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Author Archives: Laura at Kokua Network

Play Ball!

Got Special Needs? Play Ball!

My special needs kid plays baseball. He also takes gymnastics and swimming, and plays soccer.

Years ago, I never would have believed these things could be possible.  It was all we could do to get our typical kids to hold their own in some of these sports. How, then, is it possible that my special needs son can do these things?

It turns out, there are programs for kids like him.

It started with soccer. Someone told me that they heard about a free soccer league for special needs kids. We decided to try it out—I mean, it’s free, right? If it doesn’t work out, no big deal.  The thing is, it worked out. To be honest, he doesn’t get much out of the games. But the practices? He loves them. However, I suspect that his favorite part is the snack at the end.

Next, we tried baseball. Again, this is a league entirely for kids of all ages with some sort of special need. Some games go well, some don’t. However, he’s out there, playing, wearing a uniform, and, of course, getting a snack at the end.

Then we tried swimming. He had taken lessons when he was younger. But when our other kids joined the swim team at our local pool, I thought I’d ask if anyone there could give our son some lessons. Their response? Just sign him up on the team! I was incredulous. I again explained that he would never compete, and that he would take full one-on-one supervision. Again, they insisted that I just include him in regular swim team practices. And so I did—and he was included in all team activities that he was interested in, but never forced to compete in a swim meet.

Next, we learned about a Special Needs gymnastics program at the local YMCA. On Sunday afternoons, in a near-empty, fully-equipped gymnastics training facility, the instructors work with him on the bars, tumbling, and—his favorite—the trampoline. He loves it.

In the past few years, I’ve learned some important things.  The families of special needs kids are awesome. On the soccer field and baseball diamond, I see men, women and kids who are absolute heroes. Together, they cheer on their kids and siblings, helping each other when necessary, and laughing together at all of the many things that can go awry on the field. Nowhere else have I seen such shining examples of sportsmanship and camaraderie. A kid and his walker fall to the ground during a soccer game and we all hold our breath; then we let out a group cheer when he pops back up grinning and giving his coach the thumbs-up sign. We all cheer “Go!” when a little boy hits the ball off the tee and starts running for first base, then yell “stop!” when the kid decides to just cut across the center of the field, stripping off his t-shirt in his excitement. These families all share in each other’s joy each weekend—for one glorious hour we are all just playing in a field. If you have never done so, check out your local soccer or baseball league’s Challenger team. If you have a kid who would qualify, I encourage you to join the team. If not, do yourself a favor and go watch a game. It will be the most uplifting, heartwarming thing you do for yourself all week.

I’ve also learned that there are many people who, despite not having special needs kids of their own, will bend over backwards to accommodate our kids in any way possible. Whether they are teaching gymnastics or swimming, or encouraging a special needs kid to join the ‘regular’ team, these people take on our challenges as their own. It is people like this who regularly restore my faith in humanity. The best part is the example they set for the other, ‘typical’ kids. Every time a coach takes on the challenge of working a special needs kid onto the team, every other kid on the team learns from the coach’s example of inclusion and good sportsmanship. This is how we build acceptance and inclusion, and how we develop young athletes into young men and women with good character.

Tell us about your experience with sports and other activities. Have you found something that ‘clicked’ for your kid? Has a special coach or mentor gone out of his or her way to include your child? Have you ever cheered at a Challenger baseball game? Tell us in the comments section below!

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Autism Awareness- One Family’s Story

It’s Autism Awareness Month, in case you haven’t heard. As a family who has been living with autism, our observation of this month has changed over time.

Our son was diagnosed with autism three days before the very first Autism Awareness Month. The timing couldn’t have been better, and, in some ways, worse. The continual media coverage was immensely helpful in educating our families, our friends, and ourselves about what autism means, what it looks like, and how to treat it. However, at times it felt a bit suffocating—as though we weren’t given any space to process our son’s diagnosis on our own time. Every time Larry King or The View featured a story about autism, our phone rang off the hook with well-meaning loved ones wanting to share what they had just learned.

However, despite the occasional discomfort we may have felt, we are appreciative that our son’s diagnosis occurred at a time when so much attention was being given to kids like him. This new spotlight on the disorder has benefited him and us, because it meant that in a short time period, science and education have made massive strides in understanding and treating what can be a very mysterious diagnosis.

Those first few Autism Awareness Months were also very helpful in enabling us to educate our other kids, as well as neighbors and friends. Each year, we noticed the schools did more and more in that month to inform the community about autism, and our family reaped the benefits of the resulting inclusion efforts.

In the past few years, however, the focus has shifted a bit for our family. While we still acknowledge the importance of awareness and education, and we certainly appreciate the boost in research funding that comes as a result, we have taken a less hands-on approach to the annual awareness efforts.

I can’t quite put my finger on exactly why that is. I suspect it is probably a combination of things. First, anyone who has ever met us at this point has come to learn a great deal about autism, either on their own or through contact with our family. So we have less of a practical need for teaching people the basics.

In addition, because this month comes right at the anniversary of our own diagnosis, it is often a time of personal reflection for us. What have we accomplished, as a family, in the past seven years? How far has our son come? Where do we see him in one year, or five, or ten? Notably, some of the media coverage this month provides has given us some exciting possibilities. For example, the Wall Street Journal just ran an article describing how some companies are actually seeking out individuals with autism for employment, due to their precise nature and attention to detail.

