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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

Autism Awareness Month: If I only knew…

April 25, 2011 in Featured by Jennifer King

It’s April. Autism Awareness Month, and the month is almost over. As the mother of a seven (almost 8 year old son) on the spectrum, I felt like I should say something. In fact it’s been weighing on me greatly, just what I should say.

The truth is I have written and re-written this post what feels like a million times and was never happy with it. I wanted to say something, but I’m no expert of any kind. I’m just a mom, not even one of those Autism Warrior Moms you hear tell about. I’m just an ordinary mom of two regular type kids, one of whom happens to have autism.

So then I started over from scratch. I thought, if there was one thing I wish someone could have told me about autism before my son was diagnosed, what would it be?

So here goes…

There is a saying you may or may not have heard, ”If you’ve met one person with autism, you’ve met one person with autism.” It’s seems sort of obvious doesn’t it? Not all typical people are exactly the same, why would those with autism be. But it’s a truth that I think many people don’t fully grasp. Before my son was diagnosed, I didn’t get it. Not at all.

I thought I knew a fair amount about autism. I’d read a couple of books. I’d met a handful of people who’d been diagnosed with it. I knew about Temple Grandin from when I was taking animal husbandry courses in jr. high and high school.

But the truth is the image I had in my mind was a very stereotyped one, and it was an image that did not match up with my son. Even when family members suggested I look into it, I just couldn’t see it. I did mention it to the pediatrician who didn’t see it either. She saw some delays, as did I, but not autism. If I’d known, I mean really known? I don’t think I would have left it at that.

I’d wish I’d known that kids with autism can be goofy, and silly and giggly and cuddly. I wish I’d known just how smart and talented and loving and amazing children with autism can be.

I wish I’d known all that, I mean really known that, when Max was little and first showing the signs. Would an earlier diagnosis have made much of a difference for him? It’s hard to say, but at least I would have known I had done my best for him from the start.

I would have understood why he struggled with things that other children seemed to sail through. I like to think I would have been more patient with him. A lot more patient.

And maybe… just maybe… I wouldn’t have felt so alone.

Because there are so many of us. Not just parents of children with autism, but all of us parents of children with special needs, children who struggle to fit in a world not made for them. We are not alone.

We don’t have to be.

Community member Jenny who blogs as Jittery PlanetSingle mom to two boys, one with autism and one neurotypical, starting over again smack dab in the middle Minnesota.

Traveling Options

April 20, 2011 in Featured, From Julia by Julia Roberts

Not long after the kids were diagnosed with ARPKD I came across that popular essay that many people in the special needs community identify with and it’s of course called Welcome to Holland. It uses the comparison of raising a child with special needs like landing in a place like Holland when you were really expecting Italy.

When I first read it in those early days, it resonated with me. It did because I was still wrapping my mind around raising two kids with unbelievable needs and it made sense…I wanted healthy kids, I didn’t get them, but I still love them.

I got to thinking about Holland and the pretty picture I had in my head. I thought sure, it’s pretty, but it also sucked. For me. Windmills weren’t all that great, and well, tulips are no sunflowers. I’ve been known to even cuss about Holland. For a lot of people I know, it’s a metaphor that really speaks to them. I actually find it beautiful that it speaks to them, cause it is lovely, in it’s own way (that doesn’t speak to me). To embrace what feels right is a lot of what parenting is at its best, right? I embrace that we are different, because we can learn from each other if we’re open to learning. It’s what makes my little corner of the world interesting.

When Dawn and I were working out the plan (yes, that’s ongoing!) for this site we talked a lot about what type of community we wanted to build and we always came back to an inclusive one at the core. We wanted to bring to focus different resources for families and create a safe place for dialogue.

I think we’ve done that and I’m proud. Do we believe/get behind every idea presented on the site? Um, no. But I’m proud that we share what we do and for people to present questions, if they desire. Is everyone going to agree? Um, no. Because that’s not real life (not in my world anyway).

