My dear old Uncle -- Dad's older brother -- died this week. He was 79 and infirm. It was sad though not entirely unexpected after his long illness... Still, one never quite expects such things even when we know it's coming. Despite living in a neighboring state, I knew him well as he is the father and patriarch of a beautiful, fun-loving and very large family... my 10 cousins -- with whom I've maintained a close relationship throughout my life. The third Saturday of July every year, my family and I pilgrimage to Deep River, CT to attend the colonial Muster and to break bread afterward and swim in Cedar Lake (a favorite swim hole of ours... and Uncle Pete's) with my aunt, uncle and cousins. Then we gather again each August to camp with his extended family including children, spouses and grand children... a group of 40+ (not years, but numbers) for anywhere from a few days to a week to play, eat, swim, pray, ride bicycles and otherwise bask in the sunshine of each other's good company. As a result of these twice annual vacations, my boys -- (here it comes again, in case you're new here) almost 5-year-old identical twins with Down syndrome -- and my 8-year-old daughter know well and loved Uncle Pete too!

As a matter of fact, my last living image of Uncle Pete, is one of him scurrying down the campground road in his wheelchair -- using his feet instead of his hands to speed his pace. He was on his way to come visit my beautiful children at our campsite and to see first hand the "new" used pop-up we'd purchased specifically for this annual trip.

So we made the 2 hour trek up to Connecticut to attend Uncle Pete's wake and funeral to honor him and support his family. And, since we had no other options -- which is fine because I believe that death is part of life and a great teaching moment to instill greater faith in God and the concept of heaven -- we brought our 3 children with us to the wake (not their first). The anteroom was crowded with people and the walls were bejeweled with enlarged photographs of Pete as he had been in life. As we made our way into the main room to give our condolences to his wife and children -- my aunt and cousins -- the boys stopped 20 feet short of the casket and stared at Uncle Pete... quietly saying, "No!".

Me: It's OK. You see Uncle Pete? Uncle Pete died and went up to heaven.

The Boys (simultaneously): No... Peeping! (sleeping)

Me: Yes, Uncle Pete's body went to sleep but he got sick and he can't get up anymore. So his soul went up to heaven to play with God.

Brian: No... Pete up!

With that, Michael walked around the room looking at some of the photos and said, pointing to each, "Pete... Pete... Pete...." and then he came back towards the coffin, and said quietly, pointing again "Pete". Several of my cousins were listening to the exchange when my Aunt Josephine came over to see us and collect her usual hello hugs from the boys and my daughter. With a voice of authority only an almost-5-year-old boy can pull off, Brian said to her (as though she didn't hadn't heard what happened):

"Pete Broke!"

"Yes" Aunt Josephine said, "that's exactly what happened!"

The boys were well-behaved and appropriately solemn throughout our visit to the funeral home -- except for the moment when they picked their Grandpa out of a huge crowd in a family photograph. And towards the end, Brian sat quietly on my cousin Mary's lap, through a decade of the rosary, hugging and comforting her. As we prepared to depart, he came back to me and said, "Oh Mommy, [Mary] crying. [her] Dada peeping." signing the word crying as he spoke it, with such sympathy.

My children understood perfectly -- without delay or impairment -- why we were there and what had happened to Uncle Pete.

Farewell Uncle Pete and please put a good word in for my Dad while you're up there!

Friday, February 19, 2010

Will Their Lives Turn Out OK?

Remember those Magic 8 balls? You'd ask a question, shake it up and wait for a cryptic answer to appear in its watery window... "No Way" or "Try Again" or "Maybe so". When it comes to my children with Down syndrome, I long for the answer to the niggling question... Will their lives turn out OK?

I'm sure I'm not alone.

When it comes to the well-being of my beautiful boys -- almost-5-year-old identical twins who were blessed with an extra 21st chromosome (for those who haven't heard me yell this amazing blessing from atop the highest mountain) -- it's my nature to gather as much information as I can to make the most informed decisions I can. I read blogs, research papers, news articles, magazines, books and more. I talk with every parent of a child with Down syndrome (or any other special need) and every "expert" that I encounter to gather their experience and knowledge and then twist it, turn it and apply it to our situation as possible. I reach out and connect with those seeking the elusive answer to the question, "Will their lives turn out OK?" to see what their answer looks like. And I look to those who have gone before me for insight and experience. Then I make my choices, settle my mind and blog about it so that others who come after might benefit from my experience.... to help them find their own answers.

