Archive for the ‘Parenting’ Category

Easter egg hunt prompts thoughts about inclusion

Friday, March 29th, 2013

 

By Alie Kriofske Mainella, Youth Leadership Specialist

 

Well, it’s springtime, which means for many people that Easter is right around the corner. And one thing that Easter calls to mind for me is the lovely tradition of the egg hunt. Recently, I was participating in an egg hunt with several small children. The leaders of the egg hunt called all the children together and told them that the Easter Bunny had hidden enough eggs for each of them to find 11. The leaders said that each child should hunt until they found 11 eggs and then stop. This way, each child would get the same amount of eggs and it would be fair. 

 
Some of the children got their 11 eggs and cheerfully cried out, “I found all mine!” and made their way to the party, sitting and halving the plastic shells to find the chocolate and jelly beans inside. Some of the children cried in frustration, “I’ll never get all 11! The other kids are finding them all!” And then their parents would point out eggs for them or the other children who were finished would helpfully call out, “There’s one!” and point at the pink and blue eggs peeking out of the snow. Some children dismissed the 11-egg rule entirely, filling their baskets to overflowing. I even heard one child yell, “I won!”

 

 easter basket with eggs

 
Watching all this made me start to think: Is this a microcosm of society? Is it fair to divide the eggs evenly among all the children? Is it fair for the strongest, fastest or most determined children to get as many eggs as their hearts desire? But what about the two-year-old who can’t move that fast? What about the two children with physical disabilities who had to take more time to bend down and gather eggs from their hiding spots.  What if there was a child who was blind who couldn’t see the eggs? Or a child using a wheelchair who couldn’t reach for the eggs as easily or as quickly? 

 

One parent suggested setting aside eggs for those who had more trouble getting them for themselves. But, as I asserted, setting aside 11 eggs for that child is not even letting them participate in the hunt. And I know this: we ALL want to participate in the hunt.

 

Maybe the egg hunt is a microcosm of society, maybe it’s not. But people with disabilities do not want their eggs set aside for them. We want to participate fully in the egg hunt, or society—whatever the case may be. We want accommodations and modifications that ensure that we all have equal and full access to the egg hunt. And the job market. And our lives and places in society.

 

For more information about IndependenceFirst call (414) 291-7520 V/TTY.

 

 

Spring Training opportunities abound

Friday, March 29th, 2013

By Alie Kriofske Mainella, Youth Leadership Specialist

 

The Milwaukee Brewers are gearing up for opening day. It’s spring training time, not only for the Brewers, but also for everyone ready to get more active after winter.

 

As you think about your own spring training, here’s a list of adaptive sports that will be offered this summer through a partnership between IndependenceFirst and the Milwaukee Recreation Department (MPS):

 

Adaptive Swim (All ages)

This course is designed for individuals with physical disabilities who would like to enjoy the freedom water can provide. Learn to use the buoyant environment of water to walk, jog and swim.

 

Wheelchair Basketball, Recreation (ages 6 & up)

Join your friends as the basics of wheelchair basketball are taught. From passing and dribbling to shooting and scrimmaging, individualized skills will be emphasized. Work on improving overall fitness and endurance. Adaptive equipment will be provided, if needed.

 

Group getting ready to play wheelchair basketball.

 

Beep Baseball (ages 6 & up)

This version of baseball is played by individuals who are blind/visually impaired (the pitcher and catcher are sighted). Each game consists of six innings. Batters are allowed four strikes, and once they hit the sound-emitting ball they run to either third or first base. In the field, sighted spotters assist players to locate the ball and the object of the game is to field the ball before the runner reaches the base. Our program is recreational so the rules will be adapted to those participating.

 

Hand Cycling (ages 8 & up)

Join your friends as you learn to hand cycle around the neighborhood. We are planning on taking short trips to some of the paved bike paths around the area. This is going to be a fun, relaxing ride for all abilities. This is a new program open to all. We only have a limited number of hand cycles so we may need to make scheduled rides.

 

Inclusion Sports League (ages 10 & up)

Join this newly developed league where people without disabilities participate with individuals with disabilities in wheelchair sports. Even if you have never played sports in a wheelchair, the Inclusion Sports League will be a lot of fun for all participants. Teams will be formed on a weekly basis, so you can join as an individual. Equipment will be provided. Be sure to tell your friends about this great opportunity.

