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by Julia Roberts

Around the Community

October 28, 2011 in Featured, From Julia by Julia Roberts

Halloween Monday? Who thought October flew by?

I don’t usually say time passes quickly but it did this month. What is that saying…the days are long the years (or months) are short? We’ll be writing about New Year’s Day before you know it.

We’re in full swing here and have some great things on the horizon. For example, starting on November 10th, Jen Lee Reeves of Born Just Right. She was so enthusiastic to do something here, we thought this doing our Friday wrap ups would be a great way to jump in! Welcome her! You can find her on Twitter at JenLeeReeves. Thanks Jen!

New Members!

Lindsey - her little boy has the same disease my kids have and so I hope I can personally offer her support as they move to kidney transplant. Very exciting times. Welcome Lindsey!

Rob – he came over here from to read and comment on the recent Silo post about working together in the larger disability community. Thanks for your comments.

Alicia – also came over as a result of the Silo post…Alicia, I appreciate your comments as well. Please click on her page and her blog and go get to know her. I am.

Paula – married mom to a teenager waiting for a liver transplant. I hope we can learn from each other. While I’ve been through the transplant journey (with kidneys) we’ll also be working the liver transplant system as well. Welcome Paula!

Don’t Miss Topics & Groups!

School  and IEP Groups...IEP Discussions is one of them, be sure to check in if you have questions about an IEP or are needing support about one of those meetings you  might have coming up.

Community member Jen Troester let me take an off-line discussion in email and put it in a topic. It’s about changes to her daughter’s IEP but Jen is struggling with the idea of pulling out for lunch because that removes some social interactions she can use…weigh in!

 

Also a new group for 504 ADA and Parenting the Special Needs College Student has started so go and join it if you have an interest in information about college and disabilities.

Adults…happy to say we also have a fairly new group for College Students & Adults with Disabilities started by self advocate Erin Breedlove (@erinrbreedlove" href="http://twitter.com/erinrbreedlove" target="_blank">@erinrbreedlove), go and join that group because Erin is terrific and open and welcoming. Get to know her!

Groups for Fun…Scrapbooking is under that category. Be sure to join and check out group owner Siobhan’s tips and tricks. She’s a photography and Creative Memories rep, in case you need any supplies. She also makes some great books and she is great at helping people stay focused (namely, me).

Stressed? So, I’m  headed over to our Caregiver Stress group. Come and talk about it. Also, there’s a private group you need to ask to join that is Room for Rants. Join and share what is getting under your skin.

Community member Andy’s son is facing eye surgery on November 1st…been through it with yourself or your child? Go offer support in the Visual Impairment Group.

How to Get Around on the Site!

The best, quickest way to see what is going on is to visit the Latest Activity Stream, which you can click on in the bar on the top of the site. You can also check out Our Forums, which also can be found on the top bar. And of course, in the center of the site on the home page you will see what current topics are being visited.

How To…Wondering how to do something? Here’s a list of How To topics for you presented in a simple way.

We hope your weekend is off to a great start. If it is, share with someone who could use some support in the groups, and if your weekend isn’t off to a great start, share the struggles. It’s always better to know someone is in the same boat, right?

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Avatar of Julia Roberts

by Julia Roberts

When an ER visit turns into a stay.

September 28, 2011 in Community Wisdom, Featured, From Julia by Julia Roberts

Community member Courtney had a recent stay in the hospital with her new daughter. Her daughter is 3 and came to their family with complex medical needs. She is a wonderful mother of other kiddos with needs, but not many with the complex medical needs variety.

She’d not ended up in the ER with an emergent admittance. She was just like I used to be; the hopeful parent who ended up in the ER. In our case, I, with my pre transplant dehydrated child (on more than one occasion) without the necessities as well as the extra comforts of home.

On a particularly spectacular visit to the ER with absolutely no planning was exactly the last time I went to the ER unprepared. In fact, since then I probably over prepare.

The kids were younger, pre kidney transplant, and post healthy. A simple virus could land them in the ER for fluids and this time it did. Kid number 1 was just a visit, fluids, then we were home. A week or so later the other one was sick and ended up in the ER. This time, no fluids, but a quick admittance. The husband was out of town, a friend was at our house watching child #1 and there I was in the hospital with nothing but my purse.

