Talking About Down Syndrome with Typical Siblings

by Kurt Reising

Explaining Down syndrome to young siblings is a difficult but necessary conversation to have. My daughter Audrey was born with Down syndrome when my son Clayton was two. He had no idea or reason to suspect that there was anything different about his little sister. This began to change as Clayton became older and more perceptive. He started to wonder things out loud, innocently asking things like when Audrey would talk.

My wife, a registered nurse, eventually had a conversation with Clayton and explained to him, in terms he could grasp, that Audrey has Down syndrome. She was sure to let him know that she was not in any pain, but just wasn’t going to be able to do things as soon as other children normally learn to do them. This conversation was only the beginning, but I believe it started Clayton on a path to being the best sibling he can be for Audrey.

Brian Skotko, Sue Levine, and Richard Goldstein performed a study that showed that nearly ninety percent of older siblings believe they grew up to be better people because their younger sibling has Down syndrome. Communicating with your child lets them understand their sibling, and also understand that they can ask about things. This can lead to them becoming a helper in raising their sibling. Clayton does not know it yet, but just being a good brother is an opportunity for him to learn about inclusion and empathy, and ultimately be a better person.

Being an older sibling already carries a burden of responsibility, and this can be magnified if your younger sibling has Down syndrome. This is something my son gets frustrated with, and is still learning to deal with. Sometimes Audrey is naughty or gets into his things. Clayton sometimes feels frustrated that she does not always understand that he is upset when she does things that are against the rules. Though I know that this scenario is not so different from scenarios had by any set of siblings, there is a difference when one of the children has Down syndrome. Clayton has to be reminded that Audrey loves him, and though it is unfair; he needs to be reminded that Audrey does follow his example, so he should try to set a good one.

We try not to put Clayton in a position where he feels obligated to act differently, but this is somewhat unavoidable as Audrey does feel that she can do anything she has seen her big brother do. I like to frame it positively, making sure to point out how Audrey thinks Clayton is pretty cool. There can also be feelings of jealousy, as Audrey gets a lot of attention from supportive family, friends and even the occasional stranger who wants to meet her. She gets a special day each year where we all go join team Audrey for the Down Syndrome Awareness Walk, and she gets praise for doing things that he has no problem doing. According to the same study cited above, siblings younger than eighth grade are more likely to feel a difference in attention given to their sibling with Down syndrome. Conversations reassuring his importance and specialness are important.

It goes without saying that you will have to have a conversation with typical siblings at some point. This varies with age; in our case we let it go for a while until Clayton was old enough to understand. Even after the initial conversation, I think it is a good idea to try anticipating further questions, so you are prepared to answer those questions in a positive, truthful and accurate way.

Sibling relationships are often contentious, whether or not Down syndrome is involved. Many of the arguments, disagreements, and other strife are common amongst all siblings. This is something that Clayton has to be reminded of as well. Audrey is not taking his toys because she is different; she is actually doing it because she is the same.

Having communication with siblings about these issues allows them to be better equipped to handle their feelings of frustration and jealousy. It helps them be involved, and ultimately creates an informed advocate and protector who will learn empathy, inclusion, and responsibility. Having a brother or sister with Down syndrome can be difficult for a child, but communication and inclusion of siblings will be beneficial to all. 

"We Absolutely Couldn't Ask for More!"

Does your family need one-on-one support for your loved one with Down syndrome? Do you need help with IEPs, inclusion, or speech? Are you struggling with behavior problems and need a custom solution? Do you need to find respite care? Does your loved one need help securing transportation, housing, caregivers, or employment? Would you like to develop a 5- or 10-year plan for your loved one to help them reach their goals?

DSAW-Family Services can help with ALL of this, and more! DSAW-FS provides one-on-one services to individuals with Down syndrome and other special needs and their families, helping individuals take their rightful place in the community and achieve their full level of independence. Whatever obstacle you are facing, DSAW-Family Services can help!

DSAW-FS has been working with Kathryn for a couple of years. She has received daily life-skills training, job coaching, and one-on-one support to help her achieve her dreams. Kathryn's mom, Julie, says that with DSAW-FS, Kathryn "has accomplished so much and her success has been wonderful!" DSAW-Family Services has matched Kathryn with a support worker that has been life-changing for Kathryn and her family. "It is so important to us to have a long-term and REAL relationship with our provider...DSAW-FS has provided Kathryn with exactly what she has needed, when she needed it."