 

Adaptive Golf (ages 6 & up)

Swing into the summer season with an introductory three-week session of golf. This program is geared toward individuals with physical disabilities. Instructors will work with golfers individually, giving instruction on adaptations that can be made on the course. From the tee to the fairway and the bunker to the green, staff will focus on the rules and etiquette of golf in addition to improving your golf swing. Clubs can be rented for $3 per session. Carts will be available if requested.

 

Wheel Play (ages 10 & up)

Wheel Play is a newly formed group combining individuals with physical disabilities and others in the community to foster sports participation and a social outlet. The group gathers on Thursdays for social activities and Saturdays for sports participation.

 

Wheelchair Softball (ages 6 & up)

Softball is a team sport involving two teams competing to score points by hitting a pitched ball and circling four bases. A smooth, hard playing surface is used when playing softball. There are many benefits to playing wheelchair softball such as increasing hand/eye coordination, strength and endurance. All equipment is provided, so enjoy being part of a team and sign up today!

 

Biking Buddies and Adaptive Waterskiing are two more programs also offered by IndependenceFirst.

 

For more information about these programs and others or to be added to our sports and rec mailing list, please contact Kathy Mohar at IndependenceFirst at kmohar@independencefirst.org or 414-226-8375 V/Relay. More information about the programs offered in partnership with the Milwaukee Recreation Department can also be found at: http://www.milwaukeerecreation.net/adaptive-sports/our-programs.htm.

 

Happy spring training! 

 

 

IndependenceFirst offers rewarding opportunities for youth this summer

Thursday, March 28th, 2013

By Alie Kriofske Mainella, Youth Leadership Specialist

 

It may seem early to start thinking about summer, but many a parent is planning out summer activities for their children so here are IndependenceFirst’s Youth Leadership Program summer activity opportunities:

 

GirlsFirst will be held at IndependenceFirst on Mondays from 1 p.m. to 3 p.m. from July 1 through August 26. The program is for girls with disabilities of any kind, ages 8-18. Participants will create art and craft projects, poetry and journals. They will share snacks, make friends and have the opportunity to talk about subjects like female friendships, pathways to the future and all about themselves.

 

NEW this summer will be a boys’ social and support group for boys with disabilities of any kind. This will also be held on Mondays from July 1 to August 26 from 1 p.m. to 3 p.m. The boys will meet with a male group leader right next door to GirlsFirst so there will be plenty of opportunities for collaboration.

 

The Youth Leadership Summit for high school students with disabilities will be held June 15-19 at IndependenceFirst and again July 17-21 in Mequon at the Mequon Nature Preserve. Youth who attend the highly interactive summits will learn about transitioning from high school and about topics like employment, college, self-advocacy, healthy relationships and MORE. They will work individually and in groups, sharing and learning together. The summits also give participants the opportunity to express themselves through making music with the Figureheads, a local hip hop group. Youth will receive breakfast and lunch each day of the summit and will also receive a $100 stipend for their attendance. Applications are NOW AVAILABLE at www.independencefirst.org or by contacting me (info before). Applications are due on May 3.

 

Students work together at the Youth Leadership Summit

Working together at the Youth Summit.

 

Parents Matter, a class on positive parenting and how to be your child’s sexuality educator, will be offered once again in the evenings beginning in July/August. These classes are held in five parts, are free of charge and include dinner and incentives. Childcare also included upon request.

 

For more information about any of these programs, to receive an application for the Youth Leadership Summit or to register for GirlsFirst, the boys support group or Parents Matter, please contact Alie Kriofske Mainella, Youth Leadership Specialist at akriofske@independencefirst.org or by phone at 414-226-8112 V/Relay.

 

 

Celebrating the 20th anniversary of the FMLA

Tuesday, February 5th, 2013

 

By Kim Nerone, Fund Development/Special Events Coordinator, National Spinal Cord Injury Association – SE Wisconsin


Today family members of all ages express their heartfelt gratitude for the passing of the Family and Medical Leave Act (FMLA).


The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with the continuation of group health insurance coverage. It protects employees’ jobs so they cannot be fired for needing to take care of their family. 25 years ago, Wisconsin became one of the first states to pass FMLA at the state level. Today we celebrate the 20th anniversary of the passage of the federal law.


The following is a letter from Kim, a mother from Stevens Point, Wis. Excerpts from her letter will be read by Iowa Senator Tom Harkin on the Congressional Floor as part of the FMLA Anniversary this week. 