The nurses gave me sheets, towels and a toothbrush and toothpaste and I found myself going to sleep after 2am. A couple of hours later as my daughter was peacefully sleeping with IV fluids (finally) I got sick. I finally succumbed to the evil illness that had hit the children. Sorry, but to illustrate my point, I had serious stomach issues. It was not pretty. Remember how I had nothing with me? Even worse when you are sick with stomach issues.

So now, I over prepare. In fact, I keep a list in my closet to remind me what to grab when I’m in a hurry and can’t think straight. I can usually pack in five minutes and it saves a lot of drama having to have family and friends bring me things from home. This is on my list…

- Whichever kid’s meds (and a written list, which you should have anyway to hand over)

- Stuffed animal

- Snacks and juice (if they can, I feed the kids on the way because they can’t eat usually once in the queue)

- Computer/charger

- Cell phone/charger

- Tooth brushes/tooth paste

- Moisturizer

- Shampoo

- Sweatpants/shirt to sleep in (for me)

- One set of clothing for each of us

- Notebook (for questions/information from doctors)

- Records? (I used to bring these, I don’t need to anymore since they are followed closely at the same hospital)

One of the most important things to bring with you? Your patience. Hospital time is an Alternate Universe. If they say 15 minutes, they mean 45, if they say you might get out the next day, do not count on it. If they tell you a test or treatment will be happening at a certain time, it’ll probably be worth your while to lower your expectations about when that will really occur.

There, I said it. Lower expectations. Not on care or anything serious, but mostly just time. Like I said, in the Alternate Universe, Hospital Time is completely different. It will help to embrace this concept.

What do you bring that I’ve not included here? Fess up? What’s your hospital trip item you don’t want to be without?

 

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Avatar of Kate Canterbury

by Kate Canterbury

Yes, I’m a Special Needs Parent

September 21, 2011 in Community Wisdom, Featured by Kate Canterbury

This is part of a new series of posts called “Yes, I am A Special Needs Parent” from special needs parents of all stripes. The idea for it was born after special needs parents came together at BlogHer  for a mini conference. It’s meant to illuminate the different experiences that parents of special needs kids have and the struggles and joys we face. If you are interested in being part of the monthly series, please email Kate Canterbury at theguavaliciouslife at gmail dot com.

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Shane Johnson is a full-time Technician at the Radical Child Development Center/stay-at-home parent, play games well, drinks coffee out of a sippy, and has recently moved to Columbia, Missouri. He blogs about his being a newcomer to Columbia at The COMO Collective. He enjoys correspondence with like-minded parents.

 

 

Waiting for Technology to Catch Up With Kaveh

Our son Kaveh was born in the Spring of 2008. He’s named after a mythological Persian blacksmith who led a popular revolt over a despotic king. We don’t expect him to do the same, but if he does, we’ll cheer him on. As a matter of fact we’ll back him 100% on anything he chooses, within reason.

It’s sort of incredible how social he is. He has no problem embracing new strangers that may offer a hug or to hold him. He passionately expresses his opinion on all things within eyesight. He even offers to share every bite of his food in a “I eat a bite, now it’s your turn” sort of way. He’s sure to let you know when it’s your turn too! When he giggles, there’s pretty much nothing wrong with the world at that moment. My son has this knack for crushing your outside world concerns with slight grin, all of which are richly documented on his Picasaweb site that has filmed his growth from birth.

The richness of his incredibly joyous outlook on life is only tempered by his temporary physical condition and his inability to speak. He’s 3 and half now and not able to walk, crawl, communicate with words, feed, cloth, or bath independently…yet.

My son is one of many children that have global developmental delays. These delays require more attention to detail in the already complicated duty of raising a child. Besides not having a solid full night sleep, save for those few nights when family rescues us, my partner and I have a litany of routines, appointments, and regular interactions with the Medical Industrial Complex. If the frustrations and emotional breakdowns with having a “not typically developing child” weren’t enough, we wage a daily, weekly, and monthly battle to secure services from insurance companies that see all clients as 20 year olds that would rather go to the health food store for remedies rather than services from medical professionals.

Despite my bleak outlook on health care, we have had some fantastic therapists, doctors, nurses, and assistants that have provided a soft landing in an otherwise perilous tumble down the rabbit hole of “diagnosing”. That feeling of not knowing or waiting for some super drug that was going to right the ship made every day a battle.

We’ve survived the first 3 and half years of battle but the struggle is still beautiful. While we appreciate the doctors compliments about how we’re “great parents” what we’d really appreciate is solid answers and a long term prognosis.