With the help of DSAW-Family Services, Kathryn is living a fulfilling and active life in the community. She has two jobs, she volunteers at DSAW, is involved in Project Search, and participates in Special Olympics. Julie says that she "absolutely couldn't ask for more!"

When you support DSAW, you support the services that have helped people like Kathryn thrive. Would you consider giving others an amazing life this holiday season? By donating to DSAW, you can.

Warmly, 
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin 

PS - Only 5 days left for your donation to qualify for a dollar for dollar match thanks to a generous donor. Make your donation today!

How Schools Can Be Inclusive To Individuals With Down Syndrome And Other Special Needs

When it comes to educating individuals with special needs, DSAW advocates inclusion as the first option. Special education services come in many different forms, however, schools are required to consider the general education class before any other setting. Here are some tips for schools, teachers, and parents to help with the inclusion process.

School Environment

• It's important to keep a positive attitude throughout the school. Place values on diversity, be flexible, and practice positive problem-solving with students.

•Teachers should modify assignments when they are too difficult for children with special needs. They should also aim to model respect, as well as encourage friendships in the classroom. The different learning abilities and styles within the class should also be considered. Teachers should teach in a way that allows all children to understand and participate. 

Making Friends

•Encourage children to participate in activities where he/she can meet children his/her same age with different abilities. Make sure to support the development of friendships with classmates.

•Provide many opportunities for children with Down syndrome to socialize in a peer group with similar levels of intellectual disability. It is important for children with disabilities to have friends who are similar to them both in and outside of school.

•Similarly, it is good for friendships with non-disabled peers to carry on outside of school. This will help improve understanding and support.

Parents

•Keep in mind the power of role models. You want your child to feel that they are part of their community. It will help if they have strong influences who can set good examples and be someone they can look up to.

•Set up meetings with teachers, therapists and others to discuss the goals, expectations, and future placement preferences you want to plan with your child.

Need Help?

•Schedule a Peer Sensitivity Training at your school! DSAW can help teach your child's classmates about what Down syndrome is, what it isn't, and how to be a good friend to someone with Down syndrome.

•Watch our IEP Webinar to learn more about advocating for more inclusion for your child.

•Do the teachers at your school want to learn more about teaching individuals with Down syndrome? They can schedule a teacher in-service to learn the latest techniques.  

•Need one-on-one support managing the relationship with your teacher or school district? Contact DSAW-Family Services to set up a Roadmap Session.

Resources:

http://www.pbs.org/parents/education/learning-disabilities/inclusive-education/making-inclusion-a-reality/
https://www.down-syndrome.org/practice/370/
http://www.ndss.org/Resources/Education/Implementing-Inclusion/

A Guide to IEPs

Your child with Down syndrome will experience 18 to 21 years of school. Ideally, school should help your child not only meet key developmental and social goals, but should also prepare them for life after school is over. In order to make sure your child's goals are met, it's important to properly utilize their IEP.

The Individualized Education Program (IEP) is a legal document that creates an educational plan. It spells out your child's learning needs, the services the school will provide and how progress will be measured. At first, it can be intimidating and confusing, but it doesn't have to be! 

Take a look at this IEP guide to help you create goals, work with your team, and more. This guide was created from a Webinar about IEPs that DSAW hosted in the fall of 2016. If you'd rather watch the webinar recording, click here.

Purpose of  Special Education:

1. Prepare your child for a job

2. Prepare your child for college or technical school

3. Prepare your child to live as independently as possible

Remember your specific purpose for school. If you're asking big things of your school, make sure your requests match up with the needs of your child. 

What to do prior to your IEP meeting:

1. Ask for a draft of the IEP.

2. Ask if the school intends to change placement.

3. Ask if the school intends to reduce services.

If you're not comfortable with the answers you receive, you can re-convene the meeting.

4. Create a collaborative infrastructure and state your top 5 most important goals.

The Pages Of Your IEP: 

I-9

This page is often overlooked, but it is the most important page. Have your school send you the IEP ahead of time so you can read it through beforehand. Don't skip over the I-9 and don't run out of time for it during the meeting. Reading through your IEP beforehand will help you manage your meeting time. You'll be prepared and will be able to ask the most important questions.

