web analytics

Fears and Raising Children with Special Needs

October 26, 2011 in Featured, From Julia by Julia Roberts

When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.

We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.

During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.

Some fears that I and other community members have…

  • -          Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us are  discussing  special needs trusts before our kids are five.
    -          Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
    -          Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
    -          Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
    -          Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in new  groups of people, sleepovers. Acceptance.
    -          Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
    -          Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t “perfect” and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
    -          Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.

Community member, Michelle Howard said, “I hate the word fear. It has too much power over people.” While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.

I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.

Originally published in January 2011

Rody Learns Independence

November 11, 2010 in Giveaways by Julia Roberts

As part of our Week Before The Week of the Great Big Wish List Giveaway we’re giving away two Rodys EVERY SINGLE DAY THIS WEEK!

This week’s giveaways are the only giveaways open to non-members!

Rody is leaving home to make his way in the wide, wide world

Each day this week we’re giving TWO Rody Hop-A-Long toys from Gymnic! We want to get the word out about some of our great forums and so we’re letting Rody (and his friend, our site mascot Quinn) introduce you. And today we have a special guest! Mara Kaplan from Let Kids Play is hosting this giveaway! Mara also runs the Accessible Playground web site. You will find tons of fantastic resources on how you can develop an accessible playground in YOUR community.  You’ll find inspiring examples of what other folks have done and Mara can help you find the accessible playgrounds in your community.

For the past few years Mara has celebrated the upcoming holidays by hosting fantastic, in-depth toy reviews for the ENTIRE month of November on the Let Kids Play blog. This is a MUST-SEE resource for any family raising a child with special needs. Says Mara:

I am an educator, a parent of a child with multi-disabilities, and a seasoned advocate for inclusive. I believe that ALL children should play! Unstructured, creative and imaginative play. Working on strengths not weaknesses. I will be sharing ideas about playgrounds, toys, disabilities, and my own personal story.

Mara’s son is seventeen now so she wanted to highlight our Adulthood, Independence & Special Needs group.

The front page of all our groups is a place for quick updates and to see what’s going on. It’s a little like a Facebook wall. Someone can post an announcement and other people can reply. But it’s not as handy for in-depth discussion as a messageboard, which is why all of our groups also host a forum. Here’s a direct link to the Adulthood, Independence & Special Needs Forum

You can also see the event calendar, which is a great place to post workshops, webinars or livechats you want your fellow Adulthood, Independence & Special Needs members to know about.

Want to meet the other members? Here’s the roster!

You can upload documents to the group, too, like a great hand-out a teacher has shared with you or a flyer you think might interest others in the group.

Finally, like every group, the Adulthood, Independence & Special Needs group has its own livechat! You are welcome to use this anytime. You can schedule a chat (remember to post it to the event calendar!) or spontaneously check in if you realize other people are around.

Now here’s how to win a Gymnic Rody!

Rody is a fantastic Italian toy that a lot of therapists use for trunk work, balance, strength and fun. You can read more about what makes him so amazing at Mara’s web site and checking out her gross motor toy reviews.

The Rodys we’re giving away are all the pretty peach with red spots you see in the picture at the top of the entry and here’s how YOU can win him!

  • • First of all, have you already commented on a previous post? Then lucky you! Anyone who has already commented on a post from earlier in the week gets an automatic RE-ENTRY in every single subsequent Rody giveaway this week! That’s right, we’re rolling your entries over! (We decided to do this after consulting with some of our members and they said YES! DO THAT!)
  • Comment on this post! Commenting on this post lets us know that you want in on today’s Rody drawing!
  • Tweet this tweet (we’ll be tracking them so you can just copy and paste this):
  • I want to win a Rody! http://bit.ly/wish-list-giveaway #wishlistgiveaway
  • Blog it! If you have a blog, write a post about our Great Big Wish List Giveaway and link is up
  • Be a member! Members get an additional entry!
  • Answer this question at the forum!

After this week the giveaways are only open to members. That means if you want to enter to win an American Girl Doll, a light up Ferris Wheel from K’Nex, a set of six adorable Audubon birds beanies from Wild Republic or one of the other 70+ toys and gifts we’re giving away, you’ll need to be a member! Why not become one today and get ahead of the curve?