“Our family’s challenges began when our son began school. He entered school excited, inquisitive, and eager to learn; however, within the first year, he began to shows signs of anxiety, depression, and unwillingness to learn. My husband and I began seeking specialized treatment for him. Despite various medications and numerous therapies, our son’s condition worsened.


Finally, our son was diagnosed with Asperger’s, ADHD, Anxiety Disorder, and Severe Sensory Processing Disorder. As overwhelming as it was to hear the diagnosis, it was a huge relief to know there were therapies and supports available to help him. We were given the option to continue with his current school and medications, or keep him home and work on eliminating medications and focus on incorporating supports helping him to be successful.


 I applied for FMLA and began my 12-week leave. Without FMLA, I would have been forced to continue sending him to a school where he experienced extreme stress and fueled his desire to quit on life.


Parenting a child is hard enough, but parenting a child with disabilities has its own unique set of challenges. I had to fight and advocate to help him. FMLA gave me that opportunity. Because of FMLA, my son is now happy, stable, successful, and eager to achieve his goals in life.”


Kim and her son


Unfortunately, there are lobbyists who are proposing changes to the state law that would make it harder for Wisconsin families to care for their loved ones during health emergencies like Kim’s and after childbirth. 


Here’s what lobbyists are trying to do:


  • Under current Wisconsin FMLA, employees can substitute any accrued paid leave they’ve earned, like paid sick or vacation time, for unpaid leave. Proposed changes could deny workers the right to use their earned sick time. Workers could be forced to use all their vacation as part of FMLA.


  •  Under current Wisconsin law, workers are eligible for leave after working 1,000 hours in the preceding year. Lobbyists want to increase that total to 1250 hours. This means that some part-time workers who are eligible under the current law would lose job protection. 


  •  Under Wisconsin’s current law, employees can spread out their leave to care for a new baby as well as for a personal or family illness, but proposed rollbacks could force workers take their leave all at one time with no flexibility.


  •  Current Wisconsin law covers employers with 50 workers anywhere in the state. Proposed rollbacks would cut coverage if there aren’t 50 employees within 75 miles of their workplace–denying job protection to rural workers.


These are important issues. Here’s a link to find your legislators. Feel free to let them know where you stand. You just never know when YOU may need to take advantage of FMLA!


For more information about the FMLA, visit http://www.dol.gov/whd/fmla/.


Self-Advocacy includes knowing when to ask for help

Wednesday, January 16th, 2013

By Alie Kriofske Mainella, Youth Leadership Specialist 


As the Youth Leadership Specialist, I often get asked to go out and do trainings on self-advocacy. In a room full of parents and teachers of youth with disabilities, I’ll ask the audience to think about a time when they spoke up for the rights of their child/student. And then I ask them to think about how their child or student could have spoken up for themselves. 


After this activity, I often give the group lists of ways they can help their child learn self-advocacy skills during transition. 


  1. Learn what your disability is called and how it affects you.
  2. Make your own phone calls, appointments, etc…
  3. Identify what accommodations you use and how you use them.
  4. Solidify work skills (like time management, hygiene, interpersonal skills, etc…)
  5. Learn to self-accommodate
  6. Identify and learn to use assistive technology
  7. Use self-advocacy with parents!!!



Youth learning self advocacy
 

Youth learn self-advocacy skills at the Youth

Leadership Summit

 

Recently I gave this presentation to a group of parents and teachers, and at the end, one mom raised her hand and told a story about being at the DMV and the person working there challenging her son’s EARNED learner’s permit due to his disability. She stepped back and let him advocate for himself but saw him being more and more intimidated by this person at the DMV.


“Where is the line for when you advocate FOR them and when you let them advocate for themselves?” She asked.


It made me think.


And I realized this: Part of self-advocacy is knowing when to say “I CAN’T do this alone. I need someone to help me advocate for myself.” And that is okay. I’m 37 years old. And when the Chicago department of transportation was down my back because I had forgotten my Ipass on a work trip, I called my mom and said, “Help!” It’s okay to call your mom. Or whoever it is that you call for help. Knowing when you need help and how to ask for it is a huge part of self-advocacy skills.


It was a nice lesson for all of us.


Words DO make a difference!

Friday, January 4th, 2013

  

By Kim Nerone, Fundraiser/Special Events Coordinator

National Spinal Cord Injury Association – SE Wisconsin

 

Recently while watching a local news report on a family adopting a child from overseas, the reporter described the adopted child by saying, “This young girl is wheelchair bound.” ARGH! I wanted to scream – she is NOT wheelchair bound, she just happens to USE a wheelchair! I was more than a little offended. But this heightened awareness of “People First” Language was new to me.