The I-9 describes the school's resources to help your child reach their goals. The goals justify the services. Everything that is included in the IEP needs to be there for the sole purpose of leading towards your goals. 

I-3

This page defines the purpose of the meeting and describes who can attend. You can invite anyone you want to attend meeting, but you should let the school know in advance. The local education agency (LEA) is in charge and has the ultimate authority. You will ask the LEA your bigger questions. When a school transition is expected (middle to high school) be sure to ask staff from both schools to attend.  

I-4

This page is the PLOP (present level of performance). It defines your child's present level of performance. Ask for this information prior to the meeting and read it prior to meeting so that you can bring your questions with you. 

I-5 

This is the special factors page. It asks the question, "Does the student's behavior impede his learning or the learning of others?" If yes, the IEP must include behavior interventions/ strategies. Many will say the only way to get the behavior interventions and strategies correct is to do a formal functional behavior assessment and formal behavior intervention plan (FBA and BIP) to find out why the child's behavior is preventing them from learning.

I-6 

This page captures all the goals for your child. Achieving a goal is the justification for services listed in the I-9. A lack of budget alone is not a valid justification for not providing services. The only reason a school can have for not providing services is if they aren't needed to reach the child's goals. Goals are to be individualized. It is OK for parents to introduce parent goals before and during the IEP.

I-7 

This page determines if the child should take district wide tests or alternative (significant cognitive disability; instructed using common core essential elements; student requires extensive and individualized instruction).

I-8 

This page includes a transition plan for children who turn 14. In Wisconsin, the transition plan must be in the beginning of the IEP when the child turns age 14 during the IEP year. If you're looking for help developing a transition plan for your child, we recommend contacting DSAW-Family Services, our transitions experts.

Legal documents:

LRE:  Stands for "least restrictive environmental". It means that, to the greatest extent possible, a student with a disability should have the opportunity to be educated along with non-disabled peers. 

FAPE: Stands for "Free and appropriate public education". Your child should be able to do the same things other kids with typical abilities can do (from yearbook to choir to golf team). If there are not try outs, the school should make available the supports to allow your child to participate with their typical peers.

FAQs:

What should I do for my child in the birth to 3 age group?

At least 90 days prior to IEP meeting you need to provide your school with a packet of information. An occupational therapist will most likely be required. The strategy should be to have your birth to 3 providers set up goals for your child. 

What should my age 4 IEP goals be? 

1. Social goal (inclusion)

2. Speech articulation (speech)

3. Speech language (speech)

4. Staying on task (behavior)

5. Gross motor (PT)

6. Fine motor (OT)

7. Academic (colors, shapes, etc.)

What should my child know going into 1st grade?

Behavior is one of the biggest challenges our friends with Down syndrome have. At age 6 your child should be able to:

1. Sit at a table for 3-5 minute

2. Wait at least one minute

3. Comply with single step directions

4. Transition from high preference activity to low preference activity

5. Tolerate boredom

6. Use a quiet voice

7. Keep their hands to themselves

8. Perform a table task

9. Show flexibility

10. Show sharing skills

11. Stay close (Lots of kids with Down syndrome are "runners" and it is important that they know to stay close when they need to.)

How does my IEP transfer across state lines/ school districts?

Every IEP has a common format and 90% look alike. Every school has a different personality, which accounts for 10% that is different. Some things are delegated to schools. Services are provided to students that attend private schools. Some things are based on interpretation of law suits. FBA is an evaluation and requires parent authorization. There are big differences in programs for 3 and 4 year olds. If you had a good IEP at your old school, you should be able to get the same goals at your new school. It would be hard for the new school to argue against good plans. 

How are homebound services different from early childhood (age 4)?

Homebound: You stay at home and a teacher will come visit, check your work, give assignments, and answer questions. This is a type of independent study. In most school districts you are still a part of your school because this is a temporary arrangement. You will return to your school when you are able to. Usually this is offered to students who are ill or having problems at school that need some time away from school. A homebound student might get 2 hours per week of a special education teacher's time. The expectation is that parents really do the teaching.