Unfortunately, technology is not advanced enough to catch up with our son. As such, we’ll plug along with our therapies, routines, school, playdates, swinging, blowing bubbles, riding in our wagon, playing with water, and generally enjoying each other’s company.

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by Julia Roberts

Around the Community; Behold BlogHer

July 29, 2011 in Featured, From Julia by Julia Roberts

BlogHer is a week away and we just wanted to say thank you. Thank you for making the BlogHer Special Needs Mini-Con possible. Without a gracious community of members from this site and throughout the blogging world that identify in some way to special needs – and want to connect – this would not be possible.

I’ve witnessed a lot of beautiful things since I co-founded this site with Dawn Friedman and in honor of BlogHer and our time together next week with some of you, we…

- Know that a mom came here and found support about a feeding tube that provides nutrients to her child.

- Know that a group of moms have connected in a way that they know one day they will meet each other and they’ll always be friends.

- Know that a group of parents helped another parent through a devastating mental health diagnosis for her child.

- Know that a family received gifts from brands that supported a Holiday giveaway and it eased some financial strain.

- Know a mom who is a featured writer in this space where she has found her voice.

- Know professionals that have offered their time without compensation to educate a community about therapies, legal issues, faith.

- Know bloggers are connecting through Support for Special Needs.

- Know people feel supported here and welcome; not matter what their personal views are because there is mutual respect and understanding.

- Know people feel safe here. Trusted.

- Know that we are putting some good out in the world and it’s personally rewarding.

- Know that we consider it a privilege to bring this place to you where we can all support and be supported.

Thank you, thank you. From the bottom of our hearts,

Julia, Dawn and Brandy

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Avatar of Julia Roberts

by Julia Roberts

What NOT to Say to Special Need Parents

July 27, 2011 in Featured, From Julia by Julia Roberts

While we’re preparing for the BlogHer Special Needs Mini-Con, we’re dipping back and running posts from our archives. This one in particular got a lot of play around the internet when it when live, but recently was brought back into the forefront because a person in the comments. Read those comments. It is true people will always sit in judgment for parents of kids with special needs as well as parents of typical kids. But bullying? Attacking? It seems, well, that sometimes we have to do more than protect our kids; we even have to protect what we think and feel to be our experience.

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Recently a thread started on Support for Special Needs about what we wish people didn’t say to us. Given that we’re all different I’m sure not everyone will agree with each mention on this list but many of the items that people wrote in about resonated with other community members. A lot of the items resonated with me.

While we all agree we have the one or few that really bug us, most of us agree that most people who say these things aren’t mean spirited people. They simply don’t understand what they are saying is hurtful, annoying or bothersome. Maybe if we share this post with people in  each of our lives, we’ll educate people on what we’d find helpful NOT to say to us…

- God only gives us what we can handle; He must think you two are special parents

- Using the word “Austistics” to describe people on the spectrum.

- Remember, you have to take care of yourself, so you can take care of them.

- He’ll speak when he’s ready to.

- When looking at my son using a reverse walker, “Wow, we need to get one of those for my (typical) 10 mo old so he/she can walk better!”

- They’ll EAT when they’re ready. They’re not going to starve to death.

- You are so much stronger than me… I don’t know how you do it

- Pointing out that my non-walker shouldn’t be in a stroller, not knowing he can’t walk.

- That my child is just playing us.

- They just need discipline.

- You two are amazing for adopting two special-needs children. They are SO LUCKY.”

- Family and friends that downplay a diagnosis.

- For a child that has tics, saying, “Do you think she is doing it for attention?”

- Anything that implies that sensory issues are not real or that we’re playing into their “fear.”

- When people say they are sorry or offer condolences for a child with disabilities.

- Any comment that starts with “If you would just…”

- What’s wrong with her?

- Don’t worry she’ll catch up.

- She’ll grow out of it.

- Is your other son/daughter “normal”? or “Are your other kids ok? (As if to imply the child with the disability is not?)

- You are so much stronger than me and/or I don’t know how you do it.

I thought I would end this with a paragraph about the well-intentioned people and go into something about the people who talk without thinking, obviously, we think to ourselves. But I decided to open up a thread on what we’d like to hear from people. So here is the YES! SAY THIS! Instead list…

- I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!

- I don’t know what to say to you, but I love you.

- How are you doing? (and actually listen to the answer)

- Quote from Elaine Hall: “How Can I Help?”

- Just wanted you to know I was thinking about you.

