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10 Things That Make My Special Needs Life Easier

March 28, 2012 in Featured, From Julia by Julia Roberts

I’ve been thinking a lot about what makes my life easier. Sometimes it’s the small things, right? I got to thinking about the little tangible things as well as the big things (like how people treat me during my life in the special needs world). I have a lot more, but I was wondering what YOU want to add to this list. What makes your (special needs) life better, easier, brighter? Little things and big things! Share!

1. Cute, age appropriate pants with elastic bands. Better yet, jeggings because they look like skinny jeans but don’t fasten (for the kids, not me, unless you count the yoga pants I am wearing right now but not for yoga).

2. Medicine pill boxes for 7 days, with AM and PM. Honestly, it seems like a small thing, I know, but it’s life-altering.

3. Helpful front desk/nurses, especially when they smile and act like they like their jobs.

3. Other parents who have open minds to kids with differences because this usually means their kids do, too.

4. Friends who cook. And share.

5. Doctors willing to use technology. Oh, the faxes I have sent across the country. But the email? That really works fast!

6. Drive-through pharmacies. Enough said.

7. Throw-up chin buckets. Too much said.

8. Numbing cream.

9. ER fast track for already compromised kids? Brilliant. And kind. (Also, who invented this?)

10. Velcro shoes instead of laces.

This originally ranMarch 16, 2011…add to the list!

 

 

Happy new year everyone!

January 7, 2011 in Around the Site by Admin Dawn

Here’s what’s been happening around our community since we last updated:

Are you in Atlanta?

Join us on March 5th for our first (but definitely not last) In Real Life Connect event! We will be adding details over the next month as we finalize speakers but you can get a head start on registration here! Keep an eye out for our updates!

On the Forums

Julia is looking for tips on helping her son with his confidence issues. Have ideas for her? Please share them here.

Andy asked for (and got!) some tips on getting a new digital camera. (Did you know you can share pictures in your profile? Get more info on that here!)

Siobhan is offering a New Year’s discount on Creative Memories scrapbooking supplies! Go here for details — offer ends January 31st!

Melanie would like to hear from community members with experience changing a child’s behavior meds over here.

We have lots of new members! Welcome!

Vicky: “I am a mom to two dtrs who are my world. I am a nurse who currently works in a childcare center.”

Karen Yaughn: “I am a 48 year old single mom of a 7 year old daughter diagnosed with Freeman Sheldon Syndrome with Arthrogryposis, glenoid hypoplasia, midline cleft in the soft palate (repaired).”

The Domestic Goddess: “I am a Domestic Engineer, Total Babe and SAHM to two boys with autism, ADHD, OCD and a variety of other acronyms. I was a band geek in high school, live vicariously through computers and prefer dogs to people, which means I have STELLAR social skills.”

Renee Pratt: “I am a 29 yr old single mom. I have little boys who are my world. My 6 yr old has several disabilities. We currently live in Gwinett & are trying to build a support network with other social need families