We’ve had to defend someone on this site who was challenged in an aggressive way instead of in a way that fostered discussion. Unfortunately the situation immediately resulted in a community member leaving the site and for that I feel bad. I also feel bad that there wasn’t a continuing dialogue that offered a different point of view. The back and forth conversation never happened so that member was never able to share her point of view.

We present resources and we trust that people in the community will do the research they want to and need to to make the decisions that are best for them/their kids. Who are we to decide for them, when a resource has a large following/believers in ideas that work for them? For the comment that was left? We won’t delete comments like that but we do have to interrupt and say whao, let’s talk it out.

Some vial and hurtful comparisons were made in light of the situation which in this case pretty much tells me we can’t even agree to disagree, which is troubling. In the end, for us, presenting resources wins out, because everyone deserves to find their village. Even if it’s in Holland. What works for one in Holland might not in Italy. Also? If you want to travel between Holland and Italy, we’re behind you. Don’t want to see either? Don’t fly there. I defend your right not to go. I also defend our right to present all of the travel options.

We Were In Real Life

March 9, 2011 in Featured, From Julia by Julia Roberts

Rody, Our Mascot!

One of the important things about this site is the connection. Connecting with others who can relate is by far one of the best things about coming here and sharing. Here, you can support and be supported. We love to see people talk in the groups and help each other.

One of our 2011 initiatives was to bring that connection to life by hosting small events. Atlanta seemed like the logical choice and so we set out to plan. We knew we wanted it to be educational. Casual. Affordable. We didn’t want it to start to early or end to late. We talked about future childcare options. Large locations, central to Atlanta. Again, affordability. We ended up settling on a 3 speaker format and the theme of Relationships. Personal, medical and educational relationships and navigating them better in a special needs world.

I’m proud and happy to say our inaugural IRL event in Atlanta was a huge success! Thank you to our sponsors that made it affordable for attendees ($15) and muffins and lunch were deliciously provided by Babette’s Cafe.

Presenting sponsor: Celebrate Calm

Additional sponsors: Hewlett-Packard, and Spin Master

How do we define success?

  • Everyone moved in from seats around to gather for lunch to talk.
  • Everyone loved the format of speakers then lunch then speaker then an hour before we left for the day.
  • Everyone asked when the next one was going to be held.
  • Everyone asked to be put on our mailing list.
  • Many people hugged when they left.

We hope to bring this type of event and others to other cities where we have members. If you think you’d like to have one in your city, let us know! With Dawn in Ohio and several community members there as well, it’s the next logical location…and of course, BlogHer! But that’s another type of event altogether.

Thanks for letting us create a different kind of community. One where we can grow and learn from each other and one where we can figure out what kind of community we want! Thanks Atlanta!

 

Please vote for us!!

February 15, 2011 in Around the Site, Featured by Admin Dawn

Terri Mauro of About.com’s Special Needs Children channel is hosting a best special needs resources contest and we are up for an award! We have only been around for about nine months and change and it is so exciting to already be getting recognition!!! We thank all of YOU because it is our community members who make us great!!!

You can vote for us daily by clicking here. The contest runs until March 8th and you can vote every single day. It would be so great if you would! The recognition is already bringing new members to our site, which is so exciting. We love seeing new registrations roll in! The more we share the greater our power!

What blog recognition means to me

February 9, 2011 in Featured, From Julia by Julia Roberts

Me with Ellen from Love that Max

I’m not really a “vote for me” type of person with blog awards. I don’t blog for recognition or blog buttons. I blog to get the rumblings out of my head, I blog to get support, information from readers and somewhere along the way I also realized I blogged to educate. So when I learned this week that my blog was listed as a reference as a blog special educators should read, I was very proud. I was listed with a few blogs I read and writers I admire and it meant a great deal to me.

We have a lot of bloggers here and we even have a blogging group and a blogging conference group. If you let us know, we’ll connect your blog to our activity stream so when you update your blog, it will feed to the site and community members can get to know you better. It’s one of the things we love about our site because it lets us get to know each other better.