But, this all encompassing question, "Will their lives turn out OK? has so many facets to it:

Will they be able to keep up in school? Graduate from High School? Go to college? Will they find true friends? Work in a rewarding job? Drive a car? Live independently?... And the list goes on. I even find myself occasionally wondering and hoping that 2 beautiful and deserving girls fall deeply and madly in love with my 2 beautiful and deserving boys someday. These are components of what I think lead to a "good" life. But I have to remind myself that these are my measures... not theirs. And these may or may not be components of their lives based on their choices. And, though I still secretly want all these things for them, when I'm thinking logically instead of emotionally, I believe their lives will turn out OK with or without these things.

Let's look at each of these individually and logically:

Will they be able to Keep up in School: I know many people -- with and without special needs -- who did miserably in school and/or took longer to get through it than the prescribed 13 years... and went on to lead very fulfilling lives (by their own AND society's measures). They chose a career path where they had particular knowledge, passion and talent and made it work for them. I've also seen many a child with special needs perform well academically and graduate with honors.

Will they Graduate from HS: I know countless folks -- with and without special needs -- who did not graduate from high school (and some who returned much later to receive GED diplomas which are, for all intents and purposes, the same thing as graduating from HS). These people hold fulfilling jobs and are able to support themselves and their families. As I said above, for any of us, following your passion and talents often leads to successful career outcomes... regardless of your education or your special needs.

Will they Go to College: Despite what many people think, college is still optional. There are lots of jobs and careers out there that do not require a college degree and still provide an individual with a rich and fulfilling life. I know tons of successful people -- with and without special needs -- who did well without a single college credit. And a bunch with advanced degrees who can't hold a job and/or who are miserable in life. For the record, I hear more and more each day of people with special needs who have acquired advanced degrees and are putting them to good use! With or without college, it'll be OK!

Will they find True Friends: For me, the definition of a true friend is a person in my life who accepts me for who I am, who loves me and who offers help in times of need. Sometimes it's family. Sometimes not. My boys already have true friends... people who love and accept them just as they are and who have already proven themselves to be supportive. Like the law of physics that says an object in motion will stay in motion, I believe their ability to have and be a true friend will always be there. It is human nature to care for others. We are, after all, pack animals and tend to gravitate to like-minded souls.

Will they have a Rewarding Career: Rewarding is a relative term, isn't it? So many, myself included, have settled for careers that are "good enough" because they are marginally enjoyable while allowing us to pay the bills and still give us the freedom to pursue happiness in other areas of our lives. Perhaps my 20-year career in marketing technology is not my calling or my passion, but it's certainly been more than OK and rewarding in its own rite. I know enough people -- with and without special needs -- that are in rewarding, good enough careers. I know as many -- with and without special needs -- that have chosen to pursue their ideal and most rewarding careers. It works both ways! So, my children will choose for themselves according to their ability, their opportunity, their passion and their drive.... just like the rest of us.

Will they learn to Drive a Car: Depending on where you live, driving can be highly over-rated and even sometimes considered extravagant. In NYC, people who own and drive a car are sometimes looked on as wasteful due to the unnecessary cost of maintenance and storage -- never mind the environmental considerations in such an over-populated area. The cities and suburbs are well-stocked with ample forms of public transportation and walking is becoming one of the most popular modes of transportation. One does not have to drive to get where they're going! That said, I've known and hear constantly of individuals -- with special needs -- who acquire their drivers' license, purchase a car and get around town on 4-wheels like the rest of us.

Will they be able to Live Independently: When I really consider it, living independently is an interesting term that hardly exists in reality. I don't live independently! I require the assistance of my husband who works while I stay home and take care of the kids. We share the cost and care of our lives. I did at one time live alone and "independently" pay my rent but I relied on my landlord to give me that shelter for a reasonable fee. And I, like most folks I know, specifically sought out others to share my life and responsibilities with. We live with friends or take roommates. We live in apartment buildings and co-ops to share the cost and maintenance of the land itself. We cohabitate or marry to share the responsiblities of home and children. From the regular Joe to the wealthiest guy... any one of us may hire babysitters, housekeepers, accountants, personal assistants and chefs to do for us what we need help with. Is it so different for my boys -- who might need assistance in certain areas to best conduct their lives? Is it any less acceptable for them to choose to live in close proximity with or garner the services of others who can assist them as needed? More and more people are choosing assisted living arrangements as they age too (anticipating the need for help). Interestingly.... during my career-ladder-climbing days, I lived by the notion that Donald Trump did not get rich because he knew everything. He got rich because he surrounded himself with people who knew and helped him to do the things he couldn't accomplish alone. Though he applied this principle to his career... it's no different for one's personal life! To the extent that they can and desire to do so, my boys will live to the level of independence they choose... just like I do.

