Meet a DSAW Leader: Jessica

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Hello everyone! My name is Jessica Raschka and I am the President of the DSAW-Central WI chapter. I got involved with our local chapter after deciding to start the process of adopting a baby with Down syndrome.

This is not where my journey of Down syndrome started. I have always been drawn to individuals with Down syndrome and that lead me to an education in special education. I worked as an ABA therapist in the MN school district. I had quite a few students on my caseload who had Down syndrome. I later went on to proving ABA privately in home for families. Along with ABA I started to advocate for families in IEP meetings.

In 2009 my husband and I opened a store for special needs kids and their families. We sold equipment for therapy, visual aids, adaptive equipment and toys. Sadly we had to close our doors.

We were blessed with four amazing kids who have special needs themselves. We have a rare chromosome duplication called Duplication 15q13.3. Our kids also deal with autism, epilepsy, OCD, sensory processing disorder and feeding issues. So when it came to adopting we were happy to look into special needs adoption. After much prayer we decided to pursue adopting a baby with Down syndrome. That's how on Aug. 6th we came to be parents to a special little boy that we named Corbin. We are now apart of the Lucky Few!!

 

Looking Back on August 2017

Milwaukee

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Family Pool Party
We had an awesome time at our Family Pool Party on August 12! More than 10 families joined us for an evening of swimming and splashing around at Hales Corners Pool.

21st Annual Tom Pipines Golf Outing
On August 16, we hosted our 21st Annual Tom Pipines Golf Outing at Western Lakes Golf Course in Pewaukee! We had a gorgeous, fun day out golfing and a wonderful dinner and program in the evening. We had incredible raffle baskets and auction items to raise money for our life-changing programs and services! A huge THANK YOU to everyone who participated, volunteered, and donated. 

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Respite Day Camp 
We continued our Respite Day Camp at our State headquarters during the month of August! On two Wednesdays, middle school and high school students with Down syndrome joined us for a day-long respite camp. In August we practiced reading, talked about social skills and internet safety, took a field trip to Panda Express to work on exchanging money, had an awesome dance party, and more!

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp! This month we continued rehearsing our play and are excited to perform it!

September's theme is Harvest/Healthy Cooking. We’ll be using items from the garden to cook tasty and fresh dishes. This month will grow independent living skills and continue to introduce the self-advocates more to gardening. Bootcamp meets on Tuesday nights at 6pm. Click here to sign up (ages 15+)!

Cooking with the Kiddos
This month at Cooking with the Kiddos we made delicious chicken teriyaki shish kabobs. Cooking with the Kiddos is a fun evening of family bonding, plus a free meal... what could be better? Come cook with us next month!

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Motor Skills Playgroup
We again hosted our bi-weekly Motor Skills Playgroup at our State office! This group is a fun chance for children to learn occupational therapy skills in a free environment, while parents enjoy coffee and each other's company. Join us in September to hang out with other families and let your child play!

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in August. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Come out to Young Leaders Academy in September!

Tween Club
We had our monthly Tween Club again this month. In order to prepare for the new school year, we made our own pencil cases! Parents dropped off their tweens at the State office for a night of crafts, games, and snacks, and then parents got to enjoy a casual night at our Parent's Night Out! Sign up for Tween Club in September. 

Parent's Night Out
We hosted our monthly Parent's Night Out at Club Paragon again in August. Join us for next month's Parent's Night Out on September 8!

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Family Movie Night
DSAW families came to our State headquarters at the end of August for a slumber party-themed movie night! We watched Beauty and the Beast and enjoyed some snacks!! 

Club DSAW
This month at Club DSAW we took a trip to Tee Aire mini golf course in Brookfield! Self-advocates joined us for an afternoon of mini golf, and two of them got a hole in one!! We treated ourselves to custard at Culver's after golfing. 


Green Bay

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Haircut Fundraiser
We hosted a Haircut Fundraiser for our Awareness Walk on August 6 at HYPE Hair in Green Bay!! We were even featured on WFRV Channel 5 :) Click here to see the news story about our awesome fundraiser.

 

 

 

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Awareness Walk 
DSAW-Green Bay held our 9th Annual Down Syndrome Awareness Walk on Sunday, August 27! It was a beautiful day (the rain held out just for our event!) with amazing raffles, games, music, a train, and more. Almost 600 people attended the event, and together we colored a beautiful world! THANK YOU to everyone who planned, participated, donated, and volunteered!! We could not have done it without you. Check out the press coverage of the walk!


