Special People Parenting Special Kids

boyinthemoon 199x300 The Boy in the Moon by Ian Brown: The Special Parent Book ReviewThe Boy in the Moon by Ian Brown

I started The Boy in the Moon at what I believed was a disadvantage. I read the NY Times review before I did. I’m glad I didn’t let it disuade me. It’s certainly not that the review was “bad”. Quite the contrary, the overall was very positive. It’s just that the review didn’t move me to action, parts of the review made me believe that the author had totally detached himself from the story and other parts made me feel it was not going to be accessible…that it was a high brow literary work. I wasn’t sure I wanted to read a psudo third-person account of someone’s journey. I decided, no one should take just one opinion about a book and make a unilateral decision, so off I went, not honestly sure what to expect.

I am so very glad I did.

Chronicling the day to day with The Boy in the Moon

Walker Brown, is the son of Ian and Johanna Brown. Walker has a rare “orphan” genetic disorder, CFC (cardiofaciocutaneous syndrome). For those of you who may not be aware, orphan diseases are classified as such because they are so incredibly rare, research and treatment are almost never done. Ian Brown wastes no time in throwing us into life as he and his family have known it for Walker,  for over 8 years at the time author, Ian Brown starts The Boy in the Moon and as he describes it:

For the first eight years of Walker’s life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial.The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.

Ian Brown chronicles this journey and it’s impact on him, his wife Johanna, their marriage, his daughter Hayley and the family as a whole. If you’ve had a child who came anywhere close to these issues, you’ll quite easily relate to the way Ian Brown describes his frustration with forgetting to clamp off the feeding tube before disconnecting it from Walker in the middle of the night. Or the unfixable stains on the rugs the formula caused. Or the self-injury Walker was always inflicting upon himself, which I could relate to as well from my many years of trying to keep Katherine from hurting herself. And just as many times, I couldn’t fathom what it must be like. A non-verbal child who could in no way make his basic needs or thoughts or desires known?  A child who was unable to ambulate, that had to be transported by being carried up and down the stairs of their 3 story home? I have only known this challenge intermittently but I felt like I was in the middle of it, living it, while reading Ian Brown’s narration of events. Details the Brown’s daily life up to and including the decision to place Walker in the care of others are related to the reader in a very stark and tangible way.

Searching for others like The Boy in the Moon

The second part of The Boy in the Moon The Boy in the Moon by Ian Brown: The Special Parent Book Review chronicles the search Ian Brown takes to look further into CFC and some of the other children who have this condition. He meets families and sees first hand what he’s known all along. No two children are alike, their experiences while they have common threads are anything but identical. The manner in which Ian Brown conveys the various thoughts, feelings, and internal debates it sets off are provoking; thoughts which transcend just being the parent of a child with special needs but rather what meaning can be derived from life such as Walker’s. The pilgrimage is almost a spiritual quest and yet you can sense that the spiritual is a realm Ian Brown does not have a comfort level with and that’s ok. I think that having a child with incredible special needs would make anyone who’s even gone through a small portion of what Ian Brown has would question any belief in a higher power, especially one that would allow a child to go through what Walker has and does. In reading about Ian Brown’s inner struggle I could feel my own discomfort and my own questions about all that Katherine goes through and struggles with. It was a process that was all at once uncomfortable and strangely cathartic.

Finding Meaning and Home For The Boy in the Moon

The third part of Ian Brown’s The Boy in the Moon chronicles his travels to find a place he could feel at peace calling home for Walker after he and Johanna were gone.  He, like many parents, doesn’t want Walker to be the inheritance he leaves his daughter. He knows the toll it would take on her through his exploration of the toll it’s taken on him and his wife. I found the examination of various living facilities enlightening. I learned about homes that had only existed in my mind.  L’Arche (after Noah’s ark), an international organization of communities for the intellectually disabled not only shows Ian Brown what is possible for Walker – having a long term home where he can be loved and accepted for who he is –  but is the basis for his own quest to get a handle on what meaning Walker’s life has, extrapolated into what meaning does the life of the profoundly disabled hold.