Finally, Will They Have Rewarding Relationships: Gosh, I hope so. I can't imagine someone wouldn't fall madly in love with my boys... I certainly have! Though I hate to be practical on this one... in truth, most people -- with or without special needs -- have several sometimes rewarding and sometimes unrewarding relationships over the course of their lives. So I'll teach them what I can about finding someone special, falling in love and doing what it takes to maintain a rewarding relationship and hope for the best.

This, I think, is the hardest lesson for a mother to learn and accept: Regardless of what they achieve or don't achieve in my book, it's their life to live. Theirs to enjoy. To try, to fail and to succeed by their own standards. Not mine.

So, in the end, the Magic 8 ball does actually have the answer to that niggling question that lives in the shadowy parts of my mind and shows itself during my most doubtful moments... Will Their Lives Turn Out OK? And every now and then when it comes up, I shake up the proverbial magic ball in my head and get the same answer every time...

Yes, Absolutely!

Saturday, February 13, 2010

Under The Influence of a Diagnosis

What if, when your child's Individualized Education Plan (IEP) packet was distributed to potential service providers, there was no diagnosis provided right up there on the first page and in the top 2 inches of information along with your child's name, date of birth and address? What if every potential educator had to actually read through your child's entire IEP and evaluations to determine what his/her functional abilities/disabilities were before deciding whether and how they could meet your child's needs?

That actually happened to us!

When the boys made their transition from Early Intervention to the Committee for Preschool Education (CPSE) at 3 years of age (plus however many months bridge you to the following September), our CPSE accidentally left the line for Diagnosis blank in the service request packets they sent out.

Think about that!

I'm certain I'm not alone in believing and having personally experienced discrimination by diagnosis. Interestingly, it didn't happen this time -- at least not initially -- and in my opinion. When the boys' applications to providers were distributed, all but 1 school (apx. 11) contacted us about program and space availability. They all "accepted" the boys based on their written evaluations which outlined their abilities and disabilities. We eliminated half of these providers because they did not have availability for both boys in the same class (something we'd decided was right for them). And the remaining providers acknowledged and accepted my desire for an integrated setting, encouraged us to visit their facility and requested a face-to-face meeting. Some were outwardly surprised when I finally mentioned that my boys had Down syndrome (not having ferreted out that information hidden deep within the text in a very few innocuous places in their evaluations). Only one of the visits we made resulted in outright discrimination by diagnosis, with the boys being declined based on the decision-maker's concern about their normal-3-year-old attention spans as measured in the evaluations and observations performed by that school, with the telling comment "I tried very hard to disregard their diagnosis when making my decision."

[Between you and me, I'm convinced she failed to actually do so and made her decision based on her generalization of their diagnosis to them and not on their individual abilities!]

I'm not certain the results would not have been similar had the diagnosis been provided right up front on that first page. But, from what I've heard from others who've gone through this process and whose diagnosis was not accidentally omitted, an 11 out of 12 response and acceptance rate is phenomenal... especially when considering we were looking to place 2 children in integrated classrooms pretty late in the school year. Perhaps, my boys' abilities spoke for themselves instead of their diagnosis speaking for them. Perhaps the absence of an obvious diagnosis gave reviewers the opportunity to get to know my beautiful and capable boys first... and to learn they had Down syndrome second.

We'll never really know... but I know what I think and what I feel actually happened.

I wonder if there's a way that people in the position of judging, placing or educating my boys could actually SEE, MEET and/or TALK WITH them before making decisions based on what they see written on a piece of paper. No amount of words could accurately describe them and certainly no diagnosis could do them justice. As such, whenever possible, I bring my boys along to meet the folks in the position of making these critical decisions. I've even popped in unannounced with the boys in tow to see the Committee Chairperson in our school district a few days or weeks prior to our meeting-- under the pretense of asking a simple question -- just so she has the individual in her mind, not just a name or diagnosis on a piece of paper when the actually decision-making process is undertaken. When that's not possible, and actually every time the committee meets, I bring a picture and tell a cute anecdotal story that introduces the group to the essence of who these wondrous boys of mine really are. I want no more, and will accept no less, than the services they need to succeed and are entitled to receive based on their abilities and disabilities... NOT based on someone's preconceived and usually erroneous notion of what their diagnosis means!

Have you encountered discrimination by diagnosis?