I love blogging and bloggers and I have loved being able to meet other bloggers. I went to two blogging conferences last year and they were both great experiences. You’ll note the scrolling picture of me with my friend Anissa, whom I met because of the site and I now write for at Aiming Low. I’d interviewed her for the site because her daughter had cancer and is now in remission. See? It’s wonderful crazy the people you meet. I’ve been lucky to have been able to build new friendships with people like Anissa and others, knowing I wouldn’t have been unless I claimed the title blogger. Meeting in real life is one of the things we strive for in our community. It made sense for us to create our IRL Connect series so we could share in person and we’re hosting our first IRL Connect event in a month and we’re also working on a pre-BlogHer event for special needs parents to connect. We’re so excited to bring people together online and offline.

Thank you for letting me share here. Your wisdom, your strength, your support means everything to me. I know that many other people benefit from the same things and that is exactly what Dawn and I pictured when we dreamt up this little community.

Welcome to this week’s New Members!

January 21, 2011 in Around the Site, Featured by Admin Dawn

Wow, we are growing quickly! Welcome to all our new members!

Jean Kes: “I am a stay at home mom. I have my own home-based business in the coffee business. Everyone usually drinks coffee, latte, mocha, hot chocolate or green tea and this is healthy. I have 1 son who is 10 and has L1 Syndrome (genetic hydrocephalus) CP, non-verbal (for the most part) has a communication device, in a wheel chair. I am big advocate for special needs. Believe in alot of alternative therapies. My son get’s weekly massage to help with different issues we have done Hyperbaric Oxygen Therapy, Vision Therapy, Music Therapy. He does Conductive Ed in the summer a very good program to help with gross motors skills and all. We have done Ionic Foot Bath, and others. I like to think outside the box. We also like to do alot of natural alternatives with out the side effects to stay healthy. I go to Closingthegap.com which is a assistive technology conference plus others. I enjoy being home making $ so I can be there to help my son with what ever he needs.”

Lydia Roman

Brandi Fought: “I am the mommy to two wonderfully special children. Matthew is almost two with many diagnosis. Autumn is one and a half. She was born much too early and is paraplegic. We live our lives one day at a time, celebrating each and every victory!”

Emma Sterland: “I manage a website for parents, carers and professionals connected with learning disability. http://www.Netbuddy.org.uk is a free online resource with hundreds of practical tips and ideas on supporting someone with special needs.”

Stephanie: “I’m a stay at home mom to 2 kids. My youngest, Jack, is 17 months old and has special needs. Jack was born with congenital bilateral cataracts. He had cataract removal surgery and now wears glasses or contact lenses. He is legally blind, has microcephaly and major developmental delays. Jack is extremely small for his age and has been labeled with faiilure to thrive. He has been tested for chromosome abnormalities, infectious diseases, and metabolic disorders. Tests have come back normal, so we are still on the hunt for a diagnosis. In the meantime, Jack does OT and visual stimulation therapy.”

Kathleen Rainwater: ”

Single mother of three special needs children, two biological, “typical” children (now adults!), and one stray foster daughter. I chose this gig. My special kids were adopted. My three special kids are still at home: ages ten, eleven, and nineteen. It’s just now occurring to me that probably two of them will be with me for life. Some days, I’m very okay with that; some days not so much. It’s a rough road for us all, but I want it to be a terrific adventure. Kameron, the eleven year old, was a 25 week preemie with a grade IV bleed, crack-exposed; vented and trached for the first 3 years; now diagnosed with AVMs. He is very smart, funny, and can be annoying as heck – especially to his sister, Klaryssia. He also has CP and is DD and is considered a spastic quadriplegic. Klaryssia is the 19 year old; she has DD and mental health issues, but is pretty high-functioning, maybe around eight years old cognitively… Kobi is ten and only has some learning delays. He was also premature, but his main issues stem from failure to thrive and drug-exposure in utero. I don’t have much compassion left for their bio-moms. But, I love the children they made.”