Why you too should take the time to read The Boy in the Moon

The Boy in the Moon wasn’t the necessarily the easiest read and certainly it wasn’t all happiness, positivity and light. There are parts of this book that didn’t read easily for me, at times it seemed to struggle with transitions from one section to the next. There were other parts that were hard for me, personally, to read – it made me look at things I should spend more time looking at but are hard places to go. Through it all I found that the author, Ian Brown, his candor, bold and sometimes coarse language (which to me was not at all offensive but there were a few curse words tossed in there from time to time) made me feel like I had met him, his wife Johanna, his daughter Hayley and most importantly his son Walker and was taking this journey with them. Some of it completely new to me, some of it so familiar to me I hurt for the whole family.

It’s remarkable how candid Ian Brown is about each and every one of his struggles, and also some of the struggles his wife Johanna has. Some may be offended at my categorization of what the Brown’s go through as struggles. I would suggest that no matter how much you love your child, when you live with a child who has even half of what goes on with Walker that there are very real struggles. That when you have a child who you can no longer reasonably care for on a daily basis and you have to make the profoundly difficult decision that living somewhere other than at home is what is in everyone’s best interest – struggle doesn’t begin to accurately describe it.

I don’t think there are any pat answers and The Boy in the Moon doesn’t try to supply any. While Ian Brown asked the hard questions, he didn’t try to answer them for anyone but himself.  Ian Brown acknowledges the difficulty at coming to any one answer, even personally. Despite the sometimes jumpy nature of some of the segues, it was well worth the read. I felt immersed into the Brown’s life, struggle and search and feel as I have gained so much from taking part in that journey with them. I think The Boy in the Moon will have a lasting impact on you too.

Unique Child Study by Columbia University wants YOU

May 31, 2011 Author: Kyron | Filed under: Articles

PFL logo Unique Child Study by Columbia University wants YOU

Researchers at Columbia University’s Paul F. Lazarsfeld Center for the Social Sciences studying how children who are unique in some way are identified and developed. They are currently collecting stories from parents with children who have been identified as gifted, children who have unique artistic, scientific, or physical abilities, children on the autism spectrum, and children who have been identified as having attention disorders. After reviewing it, I thought this might be of interest to some of you.

While all children are unique, the goal of this study is to identify how children with unique developmental abilities or trajectories develop over early childhood.

Peter Bearman, Principal Investigator, Cole Professor of the Social Sciences at the Lazarsfeld Center notes

Parents have different experiences and observations of their child’s development and they have different personal resources with which they access services or programs. Parents also differ in the type and extent of their support networks and social relations. And finally, parents make different decisions when finding the right academic, extra-curricular, or other placements for their children. We would like to give parents the chance to tell their stories. Survey responses will help us understand the experiences of unique children as well as their development over time.

They are collecting stories of parents of unique children through an online, semi-structured survey: http://uniquechildstudy.org. You could help their research tremendously by  participating in their study. Your answers are not viewable to anyone until you complete the entire survey and submit it so if at any point you feel uncomfortable answering a question, you can abandon the survey. I hope you’ll take some time to go over and help this study out with your participation.

 

The Sunday Paper for May 29, 2011

May 29, 2011 Author: Kyron | Filed under: Disability & Special Needs News

IMG 0915 259x300 The Sunday Paper for May 29, 2011…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Doctors: Electrical implants a big step in paralysis treatment

Electrical stimulation from a spinal cord implant, mimicking the signals the brain would normally transmit to move the body, has allowed a paralyzed patient to stand on his own and walk on a treadmill with assistance, researchers said

Be An Angel teaches golf basics to area special needs students

Several Houston area special needs students got the chance to work on their golf swing and drive the ball down the green as a part of a new pilot program known as S.U.C.C.E.S.S.,  (Students Undertaking Challenging Courses Ensuring development of Sportsmanship and Skills)

Young Special Olympics athlete wins hearts with kind gesture

This young Michigan athlete didn’t win an event to receive a medal and ribbon but instead won the hearts of all in attendance May 7 at Calvin College for the Regional Special Olympics Games.