La Crosse

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Holmen Kornfest Parade
Walk royalty Lila Dummer and Sam Malin rode through Holmen in style (pictured right) at the Kornfest Parade on August 19! DSAW families walked in the parade to raise awareness of DSAW and Down syndrome in the community.

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Beer by Bike Brigade
On August 19,  DSAW-COTH-GLA was spotlighted as the nonprofit group at the Beer By Bike Brigade (BBBB) Ride. A fun-loving group of self-advocates, parents, siblings, grandparents, friends and caregivers united to promote the amazing work DSAW is doing in the Greater La Crosse Area. Heather Coleman, Katie Sue Cavanaugh, and Eliza Levendoski melted the hearts of 300+ riders as they handed out buttons and welcomed riders at Riverside Park. But it was Aaron Hulse who stole the show! He fully participated in the ride, after biking from Onalaska to La Crosse. It was wonderful to see Aaron making new friends and showing off his bike to the BBBB group. He showed everyone it doesn't matter if you have a bike worth $10,000 or $2; it doesn't matter if your bike has 1 wheel, 2 wheels or 3 wheels; it doesn't matter if your bike is red, black, purple, multi-color or rust; and it certainly doesn't matter if you have an extra chromosome.  

BBBB riders are very similar to DSAW. They are an eclectic group of people- some are there to socialize, some to meet new people, some to bike, some to drink, some to support local business, some to support local non-profits, and some that just want to see what the hype is about- all coming together to have a good time and support the incredible community we live in! BBBB was so impressed with DSAW-COTH-GLA that they want to throw a pop-up fundraiser for us in November. Stay in the loop by liking Beer by Bike Bridge and Down Syndrome Association of WI-Lacrosse Chapter on Facebook.  
 
 Thank you to the Beer By Bike Brigade for spotlighting our organization.  A huge THANK YOU to our volunteers/members for joining the ride and being the best darn models for our new shirts.  Click this link to order your very own I <3 HOMIES WITH EXTRA CHROMIES shirt. 

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Parent's (& Family) Night Out
Parents (and kids too!) had a great night at Deerwood Park in Holmen. Our planned Parent's Night Out turned into a Family Pizza Party! Parents got together, and childcare was provided at the park so that parents could enjoy some time relaxing together!


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Kenosha/Racine/Walworth

DSAW-KRW hosted a successful Family Zoo Day at the Racine Zoo on August 19! Many people came out to enjoy a gorgeous day at the zoo, games, exciting raffles, crafts, and a lunch catered by Texas Roadhouse.


Chippewa Valley

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St. Croix River Valley Supported Families Meeting
At the beginning of August, DSAW state staff traveled up to the St. Croix River Valley coverage area to host an All-Supported Families Meeting for families interested in expanding DSAW's programs and services in the St. Croix River Valley. Attendees enjoyed fraternal support, ate pizza, and got to learn about DSAW! If you're in Pepin, Pierce, Dunn, St. Croix, or Polk county, join our St. Croix River Valley Facebook page to stay connected and up to date on our upcoming events!

Family Pool Party
DSAW-Chippewa Valley also hosted a free Family Pool Party at Wakanda Waterpark in Menomonie! DSAW families came out to splash around at the pool, and rainy weather forecast held out for us! 


Central WI (Wausau)

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DSAW-Central WI traveled to Amherst for a trip to Peterson Dairy Farm on August 12! Families enjoyed lunch, games, sensory tables, a hay ride, and petting and feeding the farm animals.


Fox Cities

Our Fox Cities chapter hosted a free summer pool party in August. Families joined us at Doyle Park Pool in Little Chute for an afternoon of fun in the sun! Click here to check out a video of the fun!


Birth Announcement

It can be hard to know how to announce the birth of your baby to friends and family. Take a look at our sample birth announcement to give you some ideas:

Hello everyone! We are happy to report the birth of Evan Michael. He joined us yesterday at 2:36pm. Mom is recovering well and is likely headed home tomorrow. Evan weighed in at 7 lbs 1 oz and was 19.5 inches long.

We’d also like to share some additional news we learned shortly a er he was born - Evan has been diagnosed with Down syndrome. The last day has been an emotional rollercoaster but we are all doing well. After spending some me learning more about DS, we know that Evan will be a wonderful addition to our family and we are looking forward to watching him reach his own milestones just as his sister has done herself.

We realize that our announcement may prove a little awkward for some - some we’ve told in person have a hard time knowing what to say. “Congratulations” works just fine! The past 24 hours have made us realize how lucky we are to have the support of many caring family and friends and we look forward to sharing Evan with everyone.

