Support In The Similarities

boysWe raise our children with special needs in a world where we advocate for inclusion daily. We work for school environments to support inclusion, we attend churches, play groups, birthday parties, and other social engagements where our child with special needs has typically developing peers. We strive to make sure their lives are as similar as their peers as possible. But should we also make sure our children with special needs have relationships with peers with special needs?

As the mother of a child with Down syndrome it’s important to me that my son grows up in an inclusive environment where he can learn from and teach his typically developing peers, however, it is also important to me that he develops friendships with people who share his diagosis.

More Alike

Just as I need friends who walk this journey to support me because they understand things others moms don’t, my son will need support some day from those who understand even that which I can’t. I can tell you what it’s like to raise a child with Down syndrome, but I cannot know what it’s truly like to have Down syndrome.

Jenn Scott, whose son has Down syndrome, agrees. “It’s important for Sean so he knows he’s not alone in his challenges and much like our relationships as moms, he’s got people who just get it without him having to make them understand.”

More Different

But not everyone shares this view. Beth Goodman does not think that her son Joseph, who has Down syndrome, necessarily needs to have friends with Down syndrome.”He’s not going to spend the majority of his life with other individuals who have it, so it’s not necessarily a reliable way to find friends for him,” she says. “However, I, as his mother, need friends whose kids have Down syndrome. I need a sounding board of people who get it without me having to explain it.”

The Best of Both Worlds

Carol Cranford, program specialist for the Family Support Network of Southern Piedmont, says that children  with special needs are just like everybody else when it comes to choosing friends. “Most of us connect best and feel most comfortable with people who have the similar interest as we do.  We become friends with people we like and who like us back.  I think it’s the same with children with special needs.  It’s important for kids with special needs to have opportunities to make friends with kids special needs and kids who are typically developing.”

Maureen Rich Wallace has three children under the age of five, her oldest, Charlie, has Down syndrome. She values a balance of both worlds. “I absolutely want Charlie to have friends who are peers and friends who are neurotypical.” Wallace desires a diverse environment for all over her children including ethnicity, gender, culture, and more. “I think it’s important because as he gets older and understands that he has Down syndrome, I want him to have peers who can relate and support each other.”

The Siblings

Goodman does feel like it is helpful for her other son, Buddy, to have friends with Down syndrome. “It helps him to see that not all kids are like him, that some are like his brother, making it easier for him to accept the fact that when we have to do things differently for Joseph, there’s a reason, and there’s nothing wrong with that.”

Carol Cranford oversees workshops for siblings of children with special needs. “Siblings of kids with special needs often feel that they are alone. They feel neglected by their parents because their brother or sister requires so much attention.  Siblings take on care-giving responsibilities for their brother or sister at an early age and are often more mature than their peers.  They need an opportunity to share the ups and downs of having a brother or sister with special needs with peers who can relate.” She says that Sibshops gives siblings a chance to see that other families are just as wacky as their own and they can learn to see humor in their situation. “Connecting with other siblings of kids with special needs can be life changing, from embarrassment and anger to advocate and leader.”

Support in the Similarities

At the end of the day what we want for our children is to be valued and accepted. We want them to have friends and relationship that will support them. Different families will find this in different ways.

Jill Wagoner is Secretary of the Board of Directors at Partners In Learning and the parent of a son with Down syndrome.

Jill Wagoner is Secretary of the Board of Directors at Partners In Learning and the parent of a son with Down syndrome.

 

Jill Wagoner is the mother of a child with Down syndrome. She serves as an advocate, writer, speaker, fundraiser, and grant writer for organizations that support children with special needs. A former journalist and current marketer and public relations specialist, Jill has been published in many publications and blogs, including The Salisbury Post, Salisbury Life MagazineModern Parent, and Rowan Magazine.