Christine Patch: “Mom to 3 boys. Twins – William & Kevin born at 27 weeks in 1999 and Tyler was born full-term in 2005. The twins both had a Stage III brain bleed, only 1 requiring a VP shunt. They are developmentally delayed and have tested on a 2 – 5 year old level and classified as MR.”

Amy Fisher: “SAHM to son with hypotonia, delayed myelination, apraxia of speech & epilepsy. No dx – though have literally had every genetic test in the book – all neg./normal.”

Jennifer Kneice: “I have 4 children. 3 have some special needs right now. I love them all.”

In Real Life Connect Event in Atlanta

Meet Julia in person and get inspired by speakers Sue Boardman, MDiv, PhD and special education teacher Whitney Blackmore at our first (but not our last!) In Real Life Connect event! Our goal has always been to help you build relationships online and off so expect more meet up opportunities around the country this year! We would love to see you in Atlanta this spring! Get more information and register here. (This first ten registrants will get a copy of A Boy and a Turtle, Lori Lite’s relaxation book for kids!)

Children love to visualize or imagine filling their bodies with the colors of the rainbow. This effective stress-management technique also known as guided imagery is widely accepted and used by both traditional and holistic communities. This gentle but powerful technique stimulates the imagination. Visualization can have a positive impact on your health, creativity and performance. It can lower stress and anxiety levels. It can be used to decrease pain and anger.The colorful imagery in this story quiets the mind and relaxes the body so your child can manage stress and fall asleep peacefully. Relax with colors!

Remember our Thursday chat!

Each Thursday we have a live chat from 8pm EST. Our chat moderator, community member Michelle Howard signs off at 9pm but you are welcome to hang out as long as you like. Our chat is available to any community member at any time so feel free to set up your own chat time, too.

Avatar Issues

Our software has some crazy bug and we’re waiting for an update that will fix it. Meanwhile if you’re having trouble getting your avatar up there as the right size, you can email your image to Dawn and she’ll crop it and email it back to you so it’ll upload correctly.

K’nex Wish List Giveaway

November 26, 2010 in Giveaways by Admin Dawn

Have you seen K’Nex? K’Nex is a versatile building toy that allows your child to create structures that use different length rods with connectors that allow kids to make 3-D structures. You can see from the Ferris Wheel set picture the kind of complex creativity K’Nex encourages in your resident builder! And if they’re building their math, physics and geometry skills? Icing on the cake! Little kids can use the chunky K’Nex sets for preschoolers to start exploring their architectural world — you’ll be amazed at what they can discover with these kits!

Here’s what we’re giving away:

K’Nex 350 Piece Value Tub — Loaded with 350 parts to build anything you can imagine – cars, planes, boats, ferris wheels and more! Plus, building ideas for 20 different models are included to get you started. The sturdy storage tub makes clean-up easy and is a great place to store all your building parts or partially built models. And, the 350 PC Tub works with other building set brands, so there are even more building possibilities! For ages 7+.

K’Nex Light Up Ferris Wheel — Inside the wheel, multi-colored lights spin freely to create a dazzling light show! This set includes 525+ colorful K’NEX pieces, including a motorand an exclusive LED light bar with 6 pre-programmed light routines. Follow the color-coded instructions to build this exciting Ferris Wheel step-by-step. Then switch the light bar and motor on and watch the model come to life. As the Ferris Wheel spins, the light bar is geared to spin in the opposite direction, creating a dazzling light show. With 6 pre-programmed settings, the lighting effects can be customized with the push of a button. Instructions for a second dynamic model are available on www.knex.com. Light-Up Ferris Wheel is appropriate for builders and thrill ride enthusiasts ages 9 & up. Requires 2 “AA” and 3 “AAA” batteries.