If you’d like to learn more about Down syndrome, we encourage you to check out online resources, such as the Down Syndrome Association of Wisconsin or the National Down Syndrome Society. After reading about DS, we hope you’ll know, as we do, that Evan can and will have an amazing life.

We promise to report back soon with pictures and an update!! 

Meet a DSAW Leader: Stacy

Hi everyone! My name is Stacy Schneider and I am an Advisory Board Member with DSAW-Green Bay. I became involved with DSAW shortly after my daughter Zoey was born in 2013. She has introduced me to a whole new world that I had previously been missing out on. Zoey has a younger brother named Zander, whom she adores, but also likes to show who’s boss at times. We have two miniature dachshunds named Deuce and Bella. I work full time as a Product Engineer for a contract furniture company that my husband Tony also works for as a Project Manager. Our family enjoys spending time together, going for walks, and watching movies.

Since the birth of our daughter we have met many different families and shared our experiences with each other by being involved with DSAW.  Last year I volunteered to help with the walk committee and enjoyed planning for our biggest fundraiser of the year. This year I became a board member and have helped organize playgroups, parents’ night out, a family movie event, and our first Strider Bike camp for younger kids. We had 12 campers attend a week long adventure to help them learn about balance and coordination. It was a blast!

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!

Looking Back on July 2017

Milwaukee

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Down Home BBQ
We had a fantastic day at our Down Home BBQ on July 8. We partnered with Gigi's Playhouse Milwaukee and Wisconsin Upside Down to host over 200 people at our state headquarters in West Allis! We had food, a splash zone, a live band, inflatables, yard games, a fire truck, crafts, face painting, and more! Thank you to all who helped us make this event possible. 

 

Respite Day Camp 
We officially began our Respite Day Camp in July! On Wednesdays at our state headquarters, middle school and high school students with Down syndrome are invited to join us for a day long respite camp. In July we practiced money counting and reading, played outside, did a social skills activity, and planned a menu of food that we cooked. Sign up for respite day camp on Wednesday August 23 and August 30 for a supportive environment for your child.

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp. This month's topic was Acting! We've been rehearsing a play each week, and we will continue to rehearse through August for our big final performance. 
Consider signing up for our FREE August Bootcamp on Acting (ages 12+).

Cooking with the Kiddos
This month at Cooking with the Kiddos we made cheeseburgers and a scrumptious apple crisp. Cooking with the Kiddos is a fun evening of family bonding, plus a free meal... what could be better? Join us next month.

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Motor Skills Playgroup
Our Motor Skills Playgroup at the state office in West Allis continues to grow! This group is a fun chance for children to learn occupational therapy skills in a free environment, while parents enjoy coffee and each other's company. Join us in August to hang out with other families and let your child play!

 

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in July. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Come to Young Leaders Academy in August!

Parent's Night Out
We had a fun group of parents join us for Parent's Night Out at Club Paragon in Greenfield in July. Don't miss next month's Parent's Night Out!

Family Movie Night
We will have an awesome night watching Madagascar outside, drive-in style at the end of July! Join us in August for another drive-in experience!


Green Bay

DSAW-Green Bay hosted their monthly playgroup at the beginning of the month at Sand Acres Park in Ashwaubenon! Join us on August 5 for our next playgroup at Pamperin Park!

 

We also hosted a Dad's Golf Night Out at The Woods Golf Club in Green Bay! Despite the rain, Dads were able to come together for a fun dads-only evening.

 

Our moms had a night out too! DSAW-Green Bay moms got together in Sturgeon Bay for an evening of food and for a pontoon boat ride on the lake. We will not be holding a Mom's Night Out in August due to our Awareness Walk, so come hang out with DSAW moms again in September. 


La Crosse

DSAW-COTH-GLA partnered with the La Crosse Area Autism Foundation and the Dahl Family YMCA to offer cooking classes for tweens, teens, and adults with special needs. The sessions were great and the self-advocates made several fruity treats! The classes were even featured in the La Crosse Tribune! Click here to read the article.

We had lots of fun at our Breakfast Club fundraiser on July 15. We had 3 Guest bartenders from UW-L Motor Development Program, Garth, Quintin, and Joe. They were lots of fun! We had 2 members Jenny Levendoski (mom of Eliza) and Andrea Finney (mom of Levi) come and volunteer to have eggs broken on their head in a fun game called egg roulette; customers buy eggs for $10 and they can break them over the volunteer's head, But the egg may be raw or maybe hard boiled! If you missed it don’t worry! We will be doing it again next year - just keep a look out for our upcoming events. 


