"The Good" Deeds of the Able-Bodied

Welcome Back, everyone! Well, that's enough of an introduction. Let's get to it.

I was scrolling through Facebook a few days ago and came across something interesting. Facebook, as we all know, has become a dumping ground for the sharing of memes and viral videos. I usually scroll past such things but occasionally I'll find something that catches my interest.

Recently, I saw that one of my Facebook "friends" had liked a video of a little boy helping his friend score a goal. Note: the boy's friend is disabled while he is not.

The video starts out with both boys on the ice. The friend, of the child who I believe has Down Syndrome, slaps a puck over to him. The boy catches it on his hockey stick and tries to shoot. He misses. His friend then retrieves the puck and gives it back to him so he can try again. Again, he misses.

I'll save us some time: The special needs child misses every time. However, each time, his friend retrieves the puck so he can try again.

By the end of the video, the special needs child is inches from the net. Finally, the goalie, "subtly" jumps out of the way, although he could've easily swatted the puck away. The puck goes into the net.

Scrolling through the comments, I saw people wrote things like:

 "Faith in humanity restored." or "What great kids for doing that for their "special friend". Every once in a while, I'll see a video of an able-bodied student asking a special needs student to prom. It will be a big to-do and of course, the special needs child will be overjoyed.  

Now, every time I see one of these videos, it used to make me feel good. However, as I started looking at the comments on these videos the more annoyed I became. These comments all have one thing in common. They continually praise the able-bodied friends.....for doing what friends do.

Now, I have said this before and will say this again before my time on this blog is finished:

DISABLED PEOPLE ARE PEOPLE!

Of course, we appreciate the things our friends do for us especially, when they have to change plans because we're around. Any time anyone has ever accommodated me I have said thank you.

However, I have never felt bad for.... "causing trouble".

I don't feel like my able-bodied friends are doing me a favor by hanging out with me. If one of them invited me to a dance, I wouldn't idolize them for being so thoughtful (of course, this probably has more to do with the fact that I HATE dances).

On a similar note, when I go out to a restaurant, I don't feel gracious if there's a ramp or an elevator going into the place.

Why you ask? It's because I deserve the same experiences as anyone else. I'm not going to feel indebted to someone who's just letting me live my life.

Other people fail to realize that special needs kids do have lives, just like they do, and that's the reason that we praise others for doing good deeds. Because we consider those who are different from us and that appear "disadvantaged" to be in need of our help (on our terms, I should add). Having a hard time believing me?

Let's say that one day, in high school, you were in the lunch room with your friends. You noticed that a few tables down from you there was a student sitting by himself or herself. This student could've been disabled or not. It doesn't matter.

 Now, what did you do? Chances are that you invited them to sit with you. They may have even sat at your table everyday for the whole year.

If they became your friend, great! Good for you! However, I'm going to assume that, at least for the majority of people reading this, that didn't happen. Sure, you saw them everyday at lunch for the whole year but you didn't talk to them outside of that one period.

Why didn't you? The answer is likely: because they were different. It's not like you were embarrassed to be seen out with them. It's just that you didn't consider they did the kind of stuff that you do because they were different from you. It's not your fault.

Our society embraces diversity, but it's weird, we also keep it at an arm's length. Too much diversity  makes us uncomfortable because we can't grasp other people's cultures.

But stop to consider this: if we tried to get to know more people who weren't like us, if we saw a glimpse into their lives, how different would they really be?

 You've probably heard that line before. We say we promote diversity but personally, I don't think we do. At least not nearly as well as we should be. Our world isn't perfect and the people even less so.

But, we are all people and we all deserve to be recognized that way. We're all just rollin' through this life. Why not take this journey together?


That's all for now! See ya next time!

7 Tips to Get You and Your Child Through Elementary School

Last week, I began to address the question that all parents of children with disabilities face: My kid has a disability, now what? That is the question I'm going to continue to answer today.