 

As a member of Partners in Policymaking, a group of volunteer advocates working to improve the lives of people with disabilities, I recently heard a talk on the subject of People First Language. At first I must confess I thought it was just political correctness gone amuck – but the speaker explained People First Language is simply a more respectful and accurate way to speak. Acknowledging the person FIRST and NOT their condition or diagnosis really is just the Golden Rule – treating others the way you want to be treated! This struck me like a bolt of lightening! It made perfect sense to me. 

 

 Woman using wheelchair

“People First” language makes a difference.
 

The speaker shared how many times people get caught up in describing the diagnosis, aka, the disability. I started thinking about my son and his disabilities. I am ashamed to say that more times than I would care to admit, I have put my son’s diagnosis/disability ahead of him. Thinking of the many times I have done this still makes me tearful.

 

I can recall times, when speaking to a teacher, for example, when I would say, “Well, he has a hearing loss, he is apraxic and dyslexic and he can at times, be very difficult to understand. He has a lot of trouble listening to a lecture and taking notes at the same time, and handwriting? Oh, let’s not even go there.” It breaks my heart to think he has heard me say these hurtful words and may have internalized it as me, his mother, seeing him as less than what he is when in fact it was simply MY ignorance of People First Language. 

 

Now, what if while sitting with a teacher I would have simply started with his name? What a concept! Now what if instead of framing his diagnosis as a problem, I framed it in terms of “needs”? The conversation with a teacher might go something like this: “This is my son Hayden. Hayden will need to sit at the front of the class to be sure he hears everything you are saying. He will need your notes in written format so he can follow along as you lecture. He needs his textbooks on audio and uses a voice-activated computer program to write his compositions.” What a difference a few words make!

 

Mark Twain said it best when he said, “The difference between the right word and the almost right word is the difference between lightning and a lightning bug.”

 

 

For more information on People First language, visit:

http://www.thearc.org/page.aspx?pid=2523

 

http://www.directionservice.org/cadre/exemplar/artifacts/PA-264%20People-First-Language%20Publication.pdf

 

 

For those folks in the media who need an authority on People First language, here’s a great resource they should refer to…and often!

 

National Center on Disability and Journalism

http://ncdj.org/

 

 

Gift ideas for kids with disabilities

Tuesday, December 11th, 2012

By Alie Kriofske, Youth Leadership Specialist


We just decked the halls of the Independent Living Department here at IndependenceFirst and all of our staff are thinking about their holiday shopping.


As the youth leadership specialist, I wish I could  buy a Christmas or Hanukah or Kwanza gift for ALL the youth in my programs, but alas, instead I offer you a list of resources for holiday gifts for youth with several different types of disabilities.


Alie with Holiday Tree


At the Autism Speaks website, they have a list of toys and games good for children on the spectrum.

http://www.autismspeaks.org/family-services/resource-library/toys-games


Arthritis.org is home to another list of games and devices for children and youth with Juvenile Arthritis.
http://www.arthritis.org/media/JA/kGAT/KGAT_NovDec07.pdf


And filling the stockings of children with juvenile diabetes can be a challenge but the Parenting Diabetic Kids blog shares a list of good treats for diabetic children.

http://www.parentingdiabetickids.com/blog/cookies-and-candy-for-kids-with-diabetes/


And finally Sensory Processing Disorders in children can make gift giving difficult. Here is a website with gift suggestions for children with Autism, Asperger’s, ADHD and Dyslexia. http://www.sensoryprocessing.info/toys/gift-ideas.html


Happy Holidays from IndependenceFirst’s Youth Leadership Specialist and all of us here at IF. We hope this list can help you along in your holiday shopping for your loved one with a disability.


Keeping the Peace

Friday, November 16th, 2012

By Alie Kriofske, Youth Leadership Specialist 

 

Here it comes…

 

It’s on its way…

 

The holiday season. The time for carols and candles, gifts and gratitude, family gatherings and family…dynamics.

 

Yes, it is lovely to be with our families and home with our kids and to see our in-laws but this can also lead to conflicts.  Here at IndependenceFirst, we teach conflict resolution and anger management as an independent living skill, so in the name of the holidays, I thought I’d share with you a few tips from our family to yours on conflict.