Central WI (Wausau)

DSAW-Central WI hosted a pool party on July 15 in Wausau. Around 50 people came out to enjoy the summer weather. Our event even made the local news! Chapter leader Miriam Marting was interviewed on TV, and an article about the event was published online. Read the article here!


Sheboygan

 

DSAW-Sheboygan hosted a family picnic at Lakeside Park in Fond du Lac this month. Families came together to grill out, play yard games, explore the park, and meet new friends. We had sack races and raffle drawings, and the park had an animal barn, train, carousel, and huge playground!! It was a wonderful day for DSAW families. 


Chippewa Valley

DSAW-Chippewa Valley will host a Parent's Night Out in Chippewa Falls at the end of the month. Parents and caregivers of individuals with Down syndrome will be able to connect over free appetizers and casual conversation. 


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:

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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!”


 
 

This blog post is sponsored by Erie Insurance.

Questions About Birth to Three

What is Birth to Three, and what is its purpose?

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Birth to Three is Wisconsin’s Early Intervention program. The concept of “early intervention” is quite simple. If a child with a developmental delay receives proper help early on, problems in the future may be minimized. A child, his/her family, and the educational system will benefit by the reduced need for long-term intervention throughout the child’s school years.

What kinds of things will my child with Down syndrome do in Birth to Three?

Your child will participate in a variety of activities planned by licensed therapists, teachers, and nurses. The setting for these activities -- which are designed to provide physical, occupational, and speech therapies as needed -- may include regularly scheduled home visits, play group activities, individual therapy at home, daycare or hospitals, or other combinations that work for your family. You child’s record will be kept confidential.

Will I have any say regarding my child’s participation in any of these therapies?

Absolutely! After eligibility is determined (and most children with Down syndrome usually qualify), the Individualized Family Services Plan (IFSP) is written with help from the parent(s) and services begin.

When should my child start Birth to Three Services?

Some families choose to enjoy their babies and adjust to life with a new little one before jumping in. Others choose to start therapy right away. Ideally, a baby would start therapies within the first 8 weeks of life if that works in your family schedule.

Is there an age limit to receiving Birth to Three services?

The age limit is newborn to three years. 

 

Types of Therapies

Pediatric Physical Therapy (PT) is the treatment of children with physical disabilities by a licensed professional physical therapist who is educated and trained in the diagnosis and treatment of children with physical disabilities. The goal of PT is to improve care and provide a treatment program to obtain or restore the highest level of independence and function in quality of movement, walking, strength and endurance, gross motors skills, posture, positioning for functional skills, coordination, and mobility for the child with the disability.

Pediatric Occupational Therapy (OT) is the treatment of children with physical, emotional, and/or intellectual disabilities from birth to 21 by a licensed occupational therapist educated in a variety of diagnoses and therapies for such children. The goal of OT is to help make learning possible by helping children develop the underlying skills that will lead to independence in personal, social, academic, and vocational activities. This includes remediation of difficulties the child may encounter with ADLs (Activities of Daily Living) such as dressing, grooming, feeding, etc.

Pediatric Speech Therapy addresses the child’s complete communicative needs. This often begins with the development of non-verbal communicative skills such as attending to the speaker and the activity, taking turns, and making appropriate eye contact. It is designed to help with speech disorder, often referred to as articulation or phonological disorders - problems with the way sounds are made or how sounds are sequenced to form words; oral-motor problems resulting in difficulty producing speech sounds; and delays in feeding skills. A speech-language pathologist is a specialist in the normal development of human communication. The Certificate of Clinical Competency (CCC) assures you that a speech-language pathologist has been qualified to provide clinical services by the American Speech-Language Hearing Association (ASHA). 

 

For more helpful tips for new and expectant parents, check out the digital version of the Parent's First Call Magazine.

 

 
 

This blog post is sponsored by Dries Painting. Thank you for your support!

Meet a DSAW Leader: Rachel

Hi everyone! My name is Rachel Reit, and I am the Programs and Communications Coordinator at DSAW. I work out of the state headquarters in West Allis. I started with DSAW in September 2016 as a Marketing and Communications intern, and I joined the staff in my new role in January of 2017! I graduated from Marquette University in May with a Master of Arts degree in Communication, and I have Bachelor’s degrees from Marquette in Communication Studies and Psychology.