One way that parents of able-bodied and disabled kids are alike, is that they are terrified of the day their child starts school. From birth until the age of three, your child has been in a bubble that you've created. Their routine consists of napping, watching television, eating three meals a day, and more napping. They've been under you and your spouse's watch the whole time; even when you're out in public they're in your grasp. Any incidents that have occurred have been scary but always manageable because one of you has been there to resolve it; now that is about to change.

I don't need to go into detail about how you might be feeling. You know. What I will do is give some tips on how you can get past this fear and make your child's transition into the world of education smooth. Let's go!

1. Get a note from your child's doctors and therapists documenting their needs: Before your child begins school you need to know what his or her needs are. Does your child have a learning disability? What help will he or she need to accommodate it? What limitations could a physical disability cause in a school setting? How can those limitations be catered to?

These are all important questions to find the answers to because you'll have to share this information with school faculty and administrators. They need to know what strengths and weaknesses your child has as a result of his or her disability so that they can provide the best services to him or her. Of course, you need to know your child's strengths and weaknesses too because you're their parent; you shouldn't be caught off-guard.

2. Visit the school prior to the start-date: Scheduling a personal visit in order to share information about your child's condition with teachers, principals, and administrators as well as to get more information about the school district and its services is a good idea. You and your spouse will need a closer look at the ins-and-outs of the school to make sure it can cater to your child's needs. If there are issues, address them.

(Side note: If there are other parents of disabled children in the district, reach out to them. They'll give you an unbiased opinion of the district and might share tips for getting through the year.)

When meeting with the district administration as well as school faculty members tell them about your child's condition but also about your child. Who are they as a person? They need to know your child first and the disability second. They are teaching your child. They are not teaching the disability.

And oh yeah, when attending any school meetings about your child......

3. Attend All School Meetings With Someone: This is a general rule for just about any significant meeting regarding your child whether it be at an IEP meeting or a doctor's appointment. According  to Spokane Community College, human beings only retain about half of all information given to them on a daily basis. As days and weeks go by, we slowly forget the information. This is a problem when it comes to making decisions regarding your child and when taking in sensitive information.

Your kid will be under constant review by their school's special education department. They will document any challenges your child has throughout the year so that come IEP time, they can look at ways to beat these challenges. This means that school meetings are not always going to be pleasant. So, you'll need another person in the room with you to make sure all the information you're presented with is absorbed. You need to make educated decisions about your child's well-being but cannot do that without hearing all of the facts.

Courtesy of Speech and Language Kids

(Side Note: Your spouse is always the number one choice but if they can't make it to the meeting invite someone who's a good listener and that you trust to come along.

(Side note #2: You can't just request Individualized Education Plans. You need to first get the note from your doctor detailing your child's condition. Then, the school has to set up a play-based assessment which is just as it sounds; I'll post a link about what the assessment entails below. Only then will the school get your child set up with an IEP.)

4. Correspond through journaling with your child's paraprofessional or teacher: Surprisingly, this is a perfectly acceptable, non-helicopter parenting, action. Like I said, those on your child's educational team are going to be constantly observing your child, directly or indirectly. Since this is always occurring there is no reason for you to be blindsided come IEP time.

To stay in-the-loop, this journal will be a source of communication between you and your child's educational team. The communication should be focused on any problems that your child has on a day-to-day basis in the classroom--usually of a behavioral or medical nature but it can also focus on academics. For example, if your kid didn't sleep well the previous night, let their aide know so that exhaustion is not mistaken for a bigger problem that needs to be addressed.

And now a couple of tips about the finer points of education: friends and field trips.

5. Go in and talk to the class prior to your child beginning school there: Elementary-aged kids are lucky enough to not be judgmental jerks. Of course, they're still kids and any difference between them and their classmates will spark their curiosity. You don't want your child to be bombarded with questions about their disability within their first weeks of school so, if the school allows it, go ahead and speak to your child's class about his or her disability. Answer any questions they may have about your child's condition so, your child can focus on making friends without a barrier between them and their classmates.