Texas theme designed for guests with special needs but enjoyed by all

The carousel has chariots for wheelchairs. Braille games decorate side panels on the jungle gym. And table-high sandboxes allow just about any kid to build a castle. Morgan’s Wonderland aims to offer everything a special-needs guest might enjoy at a theme park — while appealing to non-disabled visitors too.

Asperger’s Syndrome: High-Functioning Autism to Lose Its Name

The American Psychiatric Association formalized the diagnosis of Asperger’s in 1994, 50 years after it was first described by Austrian pediatrician Hans Asperger. But the association plans to remove the term “Asperger’s” from its new diagnostic manual, set for release in 2013 — a decision that has sparked criticism from advocacy groups.

The Museum of DisABILITY

The museum wants to include a wide range of disabilities. People with disabilities have been marginalized, and part of our vision is to create a society accepting of people with disabilities. By our presenting to the public the role people with disabilities have played, perhaps that will better help society understand and accept them.

 

 


…that I can use in my life as a parent

A couple of days ago (as you already know if you haven’t been locked in a cave) was Oprah’s last show after 25 years on the air. I’m not going to sit here and tell you I watched the show religiously and read every book in the Oprah Book Club or even was religious in keeping up with my journaling because I wasn’t. Some years I didn’t even like her show….it became too sideshow like, but even she will tell you she too is constantly learning icon smile Five things I learned from Oprahs Finale and love letter to her viewers...

oprah Five things I learned from Oprahs Finale and love letter to her viewers...I did LIKE her show on the whole. I liked the fact that even the people I found reprehensible she tried to keep an open mind about and she gave me an opportunity to learn, even from that. I liked the fact that she highlighted stories other people might have otherwise brushed under the carpet….stories of children who had horrible things done to them, she gave voice and validation to those who otherwise might not have had a voice except in that sideshow and she did it with the utmost respect for them as humans. It is the better self we should all strive to be.

I recorded her last show. I only got a chance to actually watch it this morning….in between being a referee for the kids. It was worth the effort. It was without question her finest hour. A summary if you will of the Best of Oprah. Life lessons everyone can benefit from and how I plan on applying it in my life as a human, as a mom and as the mom to two kids who have some special needs. I hope it’s as thought provoking for you as it has been for me.