- I just made an extra dinner when I was cooking for us, can I drop it by now?

-  I know you had an appointment yesterday, how did it go?

- Want to drop your kids off with us for an hour or so?  (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)

- I’m on my way to the store, want me to grab you some milk or bread?

- Need any help at bedtime with the kids?

- I’m coming over to watch the kids right now for an hour so you can take a nap.

- We’re on our way to take care of the yard work.

- Sounds like you’re doing a great job.

- Here’s some things that worked for us. (preferably from people who “get it.”)

These are just a sampling of what some Support for Special Needs community members preferred…obviously, we’re all different and some on either list may or may not resonate with a particular parent of kids with special needs. Again, for me, I never got mad about kids asking questions or parents helping their child ask a respectful question. I always minded rude adults who encouraged rudeness in their kids. I never minded any of the items on the NOT list from people who cared about me because I knew their intentions were good. As the years go on I am better about saying why something bothers to the person so they understand.

One thing seems to be across the board though; special needs parents would like people to think before they speak, especially in front of their children. We’d like people to see our kids as people, with feelings. I’d like people to know that when they see what they perceive as a negative is not necessarily a negative. A woman once said to me, “She’s just walking? How old is she?” On a strong parenting day, as I like to call them, I excitedly said, “Yes! She’s young! I think it’s absolutely fabulous she’s walking!” Not sure when my daughter would take her first steps we were thrilled she was walking independently by age three.

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Avatar of Julia Roberts

by Julia Roberts

One Year! Celebrate with us!

May 2, 2011 in Featured, Giveaways by Julia Roberts

We’re so happy to announce that yesterday was our ONE YEAR anniversary here at Support for Special Needs. May 1 we launched the site and we’re so happy we did. It’s been extremely rewarding to provide resources, but also to get to know so many people who don’t mind sharing their experiences with others…and with me.

We’re happy to be giving away some neat things and all of them are from companies that have supported our efforts over the year so they are worth mentioning! So, we hope you will dig around the site and come back each day to see what sponsors are helping us!

Twelve Giveaways for 12 Months!

#1 – Smiling (and clean teeth) are awesome! So is Firefly! My kids love these because they light up and I can use all the help I can get in them brushing their teeth. Honestly? People loved this giveaway when we did it last year so I asked the fine people at Firefly if we could get a bunch of them to giveaway. I wanted 12 to represent the 12 months, but then they said more! So we have 3 of each of these Firefly designs, 18 total,…Original, Baby FireFly, Spiderman, Peanuts, Hot Wheels and Barbie.

They are made of soft, high quality dupont bristles that won’t cause microscopic cuts to children’s delicate gums, are ergonomically sized for a child’s hands,  and the light stops functioning after approximately 3 months, indicating it is time to replace the toothbrush

Available at Target, Meijer’s, and drugstores and mass merchandisers nationwide, or apparently here at our site if you do something simple and are lucky!

You know what else is cool? They have a campaign started (April 12th) for new LIKEs on their Facebook page Firefly Toothbrush will donate $1 for each one up to $2,500, to the non-profit Smile Train.

 

*******Want 1 or more Firefly Toothbrushes? Just comment here and tell us you hate cavities. Or something else that is clever! (depending on how many enter, you could get more than one!) be sure to do it by Monday, 5pm EST*******

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#2 = Kid Companions Chewelry shares two of their completely awesome necklaces with us. They are the kind of thing I’d wished I’d know about two years ago when my son was anxious to the max and was chewing his way through it clothes.

Kid Companions Chewelry: Pink Heart pendants are worn by many special little princesses! They are fashionable with a colorful lanyard which is 100% organic cotton, colorfast and pre-washed with plant-based ingredients. Safe and colorful, shapes are smooth and pleasing with a hard embossed “dot” surrounded by a rubbery heart. The hearts have a sensory dip with a worry stone feel. Circles and Hearts both have “Abstract dots on back offering interesting imagery possibilities.” Kid Companions Chewelry: Helping children with sensory challenges discreetly and fashionably!  Safe, non-toxic and made for kids, tweens and teens.

 

Kid Companions Chewelry: Black Circle pendant is our most popular choice for boys. Stylish yet discreet worn around the neck, this sensory chewy fidget is easily accessible but not an embarrassment to the user and not a distraction to others.  These efficient chewables are BPA, phalate free, lead and latex free. The durable lanyards are 100% organic cotton, colorfast and pre-washed with plant-based ingredients. Designed by a mom, sourced in USA/Canada, made in Canada and sold to the world. If you don’t win one of these, not to worry…you can buy them for $17.49 +s/h!