(Side note: Obviously, don't do this with your child's knowledge. Your child shouldn't even be there on the day that you do it.)

6. If a field trip is coming up, make sure your child can go on it: Although it may seem that the school has everything figured out in regards to your child; they forget stuff. For example, in fifth grade, I went on a field trip to Midewin National Park in Wilmington, Illinois. I was told it had an accessible pathway. 3 hours later, my dad and I were exhausted from walking through wheat fields and rocky terrain.

 No matter the disability, the field trip should be accessible to your child and the school needs to be held accountable for making sure your kid can go on it. Any problems that may arise in planning the trip need to be brought to you and your spouse's attention.

If your child is physically disabled make sure the school has gotten a handicap bus. If your child's class is going to see a show but, your child has autism and doesn't like loud noises, pack a pair of headphones in his or her backpack. Just inform his or her aide that the headphones are there.

Also, any faculty on that field trip is responsible for your child. Make sure they know that. Your child deserves to enjoy the finer points of education as any other kid.

(Side Note: If your kid is physically handicapped, see if your kid can invite kids on the bus with him or her. No need for your kid to be separated from their classmates if they don't have to be.)

(Side Note #2: In the instance that the school just cannot accommodate your child on a particular field trip, pull them out of school that day and take them somewhere special.) 

And for one of the most important tips, I can give you...

7. At the end of your child's school year, write a thank-you email:

Your child will have a lot of ups-and-downs throughout the year. However, as long as the school is doing right by him or her, everyone involved in your kid's success deserves a thank-you. A lot of correspondence between you and your child's school will be about the problems your child faces. This doesn't mean that the school isn't doing their job or that your kid is doomed. The problems are simply more important to address right away.

However, once summer break comes along, it is time to push all the problems aside and show gratitude. After all, without the help of the special education department and your child's teachers, your child wouldn't have made it this far.

Well, that's all for this week. As always, comment if you like what you've read and if you don't; comment and help me improve! Talk to ya later.

P.S. Here's the link detailing play-based assessments: http://speech-language-pathology-audiology.advanceweb.com/Article/The-Power-of-Play-Based-Assessment-2.aspx

A Prelude: An Open Letter to Parents of Newborn Babies with Disabilities (And Their Friends and Loved Ones)

It seems that in American culture, having kids is like a rite of passage. You've learned everything that you could have in the past 30 years or so, and now is the time to pass on that knowledge to another human being, one you've created and hope not to completely destroy. When you find out you're having a kid, the wine bottles come out, the confetti poppers go off and you crack open the ol' phone book to share the happy news! Of course, when you're going to be the parent of a newborn with a disability, this experience is a little different. Imagine this:

One of your girlfriend's closest "friends" hasn't visited in awhile. Luckily, you were hoping for the absence of this acquaintance. You and your girlfriend set up a meeting with the doctor hoping for some good news and... he has some! You're pregnant. Congratulations! You schedule routine ultrasounds and checkups, just to make sure everything is copacetic, through those many months of your significant other holding a human being inside of her. You both read every baby book there is-- What to Expect When You're Expecting seems like the most efficient one. You buy strollers, diapers, changing tables, and playpens etc. You begin constructing the baby nursery and decorating it with clown wallpaper and sports memorabilia, in an attempt to brainwash your child into one day giving sports corporations money, based on their belief that they're part of the team. You even start picturing your kid as the next Wayne Gretzky or Babe Ruth, after all, you were quite the athlete as a teenager. Then one day, you get a call from your doctor. He wants to meet with both of you. You get down to the doctor's office, he calls you in and sits you down, and begins to tell you that something is wrong.