Early Childhood: A student in a robust early childhood program might get 10 hours per week of support from a special education teacher, therapists, and paraprofessionals. You will get more outside, professional help if your child is at school.

How do I write a good goal?

Parents need to understand the goals. Incorporate the baseline/present level into the goal preceded by the word increase and you won't fail to write a good goal. For example: John will increase his speech intelligibility from his present level of 60% understandable to unfamiliar listeners with context to 80% understandable to unfamiliar listeners with no context.

My child is 12 years old. How should I prepare for a high school IEP?

1. A child will age out of most child care programs at this time (start searching for child care when your child turns 11).

2. Decide how important inclusion is to your child (there is less of it in middle school and high school so you might have to start advocating more for that).

3. Spend a day shadowing a self-advocate.

4. Spend a day in high school.

5. Change your mindset to transition.

6. Attend a transition conference.

7. Talk to some parents with kids in high school.

How does the IEP change over time? 

What is the perfect transition?

When the last day of school is no different from the first day after school.

What should our goals be for age groups?

6-16: social, speech, behavior, personal safety, reading, writing

17-18: social, speech, behavior, recreation, employment, personal safety, college prep

19-25: social, recreation, employment, personal safety, independent living

What is the best way to measure progress on a goal?

Tallied observations sent home to the parents daily. Be conscious of the time and cost of collecting data; perhaps you really only need data from the school one day per month. Other measures include work samples, anecdotal observations, and informational observations. 

What is the difference between Facilitated IEP and Mediation?

Facilitated: DPI pays for someone to facilitate your IEP. In this case, many parents feel their voice was heard and the IEP was fair.

Mediation: A process to reach agreement with the help of a mediator. This gives you the ability to ask open ended questions and get answers. 

We hope this guide has helped you feel prepared for your upcoming IEP! If you're looking for this information in a more interactive format, consider watching the recording of our IEP Webinar. Want to schedule a consultation for individualized help with you IEP planning? Contact DSAW-Family Services!

What's the Deal with Awareness Walks?

DSAW hosts seven Down Syndrome Awareness Walks each year. These annual walks draw more than 7,000 walkers, volunteers, donors, sponsors, and partners across the State under one collective mission – to raise awareness and promote inclusion, diversity and acceptance of people with Down syndrome in our communities and in our lives. 

What is a Down Syndrome Awareness Walk?

Down Syndrome Awareness Walks raise awareness, acceptance, and access for individuals with Down syndrome across Wisconsin. For the past 21 years, the Annual Awareness Walks have been the key fundraising mechanism that allow us to enter and serve communities across the state to help individuals and families with special needs prove they are stronger than the obstacles they face. 

Why do we walk?

We walk to tell our stories. That our children are remarkably gifted, talented and beautiful creations. We walk because our sons and daughters battle every day for the same liberties that are so often taken for granted by our society. We walk to create new programs and services in under-served communities. We walk to tell our stories to the world. DSAW is 100% funded by private individuals and concerned corporate citizens and foundations who believe just as we do that with appropriate investment and just the right amount of supports, our loved ones can accomplish amazing things!

How many awareness walks are held in Wisconsin each year? 

DSAW hosts 7 Awareness Walks each year. The dates for the 2017 Walk are:

• Kenosha/Racine/Walworth - August 19, 2017 
• Green Bay - August 27, 2017 
• La Crosse - September 16, 2017
• 21st Annual Statewide Down Syndrome Awareness Walk - September 24, 2017 
• Chippewa Valley - September 24, 2017 
• Fox Cities - October 7, 2017 
• Sheboygan - October 14, 2017 

How are funds from awareness walks used?

All proceeds from the Awareness Walks go towards DSAW's life-changing programs and services, including Parent's First Call, Medical Outreach, Fraternal Support & Programming, DSAW-Family Services (one-on-one support, Roadmap Sessions, and transition services), Educational Programming, Awareness Programming, Advocacy, and more.

Are there other activities at awareness walks?

Yes! Along with the walk itself, all of our walks plan exciting pre-walk festivities, contests, prizes, and delicious food. We call this our "family festival" -- the Awareness Walk is an amazing day to celebrate our friends with Down syndrome with your entire family!

Why should I form a team?