 

*******Want to win a piece of Chewelry? Then pop on over to the Caregiver Stress and leave a comment! We’ll select a recipient from those comments by tomorrow, TUESDAY, by 5pm EST. So…get going!*******

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Celebrate this week with us!

 

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by Admin Dawn

Around the Community

February 18, 2011 in Featured by Admin Dawn

Have you voted for us yet?

Your nominations have been tallied, and five online communities have been selected to vie for a 2011 About.com Readers’ Choice Award. Before you go to the poll, you may want to take a moment to read more about each of the candidates, and review the Readers’ Choice Award FAQ for more information on the awards. You can vote once a day for as many days as you like between now and March 8. Winners will be announced on March 15.

You can vote for us every day until March 8th! Just enter your vote here: Vote for Best Special-Needs Online Community

Remember: Our Valentine What’s in a Name Giveaway is open until midnight PST tonight, February 18th!

Check it out here and then be sure to enter!

Share Your Celebrations

We’ve removed the Achievements plugin that people found confusing and instead we’re going to start featuring your family’s TRUE achievements! Has your child done his homework every single night this week without complaining? Did your daughter wow her physical therapist? Did you reach your own personal goal? We want to know! On the sidebar of our blog posts (see it over there to the left?) we’ve put up a form that lets you submit an entry for our blog under the new Celebrations! category. Once you submit and we approve it it’ll go out to let us all know your good news.

Don’t hold back!

We want to celebrate each other! This is different than our Community News feature. Community News is for news. A great blog post, an event you want us all to know about, something your local newspaper’s web site is featuring. But Celebrate! is for our personal victories. When we start getting submissions we’ll add a Celebrate! link to our navigation menu up there at the top of our site.

Welcome to New Members

Jeni

Lora - I am a single mom of a wonderful 5 year old little girl. Jamie has Cerebral Palsy. She was officially diagnosed when she was 1 an half. She has had seizures since day one. In her short but sweet 5 years so far she has had seizures, CVI, lazy eye, dislocated hip, hip surgery(which didn’t work), Sensory disorders, a type of asthma, two brain haemorrhage’s at birth, severe allergies to food drugs and environmental and so much more that I can not begin to think of right off hand. My daughter is my angel. She is such a happy child. She loves the outdoors. She always seems to have a smile on her face no matter what. She hopefully will begin school this fall. I am excited but ever so nervous. As she will be going during the flu season and she can’t have the flu shot. Anyways, to wrap things up I try to do the best that I can for my baby girl and I love her ever so much.

Sue Robinson – Son slowly being diagnosed with Sensory Processing Disorder. Just turned 4 and has been having more of a difficult time. I am trying my best to learn more, be patient, but seem to be losing my cool more often than not.

Vanessa Infanzon – Mom to three boys, wife to husband of 13 years. Our oldest son has a thin corpus callosum and another undefined genetic disorder. He uses a walker to get around and does not talk. I stay at home for now, but look forward to writing more as the kids get older. I also facilitate team building and leadership activities for college age students.

Martin Frantz – For 32 years, I was a career prosecutor where I vigorously defended vulnerable populations like child victims of sexual assault. I retired and started a law practice helping families with special needs children. I was inspired by my son who was born 18 years ago with Down syndrome. As my son approached adulthood, I wrestled with tax laws and state regulations for disabled children. That’s when I decided to put what I learned together with my passion for helping kids.
I provide estate planning that will conserve assets and minimize taxes while maximizing the potential for your disabled son or daughter.

Amy Moss

Christy – I am a mother of 3–a boy and 2 girls. We’ve been on the “journey” since my son was 1 1/2, but he was officially diagnosed with “mild Asperger’s Syndrome” around age 8. He is now 12.

Lisa Noel – Blogger and fulltime working mom of three boys, two of which are dx’d and treated for ADHD.