I always have known that I want to spend my life helping others. It’s been my dream to work in the nonprofit sector, and I’m so thankful to be a part of the DSAW family! I spend most of my hours here working on planning events, marketing, and running the social media accounts for our five outstate chapters (Central-WI, Chippewa Valley, Green Bay, La Crosse, and Sheboygan). I also am working on outreach to areas of the state where there currently is no DSAW coverage. We hope to reach everyone in Wisconsin with our programs and services! I cherish the time I get to spend with the self-advocates, and I get overly excited to see cats and deer walk by my window. 

In addition to all of my beautiful friends with Down syndrome at work, my boyfriend’s older sister Sarah also has Down syndrome. She’s been making me laugh and supporting me for the last four years. She and all of my DSAW people encourage and inspire me every day. I am passionate about our mission, and I’m thrilled to be changing lives across the state of Wisconsin!

What do I do when I’m not at the office? I love hiking and camping, spending time with my family, reading, eating anything chocolate, having Disney sing-a-long sessions with my brother, and volunteering at my church.  

If you have questions, suggestions for events, or just want to say hi, feel free to email me at rachel@dsaw.org or give me a call at 414.327.3729 ext 104.

Top 9 Reasons to Volunteer

There's no doubt that volunteering makes a positive impact. Ever wondered about the full benefits? Learn more about the hidden benefits of volunteering:

1. Helping people makes you feel better

Positive psychologists have studied the feeling of happiness in great depth, and it has been found that acts of kindness benefit both parties. When you volunteer, you are giving without expecting to receive. What you'll see is that happiness is contagious! Volunteering will give you a sense of purpose and accomplishment. Seeing the joy your work brings to other people can warm your heart in an indescribable way. 

2. Give back where you're passion lies

Without the incentive of money, you know that you are volunteering because you truly care. This opportunity allows you to get involved in organizations that mean something to you. It will feel amazing to be making a difference in an area where there is a personal connection.

3. Change someone's life

There is truly nothing more rewarding than seeing your actions better someone else's life. Many of the organizations and programs that offer volunteering opportunities rely heavily on their volunteers. Without people actively choosing to give back to their communities, many programs and services could not run.

4. Hooray for resumés!

Whether you're looking to get a job or be accepted to your dream school, volunteer experience glows on your resumé. Being a wholesome person makes you automatically stand out next to any competition.

5. The learning experience

Volunteering can open you up to a world you might not be used to. Most volunteer positions do not require previous experience. You may walk away with a new perspective and unique set of skills. 

6. Make connections

Volunteering can be a wonderful way to meet people with common interests. It's also a great way to meet people who are different from you! Either way, the volunteer setting is perfect for making new connections.

7. Become part of a new community

We always hear people hype up volunteering by saying we should "give back to the community." It goes much deeper than that. Within the larger community as a whole there are smaller communities. Each volunteering opportunity gives you a window into a community and culture that you might not know a lot about. 

8. Insider info

Volunteers often get to see a different side of an organization that regular employees or members might not have access to. You'll get the inside scoop on how things are run - who knows, you may even wind up working there someday!

9. See the world 

Volunteering doesn't always have to be in your neighborhood. There are many volunteering opportunities that allow you to venture outside both your hometown and your comfort zone. Mixing traveling with volunteering can make for an incredibly unique and exciting experience. 

 

Volunteering is appreciated wherever you go! If you're interested in volunteering with DSAW, check out our summer opportunities:

 

Sources:

https://www.gviusa.com/blog/17-excellent-reasons-to-volunteer/

https://www.psychologytoday.com/blog/teen-angst/201701/achieving-happiness-helping-others

https://www.psychologytoday.com/blog/the-third-age/201403/5-reasons-why-you-should-volunteer

http://www.positiveforce.com/12-reasons-people-volunteer/

Looking Back on June 2017

Milwaukee

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Milwaukee Brewers Family Outing
We had a GREAT time at our 14th Annual Milwaukee Brewers Family Outing on June 4th. We completely sold out our tickets again this year! We enjoyed a fun and delicious tailgate before watching the Brewers win. Thanks to everyone who joined us, especially to our DSAW-Chippewa Valley Chapter for traveling down to spend the day with us!

Supporting Positive Behavior in Children and Teens with Down Syndrome Seminar
DSAW partnered with the Down Syndrome Clinic at the Children's Hospital of Wisconsin to bring Dr. David Stein to speak about behavior. Each participant received Dr. Stein's new book! Feedback was fabulous -- thanks to everyone who joined us!

iCan Shine Bike Camp
Participants of our annual iCan Shine Bike Camp had a blast learning to ride a two-wheeled bicycle independently!! Participants spent 90 minutes per day in sessions. Progress in just one week is amazing!! Congratulations to this year's graduates. 

