In order to help our members find useful resources within the community, we will occasionally use this blog space to highlight organizations and individuals that are working to make a difference in the lives of individuals with special needs.
In this first installment of our Kokua Spotlight series, we are featuring a Special Needs/Adaptive Gymnastics program at the West Chester Area YMCA Youth Program Center in West Chester, PA. We discussed the program with its founder, Donna Watters, who is the Gymnastics and Dance Director for the YMCA.
Donna has been teaching gymnastics through the YMCA since 1982. She directs programs for gymnasts aged 18 months to 18 years, including instructional classes, competitive teams, and specialty programs such as recreational gymnastics, tumbling/acrobatics, and special needs/adaptive gymnastics.
The special needs gymnastics program was a longtime dream of Donna’s, whose cousin had been a Special Olympian. In addition, one of the gymnastics program coaches, Heather Jones, has a sister who was a gymnast in the Special Olympics. Donna and Heather wanted to start a program specifically for special needs gymnasts at the West Chester YMCA, and the opportunity came when the YMCA challenged directors to come up with ideas for new programs. The top idea would be awarded a seed grant. Their idea won, and they were awarded the grant. The first session of the Special Needs/Adaptive Gymnastics program was in the Fall of 2013.
The class benefits from a very small student-teacher ratio. Typically, there is one teacher for two students, but sometimes the ratio has been one-to-one or one-to-three, depending on the level of student need.
The instructors are chosen because of their own educational, personal, and career backgrounds. Donna’s description of her coaching staff reflects her pride in their diverse backgrounds, “Miss Jen is a Phys. Ed/ Special Ed graduate of Penn State and had past experience working with her mother teaching special needs exercise classes. Miss Haley will be graduating in December with her degree in Special Education. Miss Heather is graduating this weekend with her degree in occupational therapy and had been a long time Special Olympics coach at the Hatboro Y,” she explains. She also noted that Heather also has a sister who is a special needs gymnast.
According to Donna, “much of what the staff has learned is that it’s a week-to-week, student-to-student learning experience,” and that although the coaching staff has plenty of textbook knowledge, “this experience has taught them as much or more than learning in the classroom.”
Prior to beginning this program, Donna and the other coaches worked with many special needs children in the Y’s other gymnastics programs. Those experiences are part of the inspiration behind the special needs program. When discussing the special needs students in those classes, she says, “they have done well and the coaches have really enjoyed it, but we wanted to be able to spend more time with them to make sure they were getting everything they needed.” Donna acknowledges the value of inclusion programs while still advocating for the importance of adaptive programing as a place where those kids “could really shine” when given “the opportunity to reach their full potential” with specialized instruction.
In particular, she feels that the Y’s special needs/adaptive program has fostered friendships and a sense of community among the participants, saying, “The greatest accomplishment has been watching them become a team. The low ratio allows them do their own thing or go their own way. But the goal was to get them to become a small group and to travel to each piece of equipment together. This began happening midway through this year and it was such a sense of accomplishment for the coaches.” She has also observed another important component of teamwork: “I’ve also seen the children start to take ownership of their program and I have seen some of them providing a little leadership to the others…they listen to each other and trust each other.”
Donna says that the program has been received very well and that the Y branch has been supportive of the small program. “I warned them that because of the very small nature of the class, the rewards and benefits may not seem huge, but they have learned that everything that happens in that class is huge and that we enjoy celebrating every success.”
Donna concludes, “We love having this program and would really like to see it grow…We also want to thank the dedicated students and their parents who began this with us and have really helped us to learn and grow!”
The Special Needs/Adaptive Gymnastics Program featured here is offered at the YMCA of Greater Brandywine’s Oscar Lasko Youth Program Center in West Chester, PA. For more information, or to register for the program, contact Donna using the information below:
Gymnastics and Dance Director
YMCA OF GREATER BRANDYWINE
Oscar Lasko Youth Program Center
1 E Chestnut Street
West Chester, PA 19380
610-696-YMCA (9622) ext 2802
The following is a guest blog post by Kokua Network contributor Heather Johnson.
In an ideal world, a child’s case manager and therapists would remain the same from the very first diagnosis until retirement. It’s frustrating to have to get a person reassessed and explain that person’s story, needs and progress to a new person at every new phase of life. Unfortunately, funding streams change as your child ages. Knowing where to begin is sometimes the hardest challenge. This blog is in no way a comprehensive guide to all of the service options available to you, but rather serves as a jumping off point; a place to begin.