 

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Special Needs Mini Conference

mini conference

Susan King, author of Optimism for Autism, will be returning to Partner’s In Learning’s Special Needs Mini-Conference as keynote speaker on May 3rd for an encore presentation. She is a wife and mother of four adult children and she will be sharing her journey as the mother of a young man with Autism. She will talk about the challenges and joys of raising a child with Autism.

The conference is a free event for both parents and teachers; child care credit will be given to teachers needing continuing education hours. The Arc of Rowan will provide free child care at Partners In Learning to participants attending the conference. This annual event is a wonderful networking opportunity for the early education and special needs community in our area. Local agencies will be available throughout the conference to share and discuss the services that they provide for individuals, families, professionals, and members of the community.

optimism for autismThis year’s breakout sessions promise to be captivating and will inspire parents and professionals with ideas and hope! You will leave the mini-conference ready to try (and make) new things, with knowledge on your child’s development, and excited to not only be your child’s parent, but their number one advocate!

Participants will be able to attend two breakout sessions. Topics included are (1) use Pinterest to boost your child’s development; (2) hear from parents who have been there and done that and who are willing to share their journeys; (3) making shoe box activities; (4) how to make, or find cheaply, toys and tools that encourage fine motor skills and sensory play; (5) learn from and put yourself in the shoes of a retired Rowan County schools special education teacher; (6) how to have a passion for advocacy; and (7) discipline tips and how to determine triggers of behavioral problems in order to intervene and correct behavior in children with and without special needs.

If any of these topics sounds interesting to you or if you wish to network with the early education and special needs community in our area, please join us for our Special Needs Mini-Conference. The conference will be held in the Ketner building on Catawba College’s campus on May 3rd, 2014. Registration begins at 8:00 a.m. If you need childcare, please drop your child off at Partners In Learning before arriving at Ketner for registration. For more information and to sign up for the mini-conference, please call Partners In Learning at (704) 639-9020. We look forward to seeing you there!

Katie Zink, Infant-Toddler Family Specialist

Katie Zink, Infant-Toddler Family Specialist

 

 

Katie Zink is a graduate of Catawba College and serves as a CBRS therapist for Partners In Learning. Prior to her role as a therapist, Katie served as a teacher beginning in 2009.  Working with children is her life’s passion.

Pledge With Us

“I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.” (source: www.r-word.org)

This is my personal pledge to help our community end the R-word. The R-word is derogatory and offensive to not only people with disabilities, but also to people who advocate for the rights of and respect for every person. The R-word that I am speaking of is the word ‘retard(ed)’.

This word has become a common one used to provoke a laugh among friends or as a synonym for dumb or silly, and worst of all it is used out of disregard for another’s feelings.  It is far easier to continue to use this word in your everyday vocabulary than to dismiss it, but maybe for just the few moments that you spend reading this blog, think about what it would be like if such degrading words didn’t exist in our language. To a person who is aware of the dehumanizing power that this word as well as various ethnic slurs can produce, there is no more devastating disability than ignorance.

Following this blog, you will hopefully decide to eliminate the use of the R-word in your vocabulary, but that is only one part of the pledge that we, as a community, need to be making. We need to come together to not only accept everyone for who they are, but also to encourage them to be involved in education, community events, daily living activities, etc. Using the R-word is just as exclusive as not allowing people with special needs to participate in their community. People with disabilities deserve to be respected and valued in society in the same way that we appreciate the diversity in our communities today.

At Partners In Learning, we make inclusion a priority with children who have special needs and developmental delays. Each child who attends our program is treated equally and they each have the same opportunities as their peers do. The children learn in a “regular education” classroom and the teachers have both the training and support necessary to teach each child in their care. Teachers also take advantage of special teaching moments that involve instilling positive character traits in their students.  Not only is this method of including children with special needs good for the children with disabilities, but their typically developing peers are also learning from an early age how to be accepting and respectful to everyone, regardless of any differences they may have.

Please take a moment at the end of this blog to make the same pledge that I have, of eliminating the use of the R-word in your personal everyday speech as well as helping to spread the word to end the word. You can publicly pledge at www.r-word.org.