 

The Do’s and Don’ts of Fighting Fair

 

DO: Calm down before you talk with the person you are having a conflict with.                            

DON’T: Talk when you’re really angry.

 

DO: Pay attention when someone is telling you how they feel.            

DON’T: Say “I don’t want to hear this.”

 

DO: Use “I” Statements.                                                                           

DON’T: Say “YOU did …” or “YOU are…”

 

DO: Keep a calm tone of voice and listen really well.                           

DON’T: Wait until you are so mad that you blow up.

 
youth learn about peaceful conflict resolution
Youth at Leadership Summit
Learn About Conflict Resolution
 

DO: Stick to the issue. Talk about what is bothering you.                   

DON’T: Bring up old fights.

 

DO: Avoid blaming. Focus on fixing the problem.                                

DON’T: Use words like “always” or “never.”

 

DO: Be honest with yourself and the other person.     

DON’T: Hit anyone or anything.       

 

 

Deaf and hard of hearing students face additional challenges

Thursday, November 8th, 2012

By Eve Eiseman, retired marriage and family therapist for the Deaf and hard of hearing

 

The article in the link below is about the need for counseling for Deaf and hard of hearing students. It stresses the need for counseling because of the various factors in their lives that have the potential to exacerbate the effects of isolation and lack of social interaction often found in mainstreamed programs.

 

girl talking to counselor

 

It also emphasizes the need to pay attention to communication, attitudinal and physical barriers for these students. The implications of living with a hearing loss, in addition to the emotional and developmental issues that are present for every student, should be a ‘wake up call’ for those who provide counseling services at a college level.

 

http://pepnet.org/sites/default/files/66PEPNet Tipsheet – Counseling Services for students who are deaf and hard of hearing.pdf

 

Information shared by Denise Johnson, Wisconsin Statewide Project Alcohol and Other Drug Abuse Service for the Deaf, Hard of Hearing and DeafBlind  For more information contact Denise Johnson at djohnson@independencefirst.org.

 

 

Just ask!

Thursday, October 25th, 2012

By Kim Nerone, Fundraiser/Special Events Coordinator for National Spinal Cord Injury Association of SE Wisconsin


My dear friend has three children, a five-year-old, a seven-year-old and a 13-year-old. The two youngest both have bicycles they ride all the time. The 13-year-old has Down Syndrome and due to her disability is unable to ride the same kind of bike as her siblings. As her brother and sister rode up and down the street with the wind blowing in their hair, she sat on the porch dreaming of the day when she could do the same.


This summer the family went on a camping trip and the campground had a recumbent bike for rent. Due to its configuration and low center of gravity, she gave it a try and lo and behold she was riding a bike! The smile on her face says it all!


 smiling girl on recumbent bike


Seeing her happiness riding the bike, I was bound and determined to find a way to get this child a bike. A quick call to the campground revealed the price tag of $1500.00 was clearly out of reach. I called some local bike shops who said they do not carry such a specialized bike. Feeling a bit discouraged, I decided I would ask someone at IndependenceFirst.


I asked Kathy Mohar, the Wheelchair Sports and Adaptive Recreation Coordinator, if she had any ideas. Without hesitation, Kathy said she had the answer! She told me all about Variety Children’s Charity, a non-profit agency whose mission is to help children with disabilities obtain confidence, freedom and independence by, among other things, providing children in need with bicycles! After a quick phone call to Variety, an application was obtained and the process was under way.


Recently, I received a phone call that all but brought me to tears, “Kimmy guess what? I’m getting a bike!”


The grant for a customized bike had been approved. Staff at Emory’s Bike Shop in Milwaukee assessed her abilities and took measurements. In approximately six to eight weeks, a new, fully customized bike arrived! Now, instead of sitting back wishing she could be a part of all the fun, she is able to fully engage in all the fun of riding a bike!


girl on adapted bike


The lesson I learned is: when you need something, just ask, and keep asking until you find someone who can help you.


THANK YOU to Kathy Mohar at IndependenceFirst for the great information and referral and to Variety Children’s Charity and Emory’s for helping to make sure this smile was not just a one time thing, but something that will happen again and again every time she pulls out her new bike!


For more information on the IndependenceFirst Wheelchair Sports and Adaptive Recreation program (including the Biking Buddies program), contact Kathy Mohar at (414) 226-8375 V/Relay. For more information on Variety Children’s Charity, visit http://www.varietywi.org/.



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