  • “Each of you have your own platform… With your own reach… However small or large… Wherever you are, that is your stage, that is your platform, your circle of influence and that is where your power lies… You let your life speak for you…and you will receive in direct proportion to how you give…you have the power to change someones life…and use your life to change the world.” - While I might never have been able to give voice to this, I believe it to be so completely true. Giving is pretty much the number one job as a parent. Not financially (although there’s plenty of that) but rather of your heart. More than your spouse, your parents or your best friend could ever be, your child is your heart. And you give your whole heart to them in a way so profound as to be almost without words. You give to them of your time, your energies, your efforts. You give until many times it hurts. You give even when they are hurting you, verbally or physically. But what you give you receive in direct proportion. Too many times I was told how Katherine would never do this, that or the other thing. Walk, talk, read, you name it, the answer was always “no, unlikely, unrealistic”. HA. You will receive in direct proportion…use your life to change the world. I’ve changed the world in a profound way. Not Martin Luther King, Oprah, Bono huge kind of change the world, but every little change is the catalyst to the next change. It’s why I want to continue this blog. I have no illusions that I’m changing the whole world. But if I don’t put it out there, nothing ever changes. Change begins with me and this is my stage. Hopefully it helps one or two of you along the way.
  • Please take responsibility for the energy you bring into this space- Dr. Jill Bolte Taylor is a Harvard-trained and published neuroanatomist who suffered a massive and rare form of stroke (AVM) which impacted the left hemisphere of her brain. She spoke on Oprah years ago and the message was so profound, Oprah felt compelled for good reason to share it one more time. Dr. Taylor spoke of how even though after the stroke she couldn’t remember her own mother or speak she could understand the “energy” that was brought into her room by the various players…family, friends, medical staff. She could sense positive and negative, she could get who respected her and valued her and who didn’t, who was on her side. To me that’s incredibly powerful! Of course it didn’t hurt that I have a daughter who had a massive stroke on the left side of her brain which to this day impacts her, but because it is such a basic thing. People who may understand nothing else in their lives, people who are profoundly disabled, probably non-verbal, maybe unable to communicate in any way you typically conceive ofenergy Five things I learned from Oprahs Finale and love letter to her viewers... communication are going to feel and perceive that energy! How you treat someone matters How you act, speak, the very energy you give off matters. Day in and day out is a rat race. There’s work, errands, kids, and then if you’re like me there is juggling therapists, doctors, medications, exercises, on top of the laundry, the housework, the cooking….well you get it. Honestly, most days by the end of the day the energy I’m putting into this space is far from stellar. Bitchy would be far more accurate, but we’ll stick with far from stellar. I don’t always bring my best energy to either child….or my husband for that matter. Today, I take responsibility for the energy I bring into this space. Change begins with me. You will receive in direct proportion to how you give.
  • Do unto others as you would have them do unto you or as Celie says in the Color Purple Everything you done to me, already done to you.” Karma, energy, divine retribution….plenty of words for it, and clearly it’s a concept that isn’t at all Oprah’s, but it’s a message in this day in age  certainly seems to have been forgotten. I wrote earlier this week about the PSA that Glee Characters did on End the Word. As a parent, special needs or not,  I need to use this rule FOR my children. They need to have the world remember that treating someone poorly because they are different is NOT ok unless you plan on having others treat you that way in response. It’s important for my kids, it’s important for your kids, it’s important for everyone who is discriminated against because of their religion, gender, race, political affiliation, sexual orientation or disability. It’s important because we’ve gotten away from this lesson in almost every way. Change begins with me. You will receive in direct proportion to how you give.
  • You. Are. Worthy. You are worthy because you were born. You are worthy because you are here. Your worthiness is a BIRTHRIGHT. Each person is wonderful for what they bring into this world and everyone wants and deserves to be heard. Validation. I see you, I hear you and what you say and how you feel matters. You matter. Simple and yet so profound. Every human wants this. Those with disabilities are not always granted this basic human right. It’s my job as a parent to instill my children with the knowledge that they ARE worthy. That they ARE wonderful and that anyone that doesn’t treat them that way, is wrong. That they know this basic truth as firmly as they know their own name will hopefully makes it so that they are never abused, taken advantage of. Ok, that’s a lofty goal. But the internal strength that comes from knowing you are worthy, can carry you through a lot and will make a difference that can’t quite be quantified. I do know that people who don’t think they are worthy are willing to take a whole lot of crap because they don’t feel like they are deserving of anything better. I know because I was one of those people. I know through the love of some very wonderful people that I. Am. Worthy. I hope and pray by teaching my kids this they never will go through what I did and that in receiving that love and respect and validation they will pass that validation on. Change begins with me. You will receive in direct proportion to how you give.
  • “Be a Safe Harbor for someone” Oprah spoke of her teacher Mrs. Duncan who first gave her that first safe harbor. How her parents and grandparents did the best they could but Mrs. Duncan’s class was the first place she felt safe, loved, validated. Every parent does their best I am certain, some are just more capable than other. I don’t want to judge. I’ll leave that to the higher power. I will say I hope I am that safe harbor for my children. I hope I’ve been that safe harbor  and can continue to provide some shelter in the storm we call life. I hope that I raise children who are empathetic and sympathetic and can be a safe harbor for others. I hope that I provide a safe harbor here, on my platform for those of you who are feeling like you are swimming alone. You are not. The stormy seas can be calmed here. You can be supported and validated no matter how rough it’s been. I’ve been in those stormy waters too and know what it takes. I hope I am that safe harbor for others who are near and dear to me – my husband, my extended family, my friends. I always want them to know they have a place out of the cold, out of the storm. Somewhere they can be validated, because we are all worthy. You will receive in direct proportion to how you give. Be the change you want.

It was a moving hour. She gave an incredible gift in that last hour. She’s given gifts well beyond the trips, the cars and her favorite things. The “things” will fade away. These lessons will Change the World. And as she spoke of the love she has felt from her audiences – both in the studio and on the air, I believe she will continue to receive in direct proportion to how she has given. God Bless and thank you for 25 years, Oprah. But more importantly thank you for your love letter.

Tornados and Hurricanes and Flooding! OH MY!

May 26, 2011 Author: Kyron | Filed under: Articles, Resources, Strategies

You can’t miss it if you turn on the TV. It seems natural disasters are everywhere these days. From Earthquakes to epic flooding to tornados to hurricanes, there are only a few disasters that actually give you time to plan. If the catastrophic disasters of Tuscaloosa, Alabama or Joplin, Missouri have any redemptive value it is in the hope people heed the warning and plan for these natural disasters.

Most of the time they happen with little or no warning. As chaotic as that can get for any family, for one with a family member who has special needs it can make the chaos ten times worse. Frequently we’re so caught up in the commotion of the day to day we aren’t thinking about whether we’re adequately prepared if something should happen that changed where we needed to live, or conversely, made it impossible to leave home, potentially for days at a time. Every single family should have emergency plans, not every one needs to have one quite as acutely as a family that includes a person with a disability.