Finally, sometimes we use this month to give ourselves a little bit of a break. Let the world take care of autism for a few weeks, so we can take just a little time off from constant advocacy. Coincidentally, last week my husband and I did just that. Somehow the planets aligned and, through the kindness and generosity of friends and family, we found ourselves on a brief kid-free vacation.

Maybe that’s the best thing that Autism Awareness Month can do for us right now. For a month, let CNN and The New York Times educate and inform the world about autism. Let those of us who deal with autism daily take some time to recharge and refocus (either through a physical vacation or just a psychological one), and take a moment to appreciate the great strides in awareness that have already been made. We know that, without the annual information blitz from autism advocacy groups, our lives would be more difficult. Yes, we have a long way to go, and the day-to-day struggles are not for the faint of heart. But when I look at how far we have come, and how much support we have received from our community, I can truly appreciate what those awareness efforts have done for us.

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The R-Word

We have a very special video to share with you today. Today, March 5, is r-word day, and our friends the Hollis boys have made another fantastic video to “Spread the word to end the word.” They have shared the video with our members and readers and we think you’ll love it just as much as we do.

Check it out!

Also—if you haven’t seen the Hollis boys’ first video (the one that swept the nation and ended up being carried by news and video sites all over the country), here it is:

For more information on the r-word campaign (and to take the pledge to “Spread the Word to End the Word”) click here: http://www.r-word.org

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The Living, Breathing IEP

This post is about three little letters that mean big, big things to any special needs family.  Yes, I’m going there. I’m talkin’ IEP.

To be honest, I had another post about something entirely different half-written, and I’m going to have to get back to that another time.  Because I just got back from my son’s IEP meeting and realized that I have to write about that right now.

Let’s start with a disclaimer:  this post is not intended to be an exhaustive resource on what to expect from an IEP meeting, or how to effectively advocate for your child within the meeting. (For some awesome information like that, check out these articles: The 504 Plan versus The IEP or The IEP Team.

This post will be more about our own personal experience.

And, for the most part, that experience has been (surprisingly, perhaps), very good.  From the beginning, our son has had an extremely dedicated team of insightful, enthusiastic, professionals; people who have all worked well together toward a common goal.  Crazy, right?  I know that can sound like a very unusual thing to those of you who have been down this road.  There has been no screaming, no crying, no walking out of the meetings and refusing to sign the forms.  We have never once considered removing our son from the school for any reason. (I know you’re thinking, “what is she smoking?”).

We’ve been very, very lucky.

This year, though, has brought some changes.  Still no screaming or fighting, but changes nonetheless.

This year, for the first time, when I read the document prior to the meeting, I saw the first indications that some changes that the school and teacher are suggesting seem more motivated by what works for the school than by what works for my son.

So, now what?  What do we do now?  We like these people, our son likes these people, and we think that so much of what the school is doing is good stuff.  But how do we advocate for our son in the meeting without, you know, screaming and yelling?

My first suggestion, if this happens to you, is to do whatever will help you work on those emotions before you enter the meeting room.  Your child is best served if you are calm and focused, so work out your emotional stuff separately.  Figure out whatever you need to do to get you to your place of Zen. For some, that involves prayer, long walks, yoga . . . For me it involved a treadmill cranked up to “sprint” and really, really loud gangsta rap. To each his own.

Because I had seen the IEP document before the meeting, I had a pretty good idea of what changes the school would be suggesting.  So I did some research and I went to the meeting with documents, notes, and questions.  That helped me stay on track and make sure I didn’t get sidetracked and miss something important (Easy to do when a dozen people are discussing a 49-page document).

Throughout the meeting, I took more notes.  I listened to the points that the various educators and therapists were making. I showed them the respect that any true professional deserves.  I think that’s important.

In the end of the meeting, when I felt that some things still didn’t sit right with me, I asked that certain paragraphs (called SDIs) be added to the document before I sign it. Remember, this is a legal document.  For example, I am ok with some changes being made from now until the end of the school year, but I don’t necessarily want those changes to continue into next school year.  So I asked for an SDI requiring the team to revisit these changes in the first month of the new school year.  Turns out, you can do that.

But…some things still did not sit right with me.  So, at the end of the meeting, for the very first time, I refused to sign. I didn’t yell or scream.  I just said, “You know…I’d like to think about the wording on some of these things.  Can you send me some backup information about these changes for me to read, and can I take this home with me and think this through before I sign it?”  The answer to that was, and always should be, “yes.”

It was as simple as that.  Well, sort of.  Now I need to sit and think about the changes.  I will talk them over with my husband, and I will draft some more paragraphs to add to the document.  These amendments are intended to provide clarity and more detail to what seemed to me to be rather nebulous plans, and I will ask for detailed reporting in order to evaluate the success of the changes that the school wants to make.

I’m not certain the final document will be perfect, but I feel that I’ve done the best job possible of serving my son’s needs and leaving room for course corrections if we find them necessary.

And now, I want to hear from you.  How have your IEP experiences been?  What suggestions do you have for people who may be just starting out on this road?  Please share your comments below—this community is here so that we can learn from each other.

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