Katie Zink, Infant-Toddler Family Specialist

Katie Zink, Infant-Toddler Family Specialist

 

Katie Zink is a graduate of Catawba College and serves as a CBRS therapist for Partners In Learning. Prior to her role as a therapist, Katie served as a teacher beginning in 2009.  Working with children is her life’s passion.

 

Halloween For and With Children With Special Needs

As Halloween approaches many parents are in the spirit preparing costumes and treats and getting ready for parties and trick-or-treating. But for parents of children with special needs, there is often more than your average preparation.

How does a child with sensory issues handle a costume or the noise of a busy neighborhood? How does a child in a wheel chair navigate stairs up to a house and what costume will work best in a wheel chair? How does a child with limited verbal skills communicate “Trick-or-treat” and “Thank you?” These and other thoughts go into the preparation of Halloween for parents with children with a disability.

As a household who receives trick-or-treaters it’s always a good reminder that the child who is grasping in the bowl may not be greedy, but may just have delayed fine motor skills and be struggling to take just one piece. The child who does not say thank you may not have poor manners, but may just be nonverbal. A child who might seem agitated may not have missed his or her nap, but might be experiencing sensory over load. So we’ve included some advice for you as well.

Preparing
Norma Honeycutt, executive director for Partners In Learning, says that visuals are great ways to start talking with your child about Halloween.  This will help to make the traditions of the evening more familiar and the evening itself less scary for the child.  She suggests Halloween books and social stories.

The Costume
Dr. Ashley Deaton, occupational therapist and co-owner of One Step At A Time Therapy Services, says that many kids with special needs cannot handle wearing a mask or a costume that is tight fitting around the neck.  She says costumes that velcro shut and don’t require a mask or hood often work best.

For children who are less mobile, incorporate a child’s wagon or stroller into the costume. “Make the wheelchair look like a boat and the child dressing as a sailor or mermaid,” says Deaton.

Honeycutt reminds parents that, especially for young children, scary costumes for Halloween can feel very real. She suggests taking your child to a store and letting them look at all the costumes. “Show them scary costumes while they are not on.  The worst thing that parents can do, that I so often see, is scare their child by putting on scary mask and laughing.  Remember, that this is all new to them and their fear is real.”

Jenn Scott, who has a son with Down syndrome, shares that he does not like hats or masks. This Halloween he will be wearing skeleton pajamas with nothing on his head and a skeleton sweatshirt in case it’s cold.

Lindsy Maners says her son who has Down syndrome was fine with a costume last year, but this year he’s been having more sensory issues with clothes. “He wanted to be Spider-Man, but once he tried it on, he was very upset. So we opted for a football player, which is made up of all of his own clothes. Comfort and happiness and much more important.”

For children with sensory issues:

  • Avoid hoods or hats
  • Avoid or remove tags
  • Avoid stratchy costumes
  • Keep the wasteband loose
  • Make a costume out of the child’s own clothing
  • Make a costume out of sweat pant material
The Route
Deaton advises to avoid random houses.  “Lots of people take the scare factor of Halloween very seriously and it can be traumatic for some kids to be scared like that,” she says. “Going to houses of family and friends and going to community trick-or-treat events such as the mall or downtown shops would be much safer.”
Communication
There are lots of options for children who are non or semi verbal to communicate phrases like “trick-or-treat” and “thank you.”
  • Use a greeting card that allows you to record a message. With some Halloween paper and decorations to cover the original card contents, you can help the child record their “Trick-or-treat” message and then practice having them go up to the door and open the card when someone answers so that they can join in on the Halloween fun.
  • Make written cards with phrases and put them on popsicle sticks or small rods. Allow the child to decorate them with festive colors and stickers. There are also ones you can download.
  • Teach the child the signs for the phrases.
Advice to the trick-or-treat receiver
“The best advise for the people receiving trick-or-treaters is  to not judge children’s behavior,” says Honeycutt.
“For people receiving trick or treaters I’d suggest buying nonfood treats to give in case a child comes to the door who doesn’t eat by mouth, can’t have candy, or is allergic,” says Deaton. She suggests a small coloring book/crayon combo from the Dollar Store. “You don’t have to worry about a choking hazard and they can practice their fine motor skills.” She said small stuffed animals or small balls are also good options.
Toni Robinson who works as an advocate for children with special needs adds, “If someone can’t understand what a child says or means or needs, just say, ‘I am sorry, I don’t understand, but I want to. Would you (to the child or the adult traveling with) be willing to help me understand?’”
When trick-or-treating just doesn’t work
For some children, even with accomodations, trick-or-treating just isn’t fun. When that is the case, consider staying home and allowing them to pass out the candy.