K’Nex NASCAR No. 88 AMP Energy, No. 24 DuPont, and No. 14 Office Depot Car Building Sets — Sets include over 100 K’NEX bricks, rods and connectors, as well as wheels for push play. There is also a K’NEXman in each kit so you are ready to race! Once built, car measures 7″ in length, representing 1:29 scale – and with custom parts, sponsor logos and color scheme, it resembles the real thing! Package includes official NASCAR hologram, with step-by-step building instructions inside. Recommended for ages 5+.

K’Nex Monster Jam Intro Trucks — Build six of the most popular monster trucks in Monster Jam® – Grave Digger®, Maximum Destruction®, Monster Mutt®, Monster Mutt Dalmatian®, El Toro Loco® or Blue Thunder®! Each set comes with over 30 parts, including a buildable body shell that works within the K’NEX system. There is also working suspension, big, chunky tires and a K’NEXman driver! Authentic logos and graphics recreate the look of each truck. Once built, monster trucks represent 1:43 scale and perform like the real thing. You can even use the wedge-shaped box as a ramp! Step-by-step building instructions included. Recommended for builders ages 5+. Each sold separately.

K’Nex Sesame Firehouse — Firefighter Ernie to the rescue! Your child will enjoy hours of fun building the Sesame Street Firehouse – along with Elmo and firefighter Ernie – and creating his own Sesame Street neighborhood! Includes “Play & Learn” activity sheet and additional building ideas. Loaded with 43 parts to build the fire house, Ernie, Elmo, a fire hydrant and a fire truck crossing sign. Pairs perfectly with the Neighborhood Collection Fire Truck for lots of building fun and after building play. The fire house door even opens to drive the fire truck through!

How do you enter?

We’re highlighting our scrapbooking group today run by community member (and resident Creative Memories consultant) Siobhan! Just come by and tell us about a clever idea you have for displaying your kids’ art work or your challenge getting your photos together or a question you might have about digital scrapbooking. Here’s the forum post so come on by and enter!

Keep Myself Calm Giveaway

August 30, 2010 in Giveaways by Admin Dawn

Sew Sensory Weighted BlanketsWe present this giveaway thanks to Community Member Dawne Hammerschmidt, owner of Sew Sensory. and mom to Dane and Olivia. Dane has Down Syndrome and Sensory Processing Disorder. Here’s Dawne’s story from her about page:

“[Dane's] sleep was very restless, much of the time spent rolling, sitting up and falling back over, and falling out of bed – despite a barrier!  During the day he’d be very active with little attention span and very high frustration level.

Our Early Intervention worker had suggested the use of a weighted blanket and/or vest.  The ‘loaner’ blanket offered by the program had an extensive waiting list..so the research began.  What an eye opener!  Not only were these items very expensive, they were ugly and had a therapeutic look/feel to them.  The more I looked, the more I found that many of the manufacturers’ really don’t have an understanding of what they are selling.  Some are using lead materials to weight their products!!!  Many use organic materials which sounds great but may cause allergies, attract insects/pests and are unsanitary as they are un-washable.  Some even use rocks. Rocks are porous and retain some level of moisture  (even if they feel dry to the touch) which of course can lead to mold – then I thought; “Do I really want to put a  loads of rocks in my washer and dryer?”

As I continued delving into what I needed,  I found that there were pre-manufactured sizes and weights.  So despite the recommendation of a weighted blanket being 10% of my child’s weight plus 1 (one) pound (Dane weighed 26 pounds at the time) I could only purchase an 8 pound blanket!  It was about at this point that I decided I would be sewing my own.  After doing so and discovering what a difference it makes for my son, well, the whole family, I thought about how great it would be if other parents could easily find what is suitable for their needs.

Dawne is sponsoring this week’s giveaway for a weighted lap blanket! All you have to do to enter is be a member of our site and comment below so we know you want it. We’ll announce the winner next week! Meanwhile, check out Dawne’s site to see all she has to offer (and she takes custom orders)! Also if you have questions about the blankets, remember you can message Dawne by logging in, going to her profile and sending it from there. We know she’d love to hear from you!

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