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp. This month's topic was Storytelling. Consider signing up for our FREE July Bootcamp on Acting (ages 12+).

Cooking with the Kiddos
We had a great time at Cooking with the Kiddos in June! This class is a great time of family bonding, plus a free meal... what could be better? This month we cooked up some delicious sliders. Join us next month.

Motor Skills Playgroup
Our BIGGEST group of families yet joined us for Motor Skills Playgroup at the State Office this month! This group is a fun chance for children to learn occupational therapy skills in a free environment, while parents enjoy coffee and each other's company. Consider joining us next month!

 

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in June. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Consider joining us in July!

Parent's Night Out
We had a great group of parents join us for Parent's Night Out at Club Paragon in Greenfield in June. Make sure to join us next month!

Family Movie Night
We had a blast watching Cars together at our June Family Movie Night. We brought sleeping bags abd enjoyed our movie outside, drive-in style! Join us in July for a Drive-In experience watching Madagascar!


Chippewa Valley

DSAW-Chippewa Valley took a trip down to Milwaukee to join us for our 14th Annual Brewers Family Outing on June 4th! We enjoyed delicious food, fun raffles, and a Brewers win!


Green Bay

DSAW-Green Bay hosted their monthly playgroup at the beginning of the month, and once again held the playdate at Optimist Park! Families had a great time. Join us in July!

 

We also hosted a fun Parent's Night Out at the end of June -- moms AND dads joined us! We had a great time getting to know one another, and have even planned Mom's and Dad's nights out for July! Stay tuned for more details. 

 

Finally, we hosted a Strider Bike Camp during the last week of June. Children ages 2-8 joined us to begin their journey towards independent bicycle-riding by learning how to ride a Strider bike. We had a blast!


KRW

DSAW-Kenosha, Racine and Walworth hosted a fun family event at Monkey Joe's on June 24th! We reserved the ENTIRE facility for our families with FREE entry. It was an awesome time! Join us next month for our DSAW-KRW Parent's Night Out.


La Crosse

June 24 was DSAW-COTH-GLA's Night at the La Crosse Loggers!  Our group sold 84 tickets in advance to receive $210.00 from the Logger Foundation.  The rain tried to ruin our fun but after a short delay the sun came out and the fans began to cheer.  Our own, Eliza Levendoski, strutted on the field to throw the first pitch.  Point, step and throw!  It was all smiles and laughter in the stands with our members enjoying baseball with old friends and making new friends.  During the 7th inning stretch the 2017 Awareness Walk Royalty, Sam Malin and Lila Dummer, proudly represented DSAW by accepting our fundraising check.  Thanks to all that attended!


Central WI (Wausau)

DSAW-Central WI (aka DSAW-Wausau) hosted a Parent's Night Out at Sconni's alehouse in June. Parents had a fun time getting to know one another and enjoying excellent food and drink! Join us next month for our pool party.


Preventing Summer Slide

We all look forward to summer vacation, but what happens when we let our brains take a break from school? Have you ever noticed your child struggling at the beginning of a new school year? It’s easy to forget what you’ve learned when you haven’t been actively using those skills. This is especially true for our friends with Down syndrome and other special needs. To help you, we've put together 9 ways to prevent summer slide.

1. Set Yourself Up For Success.

It’s important to keep up a routine throughout the summer months. Of course, your child won’t have the usual school work load, but you want them to still be engaged in learning. If practicing reading, math problems, or speech becomes a habit, their skills will show great improvement. Hopefully, these activities can also be something your child looks forward to. Ask your child keep a journal each day about all the things that they have learned. Writing is a great way to exercise the mind.

 

2. Make Reading a Priority

Reading is one of the most common areas of decreased skills from one school year to the next. Set goals with your child by making a list of books they would like to read over the summer. Research has been done on developing reading skills, and it has been shown that six is the magic number when it comes to creating a summer reading list (Scholastic). If you choose six books for your child that aren’t too heavy, but aren’t too light, this can prevent their abilities from slipping. Plan a fun trip to the library and let your child pick out books that spark their excitement!

 

3. Build a Support Network of Other Parents

Having a solid support group does wonders. Bounce ideas back and forth with other parents and make it a team effort. You can also plan group activities with other families! A great way to meet parents of children with special needs is at a DSAW's Parent's Night Out. They are held regularly across the state. 