Community, Inside and Out

September 15, 2010 in From Julia by Julia Roberts

Quinn playingWe’ve been really busy here at the site. It’s wonderful to see new members, new groups, new connections and support throughout the site. It’s what we envisioned when we talked about this little idea to build a community for parents of children with special needs.

What I’m particularly excited about is that there are new members with adult children with special needs. Some came from the site Family Support Clearing House – a fantastic organization who we are partnering with to bring their community a forum as they change how they do things. I know for me, I tend to only think about the day-to-day life of kids under teens years. What keeps me up if I can’t sleep, is the thought about my kids’ futures and how best to help them be a productive (and happy!) member of mainstream society. Our new group, Adulthood, Independence and Special Needs will allow these discussions to happen and I’m eternally grateful for the parents on the group already who’ve shared their stories about their adult children.

As part of outreach, both in the mainstream blogging world and to other parents of kids with special needs, I had the pleasure of attending BlogHer. In less than two weeks I’m going to the Type-A Mom conference and excited to be part of a smaller gathering of bloggers and site owners.

I’m looking forward to learning new ways to reach other people about the site – in particular parents and professionals. At only a little over 4 months old, we’re thrilled at the growth we’ve achieved in such a short time – thank you for making it possible! It is because you are here that we are motivated to do more and do it better. If you have any questions about navigation or ideas about what else you’d like to see on the site, please let us know!

Recently I was asked to join a Parent Advisory Council for Children’s Healthcare of Atlanta and work as part of a small group of moms who get to bring ideas and offer feedback on all there is to patient experience. Being a part of this group was born out of an observation I made on twitter about how families who come in for clinic and treatments all the time didn’t get the same privileges as kids who are in-patient (like a 25% discount at the store and cafeteria, which isn’t a big deal for ONE visit, but if you are there over 200 times over the life of childhood kidney care and follow up, it means something) and they contacted me about the issue and also asked if I’d be interested in being on a newly formed council. Yes! I said and so here I am. Feeling like I am a part of something bigger. It makes this crazy special needs road I am on a little better I think when I can step outside of my own sadness and fear (and exhaustion). Please let us know of ways you serve your community to give others ideas about how to get involved to make a positive impact, we’d love to share it!

Through the PKD Foundation, for which I volunteer, I was able to have a chance to talk to nephrologists at an annual association meeting about the parent experience in raising two kids with ARPKD – the disease my kids have. It was rewarding but also very empowering. I think it’s important to talk about the quality of life on the inside of special needs parenting to a large group of people on the outside. While I know doctors know some about our lives, I was happy to share what it meant to me to hear these words when my daughter was just a few days old, “With kids like these, take them home and love them as long as you have them.”  Tell us how you’ve been able to share your story outside our demographic (of other special needs parents), we’d love to hear about it and share it with our members.

I’ve loved being here with you all and I appreciate your willingness to share your stories with me and with others. Through my kids’ kidney failure, dialysis, transplant, educational issues and emotional fallout it is so good for me to know that others are there and share the same journey. While you may not deal with these specific conditions/treatments, I know you understand sadness, fear, stress, financial strain, and what it means to be a parent of kids with special needs.

And I don’t feel so alone. So thank you.

Grant helps further research on autism in adulthood

July 22, 2010 in Special Needs News by Admin Dawn

Families with autistic children who participated in a 1980s U study have allowed researchers to focus on adults with autism through the Autism Speaks grant.

The $450,000 grant will permit researchers to follow up with 241 autistic adults who were studied 25 years ago as children by U and UCLA researchers. Their goal is to catch a glimpse of the individuals over time to better understand autism in adulthood.

Not much is known about the effects of autism in adulthood, including necessary support services, as well as struggles with employment and social interaction.

“What’s needed is a large, population-based sample to better understand the issue,” said William McMahon, professor and chairman of the U School of Medicine’s department of psychiatry. “With the Autism Speaks grant, we can start to provide more information for this area of need.”

read more at The Daily Utah Chronicle – Grant helps further research on autism in adulthood.

Parents and caregivers of youth with disabilities asked to take part in national survey

July 12, 2010 in Special Needs News by Admin Dawn

Parents or primary caregivers of young people with disabilities between 12 and 22 years old are invited take part in a national research study by completing the National Family Support Survey at www.fastfamilysupport.org by August 13, 2010.

