thespecialparent.comSpecial People Parenting Special Kids

Obviously the whole Tropic Thunder thing has touched me. I’ve seen those looks. I’ve seen them used at my cousin Edith. I’ve seen them used at my daughter Katherine. I’ve seen them used at my friend Joey at the local Publix. I’ve heard the casual use of the word retard. I have to tell you I don’t consider myself the most PC individual in the world. I guarantee you however I wouldn’t walk up to my friend Debra and use the “N” word. I wouldn’t walk up to my father-in-law and call him a “S”. I can tell you for certain however that if I did I feel confident that both these individuals would feel well within their rights to defend themselves and WOULD defend themselves – whether verbally or physically.

I think generally speaking, people at least think twice before they use racial or gender biased terms. I am pretty certain (my personal observation) however that people don’t think twice about degrading the people in our society who cannot defend themselves. What is it?? Is it the easy shot? How can it be so un-PC to speak about gender, race, orientation but its devastatingly obvious to me that the issue of bias against intellectual disabilities is viewed as almost a joke. A fairly prevalent note I have seen is that it’s PC gone “too far”. UH HELLO?? Its gone too far?? HOW SO??? Seems to me that for all the “equality” speeches that you’ll ever hear no one seems to think it means for people who are intellectually disabled – THAT’S DIFFERENT. Please don’t ask me HOW it’s different. I sure as hell don’t get it.

That’s why I was so happy when I was looking at my facebook account to promote the R-Word site I found the R-word cause started from what I can tell by a young man Soeren Palumbo. I’ve added it as my featured cause on my facebook account. But then I found a real gem I wanted to share with all of you. It’s just shy of 10 minutes but it’s worth it!! IF this works I’ve embedded the video here. If not you can see it by clicking here.

I saw Good Morning America this morning. I damn near lost my breakfast. I had to clean up the coffee I spit out. Ben Stiller said on NATIONAL TELEVISION that the people organizing protests (and I’m paraphrasing here) were raising a stink about stuff they had “heard” about the movie but had not seen it. Uh HELLO?!?!? Screening that your distributing studio arranged for numerous representatives of disability groups?? His argument that they are just “making fun” of the actors who “play disabled characters to earn awards” is completely disingenuous as well.  The argument we should have protested about Forrest Gump and Rain Man is as well. Both of those movies showed the worth of the individual with disabilities as well as the learning process those around them went through to gain acceptance for them and the positive force of love in maximizing their potential. Did I miss something???

Never mind – I agree with many who say this needs to be made a teaching moment and was thrilled to receive an email this morning with the following site being highlighted:

The R-Word – A Special Olympics Initiative

As the site itself says

Our choice of language frames how we think about others. It is time to ACT NOW and pledge your support to eliminate the demeaning use of the r-word.

Please take a moment to go over to the site and make your pledge and spread the word.

I can’t believe that time has gone by this quickly. Today is the second day of summer vacation in Georgia. I remember the good ole days when summer didn’t actually start until almost July…..of course then we didn’t start school until after Labor Day in September. But it’s just a different span until the kids go back to school. So for now I dream of August 4th and pray for the strength to make it thru the looooooong HOTlanta summer.

For a number of years Katherine was in what is typically referred to as Extended School Year (ESY). Basically its summer school. Not the kind of summer school you are thinking of where you’re being punished for failing a class (or more) during the regular school year. Really this extended school year is for special kids who would otherwise lose significant ground academically, socially, emotionally by being out of school for too long a period. While it is almost more loosely run than the typical school year so that students are having more of a summer camp experience than just sitting in a classroom. It can be a really great experience for the kids as well as serving an incredibly important purpose – keeping our kids in the groove schedule wise (incredibly important for so many special kids who need structure to maintain) as well as giving our children the continual reinforcement of academic goals and objectives. Usually these are the same ones that are included in the IEP during the regular school year or several that are picked for focus during the shorter summer program.

For years this has been something we felt was critical in maintaining Katherine – to a great degree I still believe it’s important. However this year her dad, stepdad, therapist and I all decided to opt for keeping Katherine at home during the summer. We have put a great deal of effort into preparing her for the transition to high school. There were a number of things about how summer school was going to be run this year that made us feel it might be working against all we had started up with the high school planning. I did alot of thinking about well if not in ESY what would we do?? Sitting at home watching TV just was NOT what I had in mind for summer vacation. With my current condition, going to the pool every day isn’t an option either. So what could I do to allow for some fun while doing our own “ESY” program at home.

We started to think about the life skills that we’ve been working on during the school year and the skills she most definitely needs remedial work on as well as what things I could reasonably accomplish at home without driving us both to drink (keeping in mind that in some ways she is still a typical teen and I am “just” a mom). So it occurred to me that some of you with teens who are going to need to work on independent living skills might want to think about doing some of these things as well. Maybe you’re lucky enough your kid knows these things already and if so could you send them to my house

• laundry – separating clothing into color groups (white, light, dark) detergent, fabric softener, bleach, reading care labels on clothing and using the washer and dryer. Folding clothing and hanging up items is something she already does
• meal planning – if Katherine had her way breakfast lunch and dinner would consist of pasta, pasta and pasta. Oh and drinks – LOTS of drinks. So we are going to work at planning every meal for the family for a week and what we have in the house to achieve those meals as well as putting together a grocery list for what will be needed to make those meals. We’ll incorporate looking at the weekly grocery store sales and what can we have for a meal that might be on sale.
• Grocery shopping – yes she’s been with me a thousand times and even helps me find things. But now we’re going to work on shopping for ONLY what is on the list (not the thousands of items put at every corner to tempt you to purchase something you don’t have the money for) and learning about things like expiration dates, how to read pricing on items, determining how much of an item is in a package. Of course this is years of teaching but we’ll start out with a few items and go slowly.
• Job applications – they have started working at school on filling out forms but honestly they are pretty simple. I’ve started to gather a few different forms that local companies that Katherine could reasonably approach about employment would have so if it’s not information she already knows (name, address, phone number, etc.) it’s something we can start working on now.
• Money, Money, Money – it’s one of her biggest downfalls – what things cost and the fact that just because we want it doesn’t mean she can afford it (and I know that’s 3/4 of the American population but I’m not taking on credit card debt theory this year) Also in this realm will be knowing if you got the correct change when you paid for something because unfortunately you can’t count on the person at the register to get it right, or worse yet be honest. We’ll also go into the bank to make deposits rather than my usual run through the ATM machine so she is being met and meeting people who she needs to interact with in the community.
• Personal grooming – for better or worse I do not have the typical female teen. She is less than careful about her appearance. Whether we like it or not, people judge you by your appearance in some way, shape or form. So this summer is about hair care (brushing, washing), face care (washing and those Brooke Shields eyebrows) and dressing appropriately which includes not only matching the clothing up in outfits that are coordinated but that once we have them on are we looking at if the shirt is pulled down, pants pulled up and how the whole head to toe look has come together.

While these are things we are working on I don’t have any belief we’ll hit perfection we have to start somewhere. These are all skills that she will need for the rest of her life and they will be working on many of them in school next year so no time like the present to get a head start. What kind of things are you working on with your kids that maybe others could be thinking about. I’m certain my list is far from inclusive on all the various skills our children need to work on. Share!

…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.

‘High School Musical’ production takes social inclusion to new level

One of the most successful Disney movies ever has been adapted to stage and performed by thousands of high schoolers across the nation but none possibly as inclusively as this one.

Stars shine at special needs talent show

Children at a local Ohio high school put together an amazing talent show ‘featuring’ Trace Adkins, Jerry Lee Lewis, Avril Lavigne and Soulja Boy.

Zambians pledge stronger voice in disability advocacy

A learning exchange between officials in Zambia and The ARC of the Twin Cities of St. Paul will increase advocacy for the disabled in Zambia.

Yoga’s appeal broadening to disability community

The ability to adapt this form of exercise to a multitude of disabilities makes its application almost universally beneficial.

Labour leader Gary Parent wins United Way Award

Gary Parent says he is humbled to receive this national award for doing “the right thing”

This prom is an enchanted evening

Everyone from parents to teachers to janitors kick in to make an ‘Enchanted’ evening for these special kids

U-46 holds first prom for special needs kids

Tuxedo rental: $150. Boutonierre: $10 Tickets for two: $50. The chance to attend a very special prom? Priceless.

It’s amazing that I got this article sent to me by my friend Johanna. It ties right into a conversation I was having with Katherine – ok well kinda. The conversation was had but since Katherine doesn’t have Down Syndrome it wasn’t exactly the same. What I loved about this article was it was so open and honest and from a teenagers perspective about how very much alike we all really are. Let’s face it – we’ve all felt that way. Heck half my teenage years were about struggling with the feeling of being different when in reality what was so different about me wasn’t different at all. Unfortunately, teens thrive on making what is a trivial difference and picking it apart till the victim bleeds. Metaphorically speaking of course.

It’s one of the things I am panicked by about sending Katherine to High School next year. Panicked that someone, in an effort to build their own self-esteem up, will feel compelled to do it by using my child’s as their stepping stool. Maybe if all teens were required to read what Melissa wrote they would learn her very poignant message:

Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

Please take time to read the whole article which I am both linking to as well as posting below

When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.

My mom thinks that’s silly. “Have you ever met anyone who didn’t like you because you have Down syndrome?” she asks me. She’s right, of course. (She usually is!)

When people ask me what Down syndrome is, I tell them it’s an extra chromosome. A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things. (For instance, some of my classes are in a “resource room,” where kids with many kinds of learning disabilities are taught at a different pace.)

When my mom first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different.

I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.

A Lot Like You
Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking!

Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology. She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year!

But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept.

Dream Job: Singer
I try not to let things like that upset me and just think of all the good things in my life. Like that I’ve published two songs. One of my favorite things to do is write poetry, And this singer my dad knows recorded some of my poems as singles.

Right now someone else is singing my songs, but someday, I want to be the one singing. I know it’s going to happen, because I’ve seen it. One day I looked in the mirror, and I saw someone in my head, a famous person or someone who was somebody, and I just knew: I will be a singer.

It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.

See Me
But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about.

Maybe that’s why I write poetry—so people can find out who I really am. My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper.

I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

After all, I would do the same for you.

Listen to “The Ring”, the song that Melissa wrote!

Last night I finally got to watch my TIVO’d  recap and results show for Dancing with the Stars (have to make sure Marlee gets through to the next round) and found that what I took from the show wasn’t really anything to do with Marlee although I’m sure she could have said the same thing. It was from Monica Seles who beautiful and talented as she is – God has not gifted her with great abilities in dance. And hey – that’s ok.  She readily acknowledges that this experience has fallen well outside of her comfort zone on so many levels.

A good lesson for us all and one that Marlee has been teaching us with her stint and many of Monica’s fans have learned hopefully as well.

There are things that constantly stretch my comfort levels with Katherine as she grows into a young woman as opposed to the baby I am too often caught up in thinking of her as. Even so there are always things I have to tackle in the short term – things that most assuredly mean that I have to see her as the big girl she is – in the immediate, while remembering that I will still need to adapt big people things to a level at which she can comprehend and cope effectively with so many challenges I still wish I could protect her from for many years yet.

But as so often happens time is marching on. Honestly it’s marching faster than I’d care to see it go and faster than I can sometimes keep up with, especially on crutches (yes I am currently on crutches). Frankly we are so far outside of my comfort zone as I prepare to prepare Katherine for things that are likely outside of her comfort zone, I hope and pray I’m up to the challenge. While I am unlikely to make them all as palatable as dancing, the hope is  that I can make growing in to the extraordinary young woman I know she can be as exciting, enriching, and as smooth a process as humanly possible while minimizing the inevitable pain along the way.

While this isn’t necessarily a task unique to parenting a special needs for me at least I feel like for a child with developmental delays it presents unique challenges and struggles. Obviously Katherine as a 16 year old doesn’t take in things like a 16 year old does and for me the challenge of interpreting those things into 6 year old speak is not always so easy especially when they are truly “grown up topics”. All of this is transitioning Katherine into the more adult world she will spend the remainder of her lifetime in and will need this information and the skills we will be building to cope in a world well beyond her in many ways and in other ways the world could use quite a few more Katherine’s.

So as Katherine and I travel outside our respective comfort zones over the next few weeks and months I’ll do my best to share the ups and downs and the things we’ve learned along the way.

On a side note:

I appreciate you bearing with me the past couple of days of absence. One of these many changes that I will have to be teaching Katherine is about the loss of people you love. I was dealing with my own personal feelings about this the past few days and how I’m going to help Katherine as well as myself through this journey and I appreciate your understanding of my unexpected absence.

…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.

Trip planned to protest cuts to special needs program
An Alabama woman is planning a trip to the state capital on Wednesday to protest proposed cuts to the state’s Early Intervention Program.

Special needs music box artists share their gifts
Art Access is a place for people with differing abilities to come together and grow creatively by learning about art and each other.

Disability no barrier for Gaither Athlete
High School sophomore Casey Garber says he’s not trying to prove anything by competing in track and field just because he has cerebral palsy.

Program targets kids with special needs
Pennsylvania Parks and Recreation program has started two programs for children with special needs and their parents

Bid to turn Castlehyde Hotel into care centre for special needs kids
Bid to take a hotel closed in 2005 and turn it into a day care center for children with special needs.

Advocate brings disability awareness to students
Kokomo students learn about difficulties people with disabilities face in everyday life in an event that Russ Ragland has brought to the High School for the past eight years.

Prime Time Disability
While its becoming more common to see people with disabilities on primetime television, unfortunately it hasn’t broken it’s habit of using able-bodied actors to fill the roles.

I am something of a tv addict. One of the shows I love is Dancing with the Stars. Part of what draws me to it probably has something to do with the fact that for some reason my husband is willing to watch it with me. But I do get some satisfaction from watching people stretch outside their comfort zone because lets face it, most people do not have a comfort level with ballroom dancing.

Now we’ve had soap opera, movie and other tv actors and actresses, singers from 70’s music to country to R&B, olympic athletes, football players, comedians, broadway stars, race car drivers and on and on…..a truly diverse group of individuals. Differences aside, there is one thing they all had in common. They could hear the music.

This season Marlee Matlin, youngest woman to win an academy award in the best actress category and more recently seen on The West Wing, The L-Word, Nip/Tuck and Desperate Housewives is trying out her dancing shoes which is all the more amazing given the fact that Marlee is profoundly deaf. I watched last night in sheer astonishment and joy. Look at that girl dance!!! I am certain she feels the rhythm to some extent but she’s really at the mercy of her partner Fabian Sanchez. He must need to give her certain cues to make sure it comes together and there is no denying whatever they are doing is working.

This will be my example to Katherine of never saying “I can’t do that”. Sometimes Katherine is quick to say she doesn’t have the capability to do something.  I feel badly about it because maybe I’ve protected her too much. Yet I try with all my might to open her world to as many possibilities without telling her she can go to Harvard and be a neurosurgeon.

The point is this though. I doubt anyone told Marlee Matlin as a young girl that she could dance. Competition ballroom dancing just isn’t one of the things you typically do if you are profoundly deaf and yet – why the heck not??  I doubt anybody said “Oh honey absolutely you’ll be an academy award actress!”  What I love about Marlee Matlin most is that Marlee does what Marlee wants – not necessarily what she “should”.

What a great role model she is for her 4 children. What a great role model she can be for our children. Proof that if it’s something you want to do by all means you should try. I don’t know about you but it’s a good lesson for me too. Sometimes maybe out of a desire to protect my ‘baby’ (yea my 16 year old baby) I don’t allow Katherine to stretch as far as I should or she could. I think maybe I will be going out to get some dancing shoes. Thank you Ms. Matlin for allowing your actions to remind me of what Eunice Kennedy Shriver said at the first opening ceremony for the Special Olympics:

In ancient Rome, the gladiators went into the arena with these words on their lips: ‘Let me win, but if I cannot win, let me be brave in the attempt…’

Let me too be brave in the attempt.

…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.

School’s Basketball team adds special needs children
Middle School Basketball team in California shows what the true meaning of sportsmanship is with inclusive basketball team

No Dental Care for Special Needs Patients
Adult special needs patients in Cork, Ireland are going without even basic dental care because of the lack of anesthesia services

Profile: Melissa Piotrowski teaches music to special needs students
22 year old Melissa Piotrowski takes a love of music and shares it with special needs children

11th Berkshire Disability Day planned
Event is a day of celebration and education to increase community awareness of the accomplishments of those with diverse abilities. Showcase of available services also planned.

Book transports child with special needs
Photography teacher Joe Baltz has his students create a 16 page book starring a child with special needs.

Alzheimer’s, Down’s link sheds light
Researchers at the Byrd Alzheimer’s Center and Research Institute say they have recently learned some important new things about the link between Alzheimer’s disease and Down’s Syndrome

My baby, right or wrong
Woman chooses not to test unborn child for Down’s Syndrome and the reasoning behind her choice

Children with, without special needs paired by program, to benefit of both

Last week I wrote about how I thought that peer mentoring programs could benefit children by diminishing the possibility of bullying or harassment by other peers. This article in the Daily Press, a Virginia paper, highlights a program in York County utilizing this very concept. The brilliant thing about it is that it starts at the best possible time – pre-school.

It’s interesting however to note that the thought process that seems to have been used in putting this program into place is that this program gives the special needs child the ability to mimic their “typical” peer and therefore gain valuable skill development – both social and developmental. Certainly this was always a legitimate learning tool for Katherine.

As a young child in daycare, Katherine was placed in with children who were chronologically in the same age range as she was and we saw two things happen. One was that Katherine mimicked her peers in the classroom. The second is that because Katherine wanted to do what others in her classroom were doing she worked to figure out how to accomplish the task that much harder. She might not have done it exactly like her peers but she sure did find her own personal workaround.

The perfect example is crawling. Katherine would see her peers crawling around the room but because of physical weakness in her shoulder she couldn’t do exactly what she saw others doing. Her drive to be as mobile as her peers however had her work that much harder to find a work around. We called it butt scooting. It was this push up with one arm and her legs that she used to propel her butt forward and move. Brilliant. Would she have figured out mobility without the peer interaction? Possibly, probably. Was it a help?  In my untrained opinion – it was an essential piece of the learning process.

Of course exposing typical children to our special kids is just as beneficial to them as it is to our children. As pointed out in the article – “You learn something better if you teach it yourself”. These children are in essence – mini teachers. They help teach and they benefit because the lesson is that much better learned having not only learned it but interpreted that learning into teaching the same concept.

Better yet, when it’s possible for children to be in this setting the mini teachers are also learning – learning at a subliminal level in many ways. By this daily exposure to children with a variety of disabilities, typical children learn about people being different and yet, not all that different. What the children in Katherine’s daycare learned was that while Katherine might learn differently and might approach things differently than they did physically, she liked pizza at lunch as much as they did and looked forward to seeing the Barney video at rest time just like they did.

This is the beginning of understanding and breaking down prejudice that comes from fear which always springs from ignorance. Seems only right that ignorance be eradicated by education and that education starts with our young in school. Win-Win situations are always best and this seems to fit that definition to a T.