  • Evacuation – whether it’s the available routes out of your home and neighborhood or the hurricane evacuation route you need to take for yourevacroute Tornados and Hurricanes and Flooding! OH MY! location, all of this should be planned well in advance and reviewed with all family members.
  1. If you have a member who is physically disabled, who will be in charge of making sure they get out in case of fire, tornado or flood? Who is in charge of the person with autism or an intellectual disability who may become paralyzed with fear and unable to follow the rules that have been carefully rehearsed in advance?
  2. If you get separated where is a safe place to meet? Sounds simple to assume now, nothing is simple when your house has been destroyed or the smell of smoke is choking you and the lack of visibility is disorienting you. The more it’s planned out and practiced, the better off you will be.
  3. If you need to get out of the neighborhood and trees are blocking your way, what are your alternatives if you need that vehicle to transport your family member. Figure out as many possibilities as you can. When I tell you that one of ours is to drive up a curb and through a park attached to our neighborhood, I’m not kidding. Not sure I’d think of that in a panic, but when I preplanned I realized our neighborhood only has one in and out and they are at the same location.
  • Equipment –  the emergency may make it that you can stay put in your home but you won’t have access to anything outside of your home – blizzards, ice storms and hurricanes all come to mind.
  1. Do you have a generator/should you consider a generator? Your house may be intact but services to your home may have been disrupted, frequently it will take days to return. It can make a great deal of sense to have a small generator (which should not be run inside the living area of your home) if you live in an area prone to electrical outages, but it could be critical if you need electricity for powering medical equipment or other equipment needed for your special needs family member. Whether it’s oxygen, IV pumps, Nebulizers, feeding pumps, or a small refrigerator for medications like insulin that require cool temperatures, you might not need one that powers the whole home but rather just a few critical devices.
  2. If you do have to leave, do you have backups for any of this equipment elsewhere if you can’t get it out of your home? Is there a place you can access or have duplicate equipment stored? A family member, neighbor, workplace or school might be a good place to keep a duplicate where and when possible.
  3. Have you contacted your electric company and told them you have a person who is medically dependent on electricity living in your household so that they can prioritize you in an emergency outage? Call them TODAY and find out what can be done to ensure they know you have a critical need for the electricity.
  • Medical Plans – medical for our family members doesn’t just mean making sure you have a supply of prescription medications that are goingmedicals 300x282 Tornados and Hurricanes and Flooding! OH MY! to last you at least a few days although that is of course a critical component. I know it’s hard between finances and insurance companies but always do your best to not be running on empty when it comes to medication. In a major disaster it may be difficult to access a pharmacy for refills. But it’s not just prescriptions that have to be considered medical for some of our kids…
  1. Do you have the right food? Specialized diets (low fat, low salt, GFCF, enteral formularies, ketogenic) may be more difficult to access so make sure you have a few days of food on hand. Whether you can’t access it because the stores aren’t opening,  you just can’t get out to get to the stores or you’ve had to evacuate to a shelter, making sure you can maintain a specialized diet is really important. Keep a plastic sealable container with supplies available with your disaster kit at all times and make sure nothing has expired, checking at least a couple of times a year.
  2. Disposables. You know, the stuff you probably have run out of once or twice with only a muttered curse and a quick trip to the CVS or call to the medical supply place. Ostomy bags, Diapers (especially for those who need specialized sizes), gloves, feeding bags, gauze pads, tape, needles, testing strips, chucks, instant icepacks (the ones in your freezer that no longer has electricity are now lukewarm at best) Make sure you have enough to get you through a few days.
  3. Sensory. Emergencies upset the apple cart in about a gazillion ways you can’t plan for. Plan for what you can. If you have a kid who has sensory issues whether mild or severe, minimize what is going to be an already upsetting experience by making sure you have things that are familiar to them. Everything from utensils to clothing can become problematic if you’ve left home on a moment’s notice. Button shirts borrowed from the cousin is a guarantee of a naked kid running around in our home because we DO NOT do buttons on the shirt. We have a few days worth of clothing he can manage to wear available. Pants as well as shorts. long sleeve and short. and a sweatshirt with a hood. (don’t ask, I don’t get it either) You don’t know what conditions will call for.  A familiar blanket is always good to have. Anything sensory that are triggers for your child and can be preplanned for are going to be critical as they may very well be in sensory overload. In an already foreign environment familiar food can be the one great comfort. Make sure you plan to have something they will eat. Cheerios for several meals straight may be less than desirable, but it’s not nearly as bad as a starving, miserable, sensory overloaded child.
  • Where to turn for help - preplan this as well. Yes, you should have a neighbor or family member you can turn to but even more so, help emergency responders help you. Many communities have registries set up so that the police, fire, and EMS personel know when you have someone who may need specific assistance in the case of a disaster or other emergency. Others have shelters specifically for special needs but you need to pre-register. Call them today and find out what is available. Most emergency services have a non-emergency phone number. If you’re unsure of it call your local municipal building or city hall to find out what it is. Where can you go with a service animal or pets? Your city personnel should know that as well and can help you get that information ahead of when you need it.
  • Records – make sure if there are vital medical records you would need to have access to you’ve planned for that. Whether its remote storage in a scenario like Medefile, a thumb drive with digital copies stored on it or paper copies stored in watertight bags in your Disaster Supply Kit, make sure they are updated regularly and that you don’t have to run around like crazy to gather them – you may not be able to.
  • Disaster Supply Kit – everyone (especially those of us living in disaster prone areas) should have one of these ready to go. Ours just gets more extensive than the average, needing to cover all of the above as well as the basics below. While the below is not an all-inclusive list, make sure you check out one of the emergency preparedness plans by FEMA and the Red Cross below which are far more extensive:

redcross 300x199 Tornados and Hurricanes and Flooding! OH MY! 1. Three-day supply of nonperishable food and manual can opener.

2. Three-day supply of water (usually considered 1 gallon of water per person/per day)

3. Battery powered radio, flashlight and extra batteries

4. First Aid Kit

5. Sanitation/Hygiene items: hand sanitizer, toilet paper

6. Matches in a waterproof container

7. Clothing and blankets

8. photocopies of identification for each family member and copies of credit cards

9. cash AND coins

10. kitchen accessories and cooking utensils.

11. infant needs, such as formula, diapers, bottles, and pacifiers.