Gina Gareau-Clark - I have adorable twin daughters with mitochondrial disease, and still testing for other diagnoses. I am the Executive Program Director for the Dare To Hope Foundation, contributor to the Children’s rare Disease Network, and a member of Parent to Parent’s Cobb Navigator Team. I run a small cake decorating business out of my house, http://www.twintierscakery.com

Annette Kay Fortner – I am a mother who has 2 young kids, boy (11) who has ADHD and an Auditory Processing Disorder, and a girl (6) who has developmental delays and has been in therapy for those since she was 9 mos. and that ended, but is continuing because of her motor difficulties. She also has a speech delay. My husband is in the navy and has been in for 19 years now and will soon be retiring. We are young..34 for me and 39 for him. It is very hard dealing with special needs kids and no one understands, so I am here for support.

christine – I’m 31 with 3 kids

coleen shiffert – I am 28 years old and a mother of 6 beautiful children. My 5 year old daughter Shelby was diagnosed with developmental delays and intellectual disabilities when she was about 1-2 years old. She also has failure to thrive (she has a g-tube), Kidney reflux, heart murmurs, growth hormone disorder (at 5 she only weighs 25 pounds), and hypothyroidism. My daughter is my hero for all the obstacles she has overcome and for all the strength she has. I have a wonderful and supportive family who keep me going even when i don’t think i can go on. I am truly blessed!

Rachel

Stephanie

Anne Zachry – I am a pediatric occupational therapist with over 18 years experience providing occupational therapy to children, along with caregiver instruction and support. I have a PhD in Educational Psychology. I’ve had articles published in my profession’s trade magazine and in peer-reviewed journals. I am currently employed as a school OT in Tennessee, working with students having issues ranging from mild fine motor problems to severe physical disabilities. I am certified to administer the Sensory Int System.

Have a blog?

Be sure to send me your link so I can add your feed to our activity stream! That way we can all keep up with your blog posts. Just send it to dawn@supportforspecialneeds.com

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by Admin Dawn

Meet Pierrette, living The Coffee Klatch adventure

October 20, 2010 in Around the Web, Resources by Admin Dawn

Can you introduce yourself and let us know your involvement in the special needs community?

My name is Pierrette d’Entremont. I am the mother of three girls, our middle daughter has Tourette Syndrome and sensory issues. I have Tourette Syndrome and I am bipolar. I have also had sensory issues my whole life. These diagnoses only came at the age of 19, after many awfully hard school years. As a result, I designed a special needs tool to help with sensory motor issues, the Kid Companions chewelry tool. It lets kids chew or fidget discreetly and can double as a parent-worn teether or nursing necklace for infants. This became clear while breastfeeding our yougest! (Note: Pierette sponsored one of our first giveaways! We are big fans of her chewelry!)

How did you get involved in The Coffee Klatch? Do you have a specific role there?

I got a Direct Message from Marianne Russo asking if I would be interested in such an adventure. It’s right up my alley since I communicate much better via “live typing” versus “live talking” ;) It comes as no surprise then, that my role is mostly behind the scenes. I helped design the logo and twitter background and tend to be online via tweetchat or the message board during blogradio sessions. This summer I was tremendously busy with our Kid Companions business and have had to take some time off, but with fall and back to school, I should be a more regular moderator.

What are your goals in your work at TCK? What do you hope people get out of it?

I hope that parents of special needs children can see that their child can have a succesful and productive life. If my own mother (@lornadent on twitter btw) had labeled me and put me in a special needs “box”, I may not be who I am today. I do have Tourette Syndrome. I have both motor and verbal tics. As a young adult this, along with an unmanaged bipolar disorder was intensely painful and difficult. Many times due to adults and peers misunderstanding my situation. These disorders do not affect me cognitively, in fact just the opposite, and this can make things challenging too. By educating and supporting parents, like we do via TCK, I hope to indirectly reach some of the kids out there. Children that are suffering with mental health issues and sensory issues that are often hard to explain and hard to understand.

How has being part of TCK changed your personal life? Do you have an anecdote to share about that?

I find that I can, by a few keystrokes, reach someone else in a similar situation. The world seems very small in our network and borders non-existant. Issues and challenges facing kids with special needs are certainly not unique to countries. Certainly our laws and school systems are different but we all have common ground and this parent forum alows us to share ideas and solutions that work (or don’t work) in our areas.

Is there a particular show you’d really like to call our attention to? Why was that one you want to make sure your readers don’t miss?

Well, the Temple Grandin blog radio interview was certainly a not-to-be missed edition. I listened to it with our 7 y/o daughter and she listened intensely ;) I liked the second session with Dr. Duncan McKinlay, perhaps because there were many people with Tourette Syndrome online at the same time and we could all communicate easily and quickly.That is often not the case with us, we tend to make each other tic ;) . It is also a relatively rare disorder, so speaking with others that have TS is always interesting. Dr. McKinlay is also very easy to speak with and has a wealth of readily available information. Many of the shows I’ve enjoyed the most are open actually forums. We have a set topic and then the ball rolls along with parents and health professionals joining in throughout the hour.