Birth-3 Early Intervention
When you start to suspect your child might need some additional supports, the first thing to do is get him or her assessed. Your family doctor is a good place to start, however, you can also go through your county Mental Health/ Mental Retardation (MHMR) department. This assessment will determine what services your child needs, such as occupational therapy, physical therapy, speech/language support, hearing and vision support, and behavior services. Identifying your child’s need early and beginning services at this age is crucial; many symptoms and characteristics of many disability diagnoses can be alleviated or reduced if they are treated early.
Age 3-5 Preschool
After your child has aged out of early intervention but before he or she has started kindergarten, services are accessed through your county’s intermediate unit if the child has a diagnosis of Intellectual Disability. The intermediate unit can help your child continue the services they had in early intervention, as well as re-assess to see what needs have been met and what still needs support.
Not all children who are eligible for services in Early Intervention qualify for preschool supports, so getting a new assessment at this time is critical. If your child does not qualify for services through the intermediate unit but you still feel supports are necessary, don’t give up! Most qualification decisions can be disputed, or services may be funded through private insurance. If you hit a road block here, reach out to your local advocacy group for help.
Age 5-21 School
Once your child is in school, the district is required by law to meet his or her instructional needs, whether it is one of the services listed above, or others such as adaptive equipment, specialized instruction, or placement in a private school. Unfortunately, it can sometimes be a fight to get these services in place. Educational advocates are available to help you navigate through any problems, if necessary.
If your child has an ID diagnosis, another resource for you now is supports coordination services,. To register with the county for these services, call the intake specialist. You’ll have to meet with the specialist, provide documentation, and choose your supports coordinator, who will help you to create your child’s Individualized Support Plan. Although the school district is responsible for providing services, your supports coordinator can help you find things like activities, summer camps, support groups, advocates, and in some cases help with funding assistance.
If you don’t choose to register your child with the county during elementary and middle school, please do so by the time her or she turns 18. The better the county is aware of your situation post-graduation, the more likely your child is to receive funding, and your supports coordinator can help you through the transition from school to adult life.
21 and on Adulthood
Once your child turns 21 her or she is no longer entitled to any services. The state and federal government have funding programs, called Waivers, to help pay for services your child will need to lead a normal life, such as day programs, residential placements, in-home supports, transportation and respite. These funds are allotted based on need, and the availability of funding will change based on government officials, number of people applying, etc. Financial qualifications need to be met to be eligible for these funds, including receiving medical assistance and having assets below $2,000. Your supports coordinator will help you apply for funding and set up services.
It’s a long and frustrating road to travel, but please know you are not alone. We are a strong, well-connected and knowledgeable community; help is always available to those who need it. If you need individual assistance or have further questions, you can always contact me, Heather Johnson, from The Arc Alliance, at 610-324-8307 or email@example.com.
Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.
Hey readers, remember this blog? We know it has been a long time since you’ve heard from us. Well, there’s a reason for that. Although we haven’t been posting much blog content lately, we’ve still been very busy.
Over the past few months we have been working on how to make this website and blog more useful to you, our readers and members. We’ve teamed up with some other folks with the same goal we have: to help put all of the information Special Needs families need in one place. And we are thrilled to let you know that we have BIG THINGS in store for this site.
First, start expecting more blog posts. But that’s not the big news—the big news is that we have a whole team of guest bloggers and you are going to love them! Behavioral experts, teachers, coaches, case workers, and more—all have agreed to share their insight and wisdom with you right here.
Expect to see regular blog posts on a variety of topics, all of it useful information for families like yours.
In addition, we are going to be posting more updates on our Facebook page—so if you haven’t “liked” us already, do it now! We promise not to fill your news feed with junk—just important updates you need to know.
And, for those who are registered for our E-newsletter, we’ll be sharing more info through email, too. Don’t worry about your inbox getting flooded, though—you will only hear from us once or twice monthly. We know you are busy and you don’t need to be overwhelmed with junk mail, so we aren’t giving your address out or abusing it in any way. So go ahead and register for our E-newsletters if you haven’t already—you’ll be glad you did.
And, please—if you know of a friend or family who could use this information, tell them about us! Remember, we are here as a free resource for you—so spread the word!
Enjoy the start of spring—and we hope to see you back here again, very soon!
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!
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.
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
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.