This list isn’t inclusive. I hope it DOES  make you stop and think about what you and your family would need if disaster struck. FEMA put out a detailed outline of things to think of in planning for an emergency which you can access here. I also got one today in honor of Florida Hurricane Preparedness Week you can access here put out in conjunction with the Red Cross. If you have ideas or things you have implemented for your family don’t hesitate to add in the comment section below. Get to planning. There’s no time to waste!

 

Glee…YES, I absolutely consider myself a GLEEK! Proudly, I hold up my fingers in the glorious *L* and count myself among they loyal losers icon wink Glee Stars lend their voice to End the Word!

People who haven’t watched Glee may think it’s about a bunch of teenagers in show choir at their local high school who just get slushies thrown in their face because like pretty much every kid who has gone thru their respective high school music program – they are at the bottom of the social ladder.  That description would not be wrong, but it would only be the surface of the show’s premise. The underlying message is acceptance of people – all people – regardless of race, creed, gender, sexual orientation or disability. That each person has something to contribute to the greater good in their own way. Not that each is perfection but rather in their imperfection, together they make a greater whole. Even the most hated character, “Sue Sylvester” (played by Jane Lynch), who is evil, sinister and perpetually plotting against the “Glee Club” is shown to have a loving and compassionate side. Her sister, Jean, has Down Syndrome and Sue is a kind, doting sister to the elder Sylvester who lives in a group home.

Glee has several characters who have disabilities. Of course Sue’s sister (who was only a recurring character, ancillary to the storyline and passed away in the penultimate episode of season 2) is one, there was an episode in season 1 featuring a football player who was paraplegic because of a football accident. Those two are really only supporting characters although both used brilliantly. Two of the characters encompassed within the ensemble cast either have a disability, or portray someone who does. Artie Abrams (played by Kevin McHale), is a paraplegic who is in a wheelchair and he has been the focus of several amazing stories of acceptance, tolerance, growth and learning.

Last, but certainly not least, is Becky Jackson so wonderfully portrayed by Lauren Potter. Becky is an amazing character. When Becky tries out and wins a coveted place as a member of the cheerleading squad, the Glee Club teacher, Will Schuester, is concerned that Sue Sylvester is just up to some cruel joke at Becky’s expense. Will Schuester is even more incensed at how harsh Sue is being with Becky. It’s critical to understand Sue is harsh and awful to everyone, except her sister, Jean. One of my favorite sentiments ever conveyed has to be when Sue tells Will that all Becky wants is to be treated like everyone else and that is exactly what she’s doing. It may sound rough, but you can tell Sue really has taken this young girl under her wing. Becky has become Sue’s second in command.

Tonight, a new Public Service Announcment (which should be required viewing for anyone playing in the NBA these days) will air on FOX during Glee. I believe from what I’ve read it will air in the last 15 minutes or so of the show. It stars the sublime Lauren Potter and the divine Jane Lynch. I advise you however it is not for the youngest among us. At this point I won’t be sharing it with my son.

r word org 300x130 Glee Stars lend their voice to End the Word!In this PSA, a variety of people remind us of slurs that have been used throughout time to stereotype someone and degrade them and how each and every one of them have reached a point where they are largely not longer considered acceptable….with the exception of the R-word.

I hope that you’ll take a moment to share this. Whether or not your a fan of Glee, the message is no less powerful – Lauren and Jane are just that great. It’s one I’ve already shared with my eldest who cried when she related how someone had called her and her friend David that word and how she just KNEW it had been a bad word.

Damn.  The fact that the R-word had been used in that way against my kid when I wasn’t there to slap their faces educate them hurts me twice as much because of the venom it must have taken to make my sunny kid know that she was being degraded….unreal. Now she knows (and shame on me for not addressing it sooner) that this is a word it is NEVER ok to use or have used at you.

The PSA is supported by several national advocacy organization including the Anti-Defamation League, Special Olympics, Best Buddies, GLAAD, The National Action Network, The Hispanic Federation, National Puerto Rican Coalition, The Asian-American Foundation, AbilityPath.org and the NAACP.