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Avatar of Admin Dawn

by Admin Dawn

Celebrating The Coffee Klatch

October 18, 2010 in Around the Web, Resources by Admin Dawn

In our continued commitment to spotlighting the best resources for families raising kids with special needs, we honor The Coffee Klatch all this week! Up first is an interview with one of The Coffee Klatch’s founders, Marianne Russo. We encourage you to see what Marianne has to say here and then check out their web site and see all they have to offer the special needs community!

The Coffee Klatch has several resources available for families of kids with special needs. Can you give a quick rundown of all you have to offer?

The Coffee Klatch spotlights all disabilities both physical and emotional with expert guests and internationally renowned children’s foundations. Our guests consist of physicians, psychologists, psychiatrists, advocates and special needs authors. It is our goal to provide the most accurate and cutting edge information available for any particular disorder. We try to offer a comprehensive approach to raising a special needs child bringing on specialists for co-existing issues such as vision, dental and auditory problems as well. The Coffee Klatch offers morning chat sessions Monday. Tuesday and Thursday at 9am est, Wednesday evenings on Blog Talk Radio at 9pm est as well as Special Sunday Editions twice a month. (Click here to see their event calendar.)

Can you tell us how and why you founded The Coffee Klatch?

My goal has been to encourage parents to never give up – leave no stone unturned and keep digging for answers. I often speak and write about the isolation of parents raising a special needs child. Many of these parents are on twitter to share information, seek support or find a friendly ear. Twitter is where I first met Elise and although we initially started tweeting about non special needs issues, we soon found our commonality. We spoke of all the parents that are struggling and the newly diagnosed families looking for direction. I had suggested we start a morning chat to help our fellow special needs parents and give them a place to go each morning to find others and get support. We decided to find two other moderators to help us offer a daily chat who we respected and felt could offer a broader range experience on all disabilities. We launched our chat on January 18, 2010. It became very apparent to me very quickly that many parents were getting misinformation or were not aware of therapies, medication interactions and accommodations for their children. Although we have all been at this for quite a while and are fairly knowledgeable in many areas, we are parents and not medical professionals so I felt it was not our place to give expert advice. I decided to seek out the most respected and renowned experts in the world and invite them to join us – the rest is history.

You’ve put together an amazing group of people to help you. Can you tell me how you found the people who make up The Coffee Klatch team?

The Coffee Klatch team is second to none – really! Elise is synonymous with advocacy, her background and her personal experiences in raising and educating two aspergers sons is invaluable to any parent with a child on the spectrum. Elise has advocated, accommodated and parented her sons to College and brings light to the social issues facing our kids. Jane Hotvedt is the mother of seven children with disabilities and is our go to person for assistive technology. Having one son with cerebral palsy and six others with various other disabilities, her knowledge of therapies is comprehensive. Pierrette d’Entrmont is our “know it because I have lived it” moderator. She herself has Tourette Syndrome and bipolar disorder and now has one child with the same. Her insight and knowledge brings us to a whole different level of understanding on many issues. Pierrette also has developed and manufactures “Kids Companions” a sensory solution chewable jewelry for our sensory kids. Chuck Walley is an incredible father, I first met Chuck as he joined us on our evening sessions to get support in single parenting an aspie teen, I soon knew he was the missing piece to our team He has brought about some of the most emotional discussions we have ever had on the show and shines the light on special needs fathers. The Coffee Klatch is a collaboration – we are a team. It is our differences in opinions and experiences that gives The Coffee Klatch its unique and comprehensive quality. (Note: We will be featuring the rest of The Coffee Klatch team later in the week!)

What are your future goals for The Coffee Klatch?

What are my future goals for The Coffee Klatch? I can’t imagine how we could improve on the format that we already have in place but we are always working together to bring out the best in ourselves and in others knowing that we are each others best resources. I am very proud of what we have done and feel that we are providing a wonderful resource for so many parents. We take great care to ensure that the information we put out is correct and safe. We do our homework and will continue to advocate for integrity and respect for special needs families.

For you personally, what has The Coffee Klatch given you? How has it made your life better?