One of the ongoing struggles for me, as a parent of a child with special needs, is the unique combination of stresses and pressures that our other kids face.[distance1]
Maybe it’s because I’m certain I’m scarring my children at every possible turn (and not just by insisting that they witness my awesome dance moves), but I’m always curious about how other families handle the sibling relationship, and how adult siblings view their family relationships. I’ve asked for some input from friends and readers about their family and sibling experiences.[distance1]
When I asked my friend Scott about what it was like growing up with his brother Joseph, he explained that Joseph “was my only sibling so there is nothing to compare.” Joseph was born premature with cerebral palsy (and blind from birth) when Scott was 13. While the exact diagnosis was not immediately clear, Scott’s parents told him everything that was going on. As he said, “there was no sugar coating.”[distance1]
Scott shares that he was aware that his parents “constantly struggled with the day to day care” of his brother. He acknowledges, however, that though his parents dealt with huge pressures, “the thing my family did well was using humor as a coping mechanism.” Regardless, he understood from an early age that his brother’s needs occupied most of his parents’ focus, “unless I did something spectacularly good or, in most cases, spectacularly bad.”[distance1]
Lisa is in the very early stages of coping with a new diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, an Autism Spectrum Diagnosis) for her daughter, Ava. As a three year old who also battles epilepsy, Ava’s symptoms were initially masked by her anti-seizure medication. And while Lisa resisted comparing Ava’s development and early progress to that of their son Kyle, “the signals got to be too many to ignore.”[distance1]
Because Kyle was only five when the family began the testing process for Ava, his parents have refrained from sharing many details with him other than explaining that “her brain doesn’t work the same way that his does.”[distance1]
In many regards, Kyle and Ava have a very typical sibling relationship; the siblings share a bedroom and enjoy playing together as well as getting into trouble together. “He treats her like an obstacle, like a hindrance, like a best friend, like a confidant, like a partner in crime.”[distance1]
Lisa admits that she does expect a lot of flexibility of Kyle when dealing with his younger sister. “I know it’s not fair,” she says, “but I try to take the path of least resistance while I am struggling without support.”[distance1]
Looking toward the future, Lisa admits that the thought of managing her children’s ongoing relationship can be daunting and believes that some support groups or counseling could be helpful. However, she feels “overwhelmed” at the idea of fitting such activities into the family’s schedule.[distance1]
Beth is an adult who grew up as the second of three children in a family whose youngest child, and only son, had a variety of developmental disabilities caused by complications during childbirth. David struggled with various health problems, and Beth recalls a childhood of therapists and surgeries for her little brother, as well as ongoing educational challenges.[distance1]
Beth recalls being very fond of her brother when they were children, and taking on more of a protective role as they grew older. She credits this experience with her interest in advocacy. As an adult, she says, “I have assumed the role of second mom.”[distance1]
Looking back on their childhood together, Beth recalls the most difficult part being seeing David struggle. However, she credits David with having been a “uniting force” for her family. Additionally, she feels that her parents served as role models for David of how to have morals and a work ethic, as well as providing an example for the rest of the family through their dedication to David. While she knows her brother would love to live independently, she hopes that one day he will come to live with her and her husband.[distance1]
Listening to these stories gives me hope. I remember being in Lisa’s position and I marvel at how far our family has come. My children have come so far in their mutual understanding and in developing their relationships with each other. While I’ll always worry for their future, I’m inspired by the fondness with which Scott and Beth speak of their experiences, and I’m hopeful that my own children will grow to be similarly respectful and loving toward their brother as they all become adults.[distance1]
Happy New Year from Kokua Network!
On a personal note, my family had a wonderful, joyful holiday season. It was a time full of love and family and fun, in the sloppy, silly, perfectly imperfect way that families like ours know so well.
But, ohmygoodness, are we ever ready to get back to normal! After endless crafts and board games and snow—and braving a once-in-a-lifetime Polar Vortex weather event—it was certainly time to get those munchkins on the school bus this week. And it seems that by the time the bus pulled away, my calendar filled right up for the month.
School meetings, doctor’s appointments, evaluations, scout meetings, therapists…we are starting 2014 with a bang! I feel like my head is spinning a bit (wasn’t it just yesterday that I was frantically searching for last-minute stocking stuffers?). Regardless of the chaos, it is exciting to start a new year and anticipate all of the changes it will bring.
Similarly, we at Kokua Network have jumped into the new year with both feet. We have big plans in store for you, and we can’t wait to get started.
So check the site frequently, because we are adding content, resources, and tools to better serve you. While you’re at it, consider adding your name to our email list by enrolling as a Kokua Network member. Membership is free, and we promise not to abuse your trust—we will only email you when we have big things to share.
And keep in touch! Let us know what information you want and what you’re looking for on our site. We are working to serve you, and would love your input as we make continual improvements on our site.
So, again—Happy New Year! Let’s make it a great 2014!