It’s the perfect way to celebrate your loved one with Down syndrome. This day, this walk, and this team are all for them!

You get to participate in a BIG Down Syndrome Awareness party. Trust us, you don’t want to miss it!

Your team can be as large or as small as you want. Your team can have 2 people, 200 people, or 2,000 people! Invite your friends, family, neighbors, coworkers, church family, or rotary club to join in the fun. 

For our Milwaukee and La Crosse Walks, you don’t even have to be present to form a team! When you sign up as a "Virtual" Walker, you commit to run or walk in honor of your loved one with Down syndrome. Then, post photos of your walk/run on DSAW’s Facebook Page! Whether you’ve moved away from Wisconsin, will be on vacation, or want to support your loved one who lives in Wisconsin, our community extends far beyond our state’s borders. 

Your fundraising changes lives. Although fundraising is optional, the difference you make in the lives of more than 4,500 families across the state is tremendous. Whether you raise $10 or $10,000, YOU are making a difference for people with Down syndrome and their families in Wisconsin. Some teams choose to fundraise a LOT and compete for our top fundraising prizes (which are amazing, by the way), and some teams choose to fundraise just a little bit. Just remember, fundraising does not have to be scary! Most people are happy to give to a cause that is important to you and your family.

Why form a team? Because it takes a village to raise a child. When you invite someone to join your team, it’s one more way of saying “thank you” -- “thank you for supporting my loved one with Down syndrome!”

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This blog post is sponsored by Erie Insurance.

Raising Awareness For World Down Syndrome Day

Dear DSAW Family,

Happy March!! March is one of my favorite months of the year because March 21st is World Down Syndrome Day. While we celebrate the beautiful gift of Down syndrome every day, March 21st is set aside every year as an international holiday – the day the rest of the world celebrates with us. This year, we are making this celebration BIG, and we are celebrating all month long.

This month is all about awareness – raising awareness and acceptance of our amazing friends with Down syndrome. We know how incredible they are, now let’s shout it to the world!

We have some fun ideas and easy ways that you can raise awareness this month:

1. Raise awareness everywhere, every day!
    
   1. Change your cover photo to educate your friends and family about World Down Syndrome Day and how we are #morealikethandifferent. Click here to download the photo!
       
   2. Print out these Down Syndrome awareness cards to hand out at school, work, or local businesses. This is an easy way to spread awareness wherever you go! Click here to download the printable cards. 
       
   3. Share our special World Down Syndrome Day photo that we’ll post on 3-21. Stay tuned!
       
2. Join us in rockin’ your crazy socks on March 21st! Crazy socks have become a symbol of World Down Syndrome Day – everyone is unique and beautiful. Use the hashtag #DSAWCrazySocks in your posts for a chance to be featured on our page!
    
3. Raise money for DSAW's Statewide Parent's First Call Program with a Dimes for Down Syndrome campaign! Click here to download our printable label and tape it to a coffee can/other container. Place the containers at local businesses, your child’s classroom, or your office. The group that raises the most money will receive a pizza or donut party delivered by our Self-Advocates with Down syndrome. Send in your change, or start a fundraiser online (click here to visit the Dimes for Down Syndrome website).
    
4. Find a DSAW World Down Syndrome Celebration near you!

Not only are we celebrating World Down Syndrome Day this month, but we are also launching the DSAW Statewide Parent’s First Call Program by sending materials to more than 400 medical professionals in Wisconsin, launching billboard campaigns, and unveiling our new DSAW Parent’s First Call Magazine.

When you raise awareness for Down syndrome in your local community, you are not only raising awareness for your child, neighbor, or sibling… but you are raising awareness for individuals with Down syndrome who aren’t yet born.

The termination rate for fetuses with Down syndrome is still well over 80%. Through DSAW’s awareness campaigns and the Parent’s First Call program, YOU can be an integral part of reaching expectant parents who may one day face a terrible decision.... expectant parents who may look back on your work, your joy, your hope… and decide that this life is actually very beautiful. YOU can make that difference for families and individuals with Down syndrome in Wisconsin.

So join us. Raise your voices for Down syndrome! Change your cover photo, rock your crazy socks, and participate in Dimes for Down Syndrome. Because at the end of the day, we are #morealikethandifferent.

Warmly,
Dawn