Amelia's Story

By Jim and Katarzyna Bibles

Katarzyna and I founded the Cajun Fest in October 2006 to support the Down Syndrome Connection of the Bay Area (DSCBA). As expecting parents of a child with Down syndrome the DSCBA was and still is the only organization in the bay area we could go to find detailed information on the challenges we may face as parents of a child with Down syndrome and to talk to other families. The DSCBA gave us hope, as we were able to see the joy and love other families possessed. Once Amelia (our youngest daughter) was born we became active members. Amelia and Katarzyna (and sometimes our other daughter Nadia) would go to mommy and me music classes, we attended parent support groups, and our whole family experienced first hand the love and support of the Down syndrome community. Most importantly, the DSCBA gave us the tools we needed to turn what could have been a very difficult time into one of the most joyful times of our lives.

Shortly before the inaugural event, our daughter Amelia was diagnosed with and hospitalized for Primary Pulmonary Hyper Tension. This is a rare complication that resulted from heart surgery in the previous year to repair an Atrial Septal Defect (a common condition among children with Down’s). Unfortunately, while she thrived after her heart surgery, she was not strong enough to withstand the setback, and passed away shortly after the event. That is why the event is now called Cajun Fest - A memoriam for Amelia Bibles.

The support that you give to the Down Syndrome Connection of the Bay Area will ensure that children like Amelia and their parents will continue to have a warm and loving non-profit organization that provides the tools they need to navigate the emotional and physical issues associated with Down syndrome, live happy and fulfilling lives, and be productive members of society.

Thank you for your consideration

Jim and Katarzyna Bibles

They Inspire Me

By Bernadette Fatehi

Raise your hand if you've asked yourself why you were made the parent of a child with Down syndrome (or any child with special needs, for that matter.) I have asked myself that question a few times since Lily was born. There's got to be a reason.

It has occurred to me that up until about a year ago I still felt like I hadn't become what I was supposed to be "when I grew up." I have had many jobs in my life; I've tried lots of different things to feel fulfilled. Still, it is only recently that I feel like I have a real purpose.

Lily is almost four years old now and it's become clear to me that she is destined to be a star. I know, I know. I'm her mom; of course I would say that. I am serious though; she is one of the souls that moves through this world and makes a difference in people's lives every day. I see it all the time. When we go to the grocery store and I am trying to find bananas that are just right for eating tomorrow. Inevitably, someone is quietly watching us while Lily is saying, "Mom, let me do it, let me do it." She wants to choose the ones that will go into the bag. I try to remember that every exercise and experience is an education for her. At the same time, it is an education for those who watch her in the store, at the pool, at the library, at the service station while we get the car's oil changed. Those who know a child with Down syndrome know the delights they behold.

Those who don't, I think, are amazed at the intelligence and charm our children have.

Quite awhile back I found a quote in some article I was reading. The quote is from an unknown source and reads, "Inclusion of children with special needs in all environments in which typical children participate is critical to their development and achievement of their potential." I clipped it out and taped it onto our refrigerator along with all the other magnetic collectibles, artwork, and photos that live there. I wish I knew who wrote it, because I would like to thank that person for giving me such a practical philosophy to live by. How could I make that "inclusion" happen for Lily? She is in a segregated special education class and unfortunately with the way the system currently works, that is where she will remain for the time being. That's when I got the inspiration to start Buddy Play. I felt like someone lit a fire under me, that I had to hurry up and give Lily something more to help her reach higher. People put playgroups together all the time; why not start one myself that would provide more opportunity for role-modeling? After all the time I had spent volunteering in Lily's classes, I realized I had learned a thing or two about incorporating various therapies into fun, kidfriendly activities. Yes, I was definitely inspired.

I think everyone would be lucky to have someone in their lives that inspired them the way Lily inspires me. She is the reason I started Buddy Play, a playgroup for children with special needs and their typically developing peers. Buddy Play offers themed playgroups that provide activities to promote exercise in developmental skills. Since October 2007, I have been coordinating the playgroups and inviting all children with or without special needs to participate. Our first Buddy Play was a play dough party in the park. There was a mix of kids with special needs and typically developing kids that spent the afternoon together playing harmoniously with the colorful dough. That day was the first of many fun and rewarding experiences that have continued whenever our group meets. We have read stories to each other, decorated Christmas cookies, created snowflake art, been tattooed together, crafted old-fashioned Valentines, made pizza, and arranged beautiful Spring flowers, just to mention a few activities.

Along the way, the kids have learned some American Sign Language they may not have used before, sung some songs with a great music therapist, Nicole Patton, and made new friendships to last for years to come. I love to see the kids help and support each other as they interact. Sometimes the typical children, (what I call the TD kids) will ask a question about one of the kids with special needs. It's always a great opportunity to let them know that some of the kids have different abilities and may need some extra help, but are basically there to have fun just like them. Some of the parents have told me that they appreciate having a social group where their kids are safe, accepted, and their wide range of abilities is considered and accommodated.

The kids with special needs have received help and rolemodeling from our TD kids, while our TD kids have learned empathy and how to be a good "buddy" to their peers with special needs. As for the parents, I think they have enjoyed watching all that happens at Buddy Play just as much as I have. I always leave with a very gratified feeling, and a brain churning with new ideas for future groups.

Now, let me say, that as with most movements and ideas, Buddy Play has only grown and been successful with help coming from all directions. Martha Hogan offered the classroom at Down Syndrome Connection for one of our meeting places, Kathryn Valdez from the Hope Center offered another. Several of the mothers who bring their children on a regular basis have been an enormous help. They have taken turns bringing snacks for the kids, vacuumed up after we've made a mess, or helped to do an activity. Many people answered the call when my own mother did some secret fund-raising without my knowledge. Apparently there are a lot of guardian angels who have high hopes for Buddy Play and want to help make it a success! It has taken on a life of its own.