“For our son, who experienced major discomfort with costumes of all kinds, was terrified of clowns, yet loved the idea of Halloween and giving treats, we listened to those preferences and allowed him to be a welcomer and treat distributor,” says Robinson, whose son is 30 and has special needs. “To this day, he still enjoys doing that and looks forward to Halloween. To this day, he has huge appreciation for all holidays and continues to invite us to notice reasons to celebrate day in and day out.”

Beth Goodman agrees, “We decorate the house with non-scary things, read books about dressing up.” She says her son, who has Down syndrome, doesn’t care to stay in a costume and he doesn’t eat candy. “So his job is to sit by me in the driveway, fire pit going, and pass out candy. We have to buy a lot because he’s generous with his handouts.”

Jill Wagoner is Secretary of the Board of Directors at Partners In Learning and the parent of a son with Down syndrome.

 

Jill Wagoner is the mother of a child with Down syndrome. She serves as an advocate, writer, speaker, fundraiser, and grant writer for organizations that support children with special needs. A former journalist and current marketer and public relations specialist, Jill has been published in many publications and blogs, including The Salisbury PostModern Parent, and Rowan Magazine.

Support Groups for Families of Children with Special Needs

Did you know that Partners In Learning offers Support Groups to parents and professionals in the community?

Imagine being able to meet face-to-face with people each month that are experiencing similar issues as you. Our support groups encourage you to meet new people and share advice with your peers. You have the opportunity to discuss how your children are coping with their latest challenges and offer solutions to others that have worked for you in the past. Wouldn’t it be helpful to share strategies for coping with the public school system and other legal situations? Knowing that you are not alone can be just as helpful as the information that we provide during each meeting.

For each month’s meeting, we provide either a speaker or a specific topic. Our most recent meeting involved the use of technology by children with special needs. We learned how to pick out age-appropriate applications, such as for your iPad or phone. Professionals shared their favorite Apps and we discussed the consequences that may arise from the use of technology with young children.

Other past meetings have involved a Disability Rights speaker discussing the legal rights of children with special needs. We usually have seasonal themed meetings, such as a Christmas dinner and visit with Santa as well as our annual trip to Patterson Farm’s strawberry patch.

Not only will these meetings allow you to feel less isolated, but you will gain a sense of empowerment and knowledge. You will feel more comfortable when coping with situations that involve your child with special needs. Through open, honest discussion, you will come to better understand what to expect from specific situations. And best of all, you will get useful advice while making new friends that can serve as support for your family.

We specifically offer Autism and Down Syndrome Support Groups, but any parent of a child with special needs is welcome to attend our events. Our support groups for families of children with special needs meet monthly, typically at Partners In Learning’s resource room. Most of the meetings include free dinner and childcare. Professional babysitters and our own teachers provide childcare for children whose parents are attending the meeting.

Partners In Learning always encourages parents and professionals to attend our support group meetings and workshops. Please call ahead to reserve your spot at one of our meetings and follow us online for upcoming events.

Katie Zink, Infant-Toddler Family Specialist

 

Katie Zink is a graduate of Catawba College and serves as a CBRS therapist for Partners In Learning. Prior to her role as a therapist, Katie served as a teacher beginning in 2009.  Working with children is her life’s passion.