Thursday, February 11, 2010

What Dealing With Down Syndrome Taught Me About Dealing With Alzheimer's

Isn't it odd how we can overlook something we know and practice in one area of our lives but neglect to apply that same ingrained principle to other, similar situations that are haunting us? No, you don't need to stop reading just because Alzheimer's Dementia or Down syndrome hasn't directly touched your life [yet]. This post is about how I FINALLY came to apply an invaluable lesson I've applied daily in raising my beautiful children -- 2 of whom, as you may have heard by now, are blessed with an extra 21st chromosome, AKA: Down syndrome -- to my father's condition. And how that lesson translates well to so many areas of my life. This is about advocating for myself and for my loved ones whatever the ailment. It's about self-advocacy, self-education and self-research to ensure that I know what I need to know to get all we need to live long and fulfilling lives.

My father's descent into his currently diagnosed as "moderate" Alzheimer's Dementia has been extraordinarily rapid... apparently sped up by his overuse of alcohol for many years (despite 20 years of abstinence). Thanks to pharmaceutical advertising, we're all too familiar with Aricept as a treatment to slow the progression of the disease. Short of that drug being effective -- it wasn't for Dad and had the really unpleasant side effect of incontinence -- we were not advised to implement any other drugs at all. Over the last 6 months Dad has visited uncountable medical professionals all related to his rapid loss of memory. NONE, not a single doctor specializing in these types of disorders, ever recommended drug therapy to address the problems we were facing together with Dad. Not until his long "walks" and delusions (strongly held, incorrect beliefs including the notion that he was currently working as a police officer) became a barrier to his placement in an Assisted Living Program (ALP), did the notion occur to any of us that drug therapy could help. It wasn't until after my siblings and I asked the medical community treating Dad -- 2 elder-care psychiatrists, an elder-care social worker, a geriatrician and his GP -- to prescribe a drug to sedate him that it clicked. Finally, his GP -- who barely knew Dad because he rarely goes to the doctor and is, oddly, a grand specimen of physical condition at 78 -- listened to our plight and prescribed Haldol. Several lay-folks at the ALP and others skirting the health-care community mentioned unpleasant side effects when prescribing Haldol to the elderly... these very rapidly became evident in Dad. Our backs against the wall, with one final push, the GP prescribed Seroquel. And so the research began.

I don't know why I expected the professionals involved in caring for the elderly would be more forthcoming, open-minded or attend specifically to my Dad's needs regarding prescribing or not prescribing meds to address his condition. But they didn't... at all. Perhaps for fear of legal action as had been suggested. Whatever. To me, the reason is innocuous... They're simply not doing their jobs! And that's what started the wheels going.

What was I thinking? I would never leave the medical, educational, or day-to-day care of my children with Down syndrome solely to the professionals. Sure, I look to them for their advice... But, I know more about my children's needs, behaviors, strengths and weaknesses than anyone else in the world. Why did I think any differently about treatment for my Dad. Turning to the internet for information; asking others who had walked in my shoes, whose parents had suffered the ill-effects of Alzheimer's Dementia; gathering experiential as well as professional information from multiple sources we formulated a plan of action that worked best for Dad specific to his symptoms, health, degree of illness and level of incapacitation (that a word?).

I have done just this every single day of The Boys' lives... with every decision and at every turning point. And, the onset of their genetic condition was even more sudden than the progression of Dad's disease. The learning curve a vertical line straight into the unknown versus the rapid, 6-month decline we've seen with Dad. With the boys, as their mother, I saw it as my job, my responsibility and to their advantage that I research, learn and apply what would and wouldn't work well for us given our particular children, situation, beliefs, conditions etc. Isn't that what blogging is all about? Sharing one's experience such that it might benefit someone else going through the same. Why did I never think to look for blogs written by adult children of parents suffering from Alzheimer's Dementia to learn how they navigated the crazy waters this disease throws you into?

Sadly, it's not even the first time this lesson has been presented to me. A dear friend of mine lost her mother to breast cancer, some years ago, despite surviving for 13 years with the disease. She wrote a book documenting her research, treatments, and health care choices. The moral of her story was that you, the patient -- or in my case, the mother or daughter of the patient -- are in charge of your treatment. Doctors, educators, professionals will follow protocol -- their preferred course of treatment -- which in Dad's case was none at all, each touting their method as the best without necessarily taking the individual details into account. With illnesses -- as with genetic conditions like Down syndrome -- current protocol is often a status quo attitude and may not necessarily be the "best" course of treatment. This is not how things change for the better for the individual or for future generations. This is not how our predecessors got their loved ones out of institutions and into the mainstream or into an Assisted Living Program.