So... now when I ask why I was made the mother of a child with Down syndrome, I have an answer for myself. It's to do what I can for Lily and all the other kids that come to Buddy Play. I love them. I want to be around them. They inspire me more than anything ever has before!

If you would like more information about Buddy Play and a schedule of playgroups, please visit our website at www.buddyplay.org

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Ten Ways to Take Charge of Your Child's IEP Meeting or Family Support Plan

By Janet Holmes

1. Be first - make sure you talk first. Don't be afraid to lead the IEP meeting. Bring notes, take notes and make all introductions yourself. It's your school, your teachers, your child. Put your priorities on the table for discussion first.
2. Build a strong base of information. You know your child. Get to know his school behavior, attend his class for a substantial amount of time. Be sure to use the appropriate visiting procedures but don't be afraid to make a surprise visit. During the IEP meeting ask questions if you do not understand. You are the expert for your child, but you are not expected to understand all school terminology.
3. Know your rights. Public Law has given all parents rights and schools legal responsibilities. How can you advocate for important issues if you're not sure you are right? Local family and state organizations hold workshops for parents. Find them!
4. Bring notes-make your own goals for your child. Start with making long-term goals for your child and family. Take your own notes to the meeting and write long- and short-term objectives in your words. It is appropriate to include your suggestions, you should expect nothing less.
5. Know how to say no - be gracefully firm. Take a firm stand on important issues and only important ones. Be willing to compromise and don't expect to get it all. Choose your fight carefully, and then use the phrase "that is unacceptable." Have your argument ready, but always speak carefully. Get areas of disagreement written on the plan or, better yet, go home and write a letter to attach to the IEP. Don't be rushed into accepting anything; IEP's can be continued at a later date. The IEP will go forward without your signature, but you need to document your disagreement in case you wish to take the issue to due process.
6. Make friends - at school. Always support your school and teacher. Be the room mother, volunteer to help whenever you can. If you are respected as a supporter of the school, you are more likely to be respected at the IEP. Let people know you appreciate them, make positive comments. A few kind words can only open doors for you and your child.
7. Keep your cool - angry parents are sometimes written off. Although anger is sometimes needed to get your point across, remember, parents who lose their temper are quickly labeled as uncooperative and unreasonable which can make it easier for personnel to gather others against your ideas and concerns.
8. Keep records - put it on paper. Maintain records for your child. Put all your correspondence in the file. Make every IEP request in writing and ask for a written response. Check every so often to see if your correspondences are included.
9. End your IEP - with a good check up. At the end of the IEP, make sure all of your points have been included. Check up on the promises, goals, and objectives that were agreed upon at the meeting. It is your job to monitor the IEP plan.

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Observations on Conversations with Young Adults with DS

The National Organization of Parents & Professionals Volume 25, Number 6

By James D. MacDonald, Ph.D., Columbus, Ohio

MacDonald, a clinician and researcher with people with language disorders, was a professor of Speech-Language-Pathology and director of the parent-child communication clinic at the Nisonger Center at Ohio State University from 1971 to 1995. Since 1995, he has directed the Communicating Partners Center. MacDonald, a frequent speaker at NDSC Conventions, was a presenter at the 2002 NDSC Convention in Denver, including at the Youth and Adult Conference.

While I Denver, I spoke to two groups of people with Down syndrome over 16 years of age; most were in their twenties and thirties.

Actually, what we did was have an audience-type talk show. I talked briefly about some keys to having a conversation, and then I asked them to tell about their best conversational partner. I bet over 70 percent of the hands went up furiously. I tried to have little conversations with many of the folks and in the three hours came back with a few observations.

• Most said that conversations were very important to them.
• Some seemed to think that conversation simply meant talking and saying as much as is on their minds.
• Some knew that conversations mean to take turns and let others talk as well.
• Most of their favorite conversational partners were either friends they made at the convention or their "boyfriend" or "girlfriend."
• Many said they had been hurt in conversations by people who make fun of them.

I have several very tentative conclusions that may help parents think about the future:

• Young adults with DS do want to talk to people.
• They often talk in monologues rather than in back and forth conversations.
• They often ignore what their partner says and have a hard time responding to what others say.
• They often play a very passive role in conversations and need quite a bit of silent waiting to get them started.
• Some are afraid that others will make fun of them.
• They sometimes have difficulty staying on one topic for more than a few exchanges.
• They sometimes need help to find what to say.

They sometimes need to be reminded to respond to what the other person talks about.

I had a wonderful time. And this experience makes me what to encourage all of you parents of young children to remember two absolutely important skills that make a huge difference as children age:

Taking turns-unless a child takes turns, he will be unlikely to build friendships and learn from others. I spoke with many young adults who knew that talking was much more than performing; they said one thing then waited for me to talk and they stayed in conversations on one topic for several turns. Some did not seem to take turns much and they seemed more isolated than the ones that did.

Responding to what the conversation partner says-it made such a difference to me when the person responded to what I said rather than just continue on with what they were saying. It is not enough for someone to learn to talk; they need to learn to talk about what their partners talk about. Otherwise, most people will lose interest and not build a relationship with them.

And, my point is that it is not too soon to teach your child these two critical skills; taking turns and responding to what you do and say. It saddens me to see so many wonderful people who have a great deal of language to seem so quiet and alone when they have not learned to take turns and talk about what others are interested in.

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