 

4. Find Education Everyday.

Encourage learning in everyday life and motivate your child to practice their skills consistently. On days you don't have anything specific planned, there are still ways to help your child exercise their minds. If you think about it, education can be found in any situation. Even activities such as cooking can help your child learn. Cookbooks involve reading and math! Taking a summer road trip? Listening to an audiobook along the drive can be a fantastic way to incorporate learning.

 

5. Summer Camps

There are always a number of specialized camps available during the summer months. Camps specifically for children with special needs include:

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Lions Camp 

Shepherds College 

Easter Seals Camp 

Badger Camp 

iCan Shine Bike Camp 

Wisconsin Youth Leadership Forum 

DSAW Respite Day Camp 

 

6. Summer Programs

Your child's school or local public library can be a wonderful resource. They often have summer programs that your child can be apart of. Keep in mind, you can also petition to have Extended School Year Services (ESY) included in your child's IEP. Click here for a guide on ESY. 

 

7. Recreational Opportunities

Consider looking for recreational activities to keep your child's mind and body active. Physical activity takes a lot more brain power than one might expect. Consider checking out Special Olympics, Miracle League, and more! 

 

8. Supplemental Therapies

After a full school year of progress in PT, Speech or OT, nothing is more deflating than losing skills due to lack of therapies over the summer. If possible, enroll your child in supplemental summer therapy! DSAW-Fox Cities is offering speech, OT, and behavior therapy this summer, and DSAW-La Crosse is offering access to speech therapy. If summer therapy is cost prohibitive, consider applying for a DSAW Member Grant. We also recommend asking your current therapists for lists of activities that you can be doing over the summer.

 

9. Don't Forget About Behavior and Social Skills

It may be easier to stay home over the summer, but nothing will improve your child's behavior and social skills like exposure to new people and new experiences! Organize playdates (with typically-abled friends too!), visit new places, and always work on appropriate social behavior. Summer is a great time for experiential learning.

 

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Learning doesn’t have to go on summer vacation, and it definitely doesn’t have to be boring. There are many ways to make practicing educational skills fun for your child!

 

 

 

 

 

 

 

Sources:

http://www.scholastic.com/parents/resources/article/developing-reading-skills/three-ways-to-prevent-summer-slide

https://www.cli.org/blog/5-tips-for-preventing-summer-slide-2/

http://blogs.edweek.org/edweek/education_futures/2016/06/9_tips_for_preventing_the_summer_slide.html

https://littlescholarsllc.wordpress.com/10-ways-to-prevent-summer-slide/

 

This blog post sponsored by Cardinal Capital Management

 
 

Looking Back on May 2017

Milwaukee

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp. This month's topic was Storytelling. Consider signing up for our FREE June Bootcamp on Public Speaking.

 

Cooking with the Kiddos
We had a great time at Cooking with the Kiddos in May! This class is a great time of family bonding, plus a free meal... what could be better? This month we cooked up some delicious sliders. Join us next month.

Motor Skills Playgroup
Families joined us for Motor Skills Playgroup at the State Office this month! This group is a fun chance for children to learn occupational therapy skills in a free environment, while parents enjoy coffee and each other's company. Consider joining us next month!

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in May. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Consider joining us in June!

Parent's Night Out: ComedySportz
We had more than 50 parents join us for a special Parent's Night Out featuring ComedySportz. We laughed until we cried and enjoyed fantastic company. Make sure to join us next month!

Family Movie Night
We had a blast watching Minion Movie together at our May Family Movie Night. We brought sleeping bags and snuggled in for this family-favorite. Join us in June for a Drive-In experience watching Cars!

Family Activity Day
We had a great time painting pottery at Family Activity Day. We had two new families join us! Thanks to everyone who came out for this fun event.


Green Bay

DSAW-Green Bay hosted their monthly playgroup at the beginning of the month, but celebrated the warm weather by moving the group outdoors to Optimist Park! Families had a great time. Join us in June for another go at Optimist Park!

We also hosted a Family Outing at the NEW Zoo on May 28th. We had a blast spending time together and looking at all the animals!


KRW

DSAW-Kenosha, Racine and Walworth hosted a Pottery Painting Party in May. We met at Mrs. Myers' Reading Room in Racine for a fun afternoon of painting pottery and enjoying one another's company. Thanks to Mrs. Myers' Reading Room for hosting us! Make sure to join us next month for our Monkey Joe's event!