The lesson: Every aspect of the treatment of your loved ones is in your hands. Their medications, education, therapies, living situation -- everything -- is negotiable and should be considered specific to your loved ones' needs. That's not to say that you couldn't just apply the current protocol if that is your choice or the best solution for you. It's just that you don't have to be a helpless victim to a system that may or may not openly offer the best solutions available. The internet is the greatest source of professional and personal information to help you determine what may or may not work for you.

Where do I apply this lesson:

o School placement and/or living arrangements and the advice I receive from the "committee": My boys don't have to be in a contained class or segregated school just because they have Down syndrome. My Dad does not have to be sedated and restrained in a lock-down unit of a nursing home just because he has Alzheimer's Dementia. Customized solutions abound.

o Therapies pertaining to my loved one's physical, emotional, social development: The boys can receive assistance to grow in each of these areas or not. My choice. And, I can (and did) look outside of the usual DS protocol to address some of their specific needs. Same goes for my Dad. Or, as he is at the end of his life, we/he can choose not to address any particular area of his life. The decision is specific to the individuals condition, needs and desires.

o Meds/supplements touted to help my loved one's specific conditions: We get to decide if fish oil or Nutravene supplements help and are worthwhile for my boys. We get to choose the medication we want to use to address Dad's specific symptoms or, as the case may be, not to medicate to slow down the development of the disease.

Feeling helpless, hopeless, out of control or without recourse stresses me out and makes me very unhappy. I know that's a "duh" statement. But this situation with my father played on all of these emotions like my sons' diagnosis of Down syndrome never did. All because I did not step up. I didn't realize I could intervene on his behalf the way I do and have with my children. But, I know now. If you want it, instead of being a victim of the system, you can take responsibility for how and when and whether to treat. You can alter the outcome... and the future for your loved one and for yourself!

Wednesday, February 10, 2010

Grab Your Peace As It Comes

Peace and serenity are not always within my reach given some of the crazy stuff going on in my life lately... Having 2 out of 3 children and an elderly father all with special needs requiring particular attention just now can cause that sometimes! But, today we had a snow day.

There was no going out to play or to do anything else in the untamed weather. So it was a calm and quiet day indoors. I could have loaded up my day and the kids' day with planned activities and structure but I didn't. I took my lead from the weather and had an untamed day.

We played a little, worked a little, watched some movies and then played some more. We ate when we got hungry (not on a schedule) and did whatever we wanted all day long.

Sometimes we did stuff together, sometimes individually.

I grabbed my peace as it came and had a wonderful and relaxing day. It was a gift I accepted from nature!

More Special Exposure Wednesdays at 5 Minutes for Special Needs!

Thursday, February 4, 2010

THANKFUL THURSDAY - A Quick & Witless Post (But Meaningful)

It's been a long and psychologically rough day. Grandpa's first day at the Assisted Living Center... and he's not happy about it. But:

[1] I'm thankful that such places exist and are staffed with amazingly caring people who "get it" when an old guy thinks he's got somewhere else to be but can't be anywhere else. They were wonderful despite 1 escape and Dad's adamant stance that he had to go home. He did NOT get to go home....

[2] Thanks to my brother who immediately jumped in to calm Dad and induce sleep finally. Can't imagine what's going to happen tomorrow. But, for tonight, my siblings and I are officially off-duty for the first time in a very long time!

[3] I'm grateful for my amazing and supportive siblings who have all worked so hard to make this possible for my Dad. It's been a very long haul but, hopefully, we've executed a workable solution. (Cross your fingers, knock on wood, or say a prayer... whatever is your way... Please throw some good karma up into the universe that Dad acclimates quickly and easily or plain old acclimates in whatever way he needs to... but soon and peacefully for him and for us all!

[4] Special thanks go out to Mel, Dad's new roommate. What an absolutely wonderful old gentleman who jumped in with good humor and perseverance to help Dad feel welcome. He's a Godsend. I can't imagine why his 10 children choose not to visit this dear old man but you can be sure my sibs and children and I will be visiting not only Grandpa, but Mel as well!

[5] An off subject thanks go to our wonderful new at-home PROMPT speech therapist using an amazing methodology that works wonders for my children with Down syndrome... AND who is making HUGE progress with the Boys already. She's also indoctrinating the new ABA therapist in how to get the best work out of my precious little boys since she's known and loved them since birth. Truly another Godsend!

I'm sorry for such a quick and witless post but I am bone tired. I sure won't need any sleep inducement at all. I'm dead on my feet as it is. I hope Dad and Mel and you all have a wonderful night with beautiful dreams...