Maybe you know someone who could use a refresher. I hope you’ll do me a favor and share this with them. The sooner you do, maybe the sooner none of us have to worry about another slur that’s only purpose is to degrade a population.

 

Really? 1 in 6?? I guess when you consider the ever increasing rate of autism and ADHD diagnoses, I shouldn’t be surprised. A USA Today article released yesterday, proclaimed this statistic in its headline. Some say the study underestimates the number of kids since some with learning disabilities are not diagnosed until much later. Either way, it’s a really shocking number:

More than 15% of school-age kids — about 10 million children — had a developmental disability in 2006-08, according to a study released Monday in the journalPediatrics. That’s up from 12.8% in 1997-99.

IMG 1841 300x182 USA Today article states 1 in 6 have developmental disability | OpEdIt doesn’t however mean that all of these children will need support services all of their life. As a matter of fact, in some respects I would think that the number of children being diagnosed rather than missed completely or pushed aside as lazy, slow or unmotivated means that these children more than generations before, have the ability to reach their full potential. How could that not be a wondrous and wonderful thing?

Well, because in this age of austerity brought on by crippling budget cuts, it seems that the first things that hit the chopping block are anything that falls into one of three categories: disability, education and poverty. A child needing special services is a double whammy. Those children who aren’t lucky enough to have parents who are pulling in 7 figure salaries or lottery winners will have an even harder road because getting intervention outside of the school will also be dramatically impacted. The underrepresented, the underprotected. The kids.

Turn the page in just about any newspaper from sea to shining sea and you will be hit with articles like this, or this, or even this. Funding is being cut everywhere and the public school systems across the country are feeling the pinch. More students requiring special education or related services is only going to stretch already sparse funding to the brink of disaster.

So what to do? It’s a serious question which needs serious debate by our elected representatives. There are plenty of places I can think cutting in the national budget  that would have less of an impact on our future as a country than reducing education spending. Our young are already falling behind so many other developed countries. The defense budget is just shy of 5% of the GDP which doesn’t sound like much until you look at the fact that its more than twice as much as what Russia, China, the UK and France spend – combined.

…the moral test of Government is how that Government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.

Hubert H. Humphrey, US politician (1911 – 1978)

Politicians of late have been quick to tell us that we have to cut back on entitlement spending if we’re going to reduce this deficit. Entitlement spending = Medicaid, Medicare, Social Security. The old, the infirm, the weak, the children. We’re told that people have to get used to the idea of an era in this country where entitlements as we once knew them no longer exist. To some degree I even understand and agree with that. The retirement age has to go up, medicare must have some serious reforms in how it’s managed, but what we must not do is be what my Grandma Murphy would have called “penny wise, pound foolish”.

Special education costs money. Early intervention services cost money (which are in many cases funded through Medicaid). The problem is that it’s looked at as money down the drain rather than the investment in the future it is. Money spent now on early intervention services and education as early as the developmental disabilities are identified will save money in the long run. Children who are taught how to work around a learning disability are young adults who can go on to college, or trade school and be productive, tax paying members of society. Children who have more complex needs have a much better chance of  being productive, taxpaying members of society with the proper intervention services provided early on. Even the most profound of those with developmental disabilities stand a better chance of being supported within the community rather than in intermediate care facilities with proper intervention and education that is aimed at making them as independent as possible. (According to testimony at recent National Council on Disability (NCD) hearing community supports costs approximately $27,000 annually compared to the intermediate care facility that would cost $75,000.)

If an astonishing 1 in 6 of our children are now being identified with developmental disabilities it is no longer acceptable for our representatives on either side of the aisle to ignore the very real crisis that is headed our way. The lack of funding for education and special education in particular is the slippery slope to a disaster for our country that is going to create a future society incapable of taking care of those in the shadows of life as it is proving to be in caring for them in the dawn of life.

I hope politicians on all sides can come together before that becomes the reality one in six of our children faces.

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