 


La Crosse

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What a fun Parent's Night Out at Branches Winery in Westby!  A fun group of us braved the cold and rainy night. We are all bonded by our love for someone with Down Syndrome, but we become friends by learning more about each other at events like these where we can talk without the interruption of children. Cheers to a fun night and great company! Instead of a Parent's Night Out in June, we're hosting a Family Night at the La Crosse Loggers Game.    

We also hosted our monthly Music Group. Consider joining us for this FREE group in June! 
 


Sheboygan

DSAW-Sheboygan hosted a Family Bowling Event in May! Families had a great time enjoying free bowling complimentary of the chapter, as well as meeting new friends. 

Join us for our June Parent's Night Out!


Central WI (Wausau)

DSAW-Central WI (aka DSAW-Wausau) hosted a Mom's Coffee Date at the beginning of the month. The event was very well attended, and moms ended up sticking around talking and getting to know one another for much of the afternoon.

The chapter also had a table at the groundbreaking for the new JoJo's Jungle playground. We had a great time celebrating this accomplishment and helping to spread the word about our new chapter.

Creative Strategies for Walk Fundraising

By Andrea Finney, DSAW-La Crosse Walk Raffle Captain & Mom to Levi

Asking for help is a very difficult thing for me to do. I don’t like to ask for money, I don’t like to ask for people to pitch in, I even feel guilty about asking a babysitter to come over – and I am paying them! All ridiculous, I know… So when it comes to fundraising, I struggle. It is out of my comfort zone, but it’s something that needs to be done for our group to thrive. This year I am really putting our family out there to make a difference. We don’t really have a good support system in the way of asking family and friends for financial support, so we are thinking out of the box. How can I contribute to the group and how can I make a difference for my son and every other person in our community with Down Syndrome?

The words are hard for me, but I sure can put together an email! I made the decision that I wanted to be an integral part of putting together the raffle for the walk. This is one way that I can help to raise money. I can research, and I can send out tons of emails talking about our kids and asking for support in that way. In researching companies that make donations, other groups raffle strategies, I see many other opportunities for fundraising. When I narrowed that down to opportunities that are available LOCALLY, there really are a lot of options available.

I started thinking about team fundraising around World Down Syndrome Day. I work for a company that is pretty involved with community, so I thought I would start here. I spoke with our Human Resource department and I was able to get an approval for a special “Jean’s Day,” with the proceeds going to DSAW.  This day raised close to $350 on behalf of Levi’s Top Guns.

The fundraiser we were able to do that really got the kids involved was a carwash. My husband manages the Auto Value in West Salem, so this made sense to me. He is a car guy, his business sells car care products, and there is a steady stream of customers in and out of their parking lot. His store sponsored the supplies needed, I supplied the kids, and we raised almost $400 for our team. This was an event that Levi was able to participate in, so for me, that was a huge win. He is just 6 years old, but HE is raising money for HIS team! It was a great day, a great experience for him, and something we will continue to do in future years for our walk team fundraising.

Another opportunity we had with Auto Value was networking through the stores. This is a company with many locations in our area. So while a large sponsorship was not feasible for his store budget, he made the connections with other store managers. Everyone pitched in a little which was manageable for their charitable giving budgets, but it made a huge impact for an overall donation. He was able to collect $500 from 5 stores working together.

There are a lot of other opportunities that we are hoping to participate in over the months leading to the walk as well. As a group, there is a Brat Barn through Festival Foods, a “Save Ferris Day” at the Breakfast Club, and a ride through the Beer By Bike Brigade, to name a few. There are also opportunities through local restaurants to have a percentage of sales donated – Culver’s, Dairy Queen, and Arby’s are a few examples – minimal effort, major impact to our loved ones. It just takes a phone call to get the wheels in motion, and maybe a little manpower for a few hours on our parts. There are companies locally that “round up” for charities, there are chicken Q’s, or there are just utilizing your personal contacts. Utilizing them for monetary donations, or for product donations to be used for our raffle. Think of who you know… do you or someone you know do personal sales? Someone that manages or has connections at a local business? Someone that offers a service? These are all things that can bring in funding to sustain our chapter from year to year by way of the walk raffle.

This group has been such an important part of my family’s lives. The resources we have because of it, and the people we have met along the way. I want this to be available to our family for many years to come, and I want Levi and his friends to have endless opportunities because of the work this group does. To make that happen, we have to work at it. I am excited to be a part of this and make things happen and I look forward to finding new opportunities to make a difference!