His medical team was looking at the latest ultrasound and found something amiss. To be sure, they need to do another ultrasound. You sit in painstaking silence as you hold on tight to your wife's hand. The nurse tries to make small talk in an attempt to soothe the situation but, it's no use. Neither of you can talk, you can only worry about what's wrong. Fifteen minutes later, as you're waiting to be called back into the doctor's office, both of you are silently panicking. When he finally does call you both back in, he wastes no time. He tells you that, your baby will be born with a disability. The minute you hear the word "disability", you hear nothing else. In that moment, you're staring blankly at the doctor, glancing over at your spouse, and trying not to let your emotions betray you. But they do. A few tears begin to drop. You and your spouse begin to think but don't dare to say it:"Why us? What did we do to deserve this? Where did we go wrong?

When you leave the doctors office these questions and several others are still racing through your mind, through the next few days and popping up through the next nine months. For a few weeks, you ignore people's phone calls. How are you going to tell your friends and family?

Eventually, you and your spouse decide not to be beaten. Enough is enough. My child has a disability, so what? You call people back. You gather all the strength you can and you push through the next nine months, side-by-side. You both falter in your strength at one point or another but you use each other as a crutch. Nine months later you have given to the world the greatest achievement the average person can, a new life.

So, what is the point of me mentioning this struggle? What piece of advice could I possibly give without having a disabled child of my own? It's simple really, I was that child. My parents and every parent of a child with a disability would have never dreamed that they'd be put in that position.
However, they were.

 So, how'd they get through it? They decided that yes, their child was going to be different. Their kid would grow up and face obstacles every day of their lives and they would face them too. However, they had to decide that their child deserved anything and everything that able-bodied children would have. That's what parenthood is all about after all, right? Giving your child everything that you never had? Yes, there will be challenges along the way but that's all they'll ever be, challenges. We are all challenged every day. Your child will just have slightly bigger and more frequent challenges. Remember: The child has a disability, THE DISABILITY DOES NOT HAVE YOUR CHILD.

I believe that what's most daunting to new parents of children with disabilities is that they feel alone. Even though they know they couldn't possibly be alone, they feel like they are. They don't know how they can even begin to get help. The good thing is in this information age, support resources are not hard to find! The other good news is that my blog is meant to be anecdotal and informational.

Next week, I'll be sharing some tips for parents of newborns with disabilities. However, I'll start with a couple basic ideas right now.

Learn as much as you can about the disability: What is it? What kind of challenges come with it? How can you best accommodate the situation? Don't overwhelm yourself with information but learn enough to be able to educate others and not be lost during doctor's visits.

(Side note: There are organizations that are dedicated to certain disabilities. Reach out to them and  get involved with them. Go to expos and conferences if they have them. Get to know people through them that are going through the same thing as you and your spouse. The people that are going to help you the most, are the people that can empathize and that are educated on your situation, which means.....)

Courtesy of abilities.com

Once you are educated on the disability, educate others. Family, friends, teachers, therapists etc. Anyone that is going to have a close and personal relationship with your child in his or her formative years needs to know about your child's condition. (How they'll be able to help you, will be talked about in the coming weeks).

One thing that my parents have taught me is that parents really do know their children--at least when it comes to medical history. You need to try and understand as much about your child's disability as you can because, you need to make sure your child is getting the most out of services offered to them, mainly when it comes to medical problems and schooling.

Speaking of dealing with doctors, if the doctor you're seeing isn't willing to listen to you, find another one. It's not like you'll always know more than the doctor but you're the one spending the most time with your kid. You know how your child behaves and you know when something isn't right. Usually, you'll keep track of anything in their routine that changes. If you go to the doctor and consistently feel like you're being shut down, that doctor is not looking out for your child's best interest. Have a team of doctors on your side that are going to work with you and, politely rather than dismissively, tell you when you're wrong.

The first few years of your child's life will be daunting. It's a lot of research, monitoring, deciding what's working for them and what isn't, and making connections with the right people but, don't worry, you've got it. Take it day-by-day.

That's all for me this week! Leave a comment if you like what you've read and I'll see ya next week, where we'll be navigating the world of "special" education!

P.S. There are Abilities Expos held in select states during the summertime.
Visit http://www.abilities.com for more information about when and where they are.