Personally, I have felt for a long time that I have a message to share, I have found my purpose. The journey with its twists and turns has been difficult and challenging. Getting to the point of true acceptance, understanding that this is a life long journey, that we are our childs best advocates and that with the negatives come the positives is key to surviving and thriving raising a special needs child. It is truly an honor to be able to bring the amazing experts and foundations to struggling families and contribute even in a small way to the special needs community. I am in the process of writing a book, a survival guide for the special needs parent – “The Life Unexpected – The one you were meant to have”. I truly believe that with education will come compassion and hope that we as parents share this education with our children to stomp the stigma for the next generation of special needs children.

The Coffee Klatch has given me more than I could ever give in return. Getting to know and collaborate with this amazing team of moderators has made my life richer in every way. Meeting and interviewing the most renowned experts in the world is an incredible experience and I learn something new every day. I think the most profound impact creating The Coffee Klatch has had on my life is that it really made me recognize the gift. With each child there is a gift which needs to be fostered and cherished. Learning to focus on my child’s gift has been the greatest gift I have ever received.

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by Admin Dawn

Ready, set, read! Meet Barb, our book club moderator

August 31, 2010 in Featured Group, Featured Member by Admin Dawn

Special Needs Book ClubSince our book club is just gearing up this month we thought we’d interview member Barb who has spearheaded the whole campaign. A wife and mother, Barb not only helps out at Support for Special Needs, she also runs a ministry for families parenting kids with special needs.

Can you tell us about your personal interest in supporting families with special needs children?

My interest in supporting parents with children who have special needs really began when our son was 2 years old. Diagnosed at birth with Severe Hemophilia A, a bleeding disorder, we found that our faith life had everything to do with how we were surviving daily life with his diagnosis. There really wasn’t anything out there for parents. We also found that we had much in common with families whose children had different diagnoses than ours.

Can you tell us about Snappin’ Ministries — what your purpose is and how it got started?

We really wanted to be served and cared for, but after attending a Bible study by Henry Blackaby called EXPERIENCING GOD, it was obvious that we were being called to do the serving. We knew next to nothing, but I will contend that this what exactly what God wanted so we wouldn’t get in His way. In 2002 we began a small group with monthly meetings through our supportive church with the intent of moving beyond the four walls in time.

There is such a need that things moved much faster than we ever could have imagined. In 2007, we incorporated as a free-standing 501(c)(3) non-profit with the mission statement: Our pursuit is to continuously support and encourage those living with the daily challenge of parenting a child with special needs so that the genuine love and hope of Jesus will be experienced and shared in their everyday lives.

We minister to parents of EVERY parent of a child with special needs regardless of religious affiliation or beliefs. Of course, we would like to share the hope that we have, but that doesn’t impede our service. We aim to love as Jesus loved. You can learn more about us and find extremely helpful resources, an event calendar, links to our blog and other social media at our website http://snappin.org. Of course, you can always make a donation via PayPal on our homepage as well, which is essential to keeping our work going.

Besides the online tools we offer parents, we also send our signature gift baskets for moms and dads all around the country, offer self-published books and support parents through hospitalizations or financial difficulties with our gift card program.

What was your inspiration for starting the book club?

I was already facilitating the Faith & Disabilities Group here. I am a voracious reader and find that reading fillls my soul whether it be on special needs topics or just for fun. I sought to start a book club within our group, but so much of what I read is not merely limited to issues of faith. I thought it would be really helpful to open a book club forum up to all of those who participate in the website. Besides that, parents of kids with special needs so often don’t have the time available to participate in local book clubs in their community. This venue would offer these terrific parents a delight that they would otherwise not have because of their parenting circumstances.

How will the book club work in a practical way? How can people join?

In a practical way, this book club will be even more user friendly to parents who have a child with a special need. We will move at a slower pace than typical book clubs, reading one book per month. The selections will alternate between fiction and non-fiction. And the participants can post comments for discussion at their leisure with a final live-chat at the end of each month regarding the book. We are hoping to choose books that a parent can obtain through a local library so that it will save parents money too. To participate, parents only need follow us at the Support for Special Needs’ Group.

Do you have future plans for the book club?

As far as future plans for the book club go, we all know that flexibility is key in parenting a child with special needs. The book club will be no different. Since it is so new, we will definitely be open to adaptation as things become more apparent to us. We would love for those interested to be willing to share their personal reviews of books or their “bookshelves” on GoodReads.com or LivingSocialBooks if they feel comfortable. Word of mouth can and often is the way many of us find our favorite books!

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