Answers to the survey questions are confidential and will help the U.S. Administration on Developmental Disabilities, parent centers, and researchers understand the information and supports families need as young people with disabilities move into adulthood. The survey is available in English and Spanish.

via Parents and caregivers of youth with disabilities asked to take part in national survey | Alexandria Echo Press | Alexandria, Minnesota.

What comes around: Friendship Circle of Michigan

June 24, 2010 in Featured Organization, Latest Articles by Admin Dawn

One of the best things about being a part of this site is getting to meet people and organizations who are doing amazing things for kids with special needs and their families. Recently we became aware of The Friendship Circle in Michigan thanks to Facebook friends who linked us to their video, That Annoying Kid, which we shared here. We spoke with Bassie Shemtov, founder and director of the program via email. (By the way, you can follow her Twitter here and on Facebook here!)

The Friendship Circle offers several programs within their Ferber Kaufman LifeTown facility. The Friendship Circle has been operating since 1994 and has inspired other circles around the country. Funded primarily through private donations, The Friendship Circle recently received a $1,000,000 federal grant to create a play-therapy and anti-bullying program.

How many children are served through your program?

Overall, we have served 3,000 families with special needs. This past year, we have served over 155 schools from 42 school districts in Metro Detroit.

How are kids screened into the program?

Each family meets with our “family coordinator” to tour our facility and learn about the programs. All children are accepted into the program, so the only “screening” performed is which programs would address their particular needs the best. For example, we have children with severe Autism and we have children that are simply socially awkward. If they have any special need, we are here for them. We accept all families who feel they can benefit from our organization, no questions asked. All of our programs are infused with play therapy, social and physical therapy. So although the child is “having fun with their buddy,” they are also cultivating life skills to work on their particular needs.

Do they graduate from the program?

We have programs for young children all the way through adulthood. Therefore, most of our kids never graduate. They grow with us. Friendship Circle is more like a community, rather than a temporary institution.

How are volunteers recruited?

Most of volunteers arrive at our doors from word of mouth. They hear about their friend’s volunteer work and want to get involved. In our early years, we went straight to the local high schools for direct recruiting. Many teens need service hours fulfilled for graduation, Bar/Bat mitzvahs, etc. But as more and more requests for volunteering opportunities came in, we began to realize that these teens were gaining much more than just service hours. They were learning life lessons from their special friends such as non-judgment, unconditional love and patience. These morale-boosting lessons are what really keep our volunteers coming through the door. Their special friends don’t care what clothes their teen is wearing. They don’t care if their teen is popular or not. It’s a unique, deeply personal experience that changes their life for the better.

How do you help build other friendship circles around the country?

As the founding branch of now 80 locations worldwide, we are the test-pilot for many of the new programs. Basically, we brainstorm new programs, campaigns, events, etc. We try them out here, develop the tools needed to execute them and if it is a success…we share them with the other FC’s. Each year, we have a Friendship Circle International conference where the 80 locations gather for a 3 day round-table style retreat. We all bring new ideas to the table and distribute the information to all. (Note: To see if there is a Friendship Circle near you, check the web site here.)

What was your impetus for starting the program?

My husband and I moved to Michigan in 1994. We originally began Friendship Circle to serve individuals struggling with addiction, isolation and other family related crises. Our method was to take individuals who were already in active pursuit of recovery and help reintegrate them into society through life skill training such as job searching, spiritual guidance, counseling, 12 step meetings, etc.

During our first few months in the Metro Detroit community, we noticed an overwhelming need for community inclusion for individuals with special needs as well. Families with special needs were another group, pushed onto the fringes of society and excluded from many community events/programs. And although they had access to doctors and therapies, they were facing social segregation from a community lacking education about their neighbors with special needs. So we simply began coordinating teens to visit the homes of children with special needs for one hour per week. The child would receive a friend to play with and the family would receive much needed respite.

The idea caught on like wildfire and 16 years later, we have a 28,000 square foot facility. Inside our facility is a 5,000 square foot life-like village with eight storefronts, a park and working intersections. Inside “Weinberg Village” as it’s called, we teach 155 local schools various life-skills in a safe environment, tailored to their special needs. Eventually, our addiction support services thrived and branched out to form The Daniel B. Sobel Friendship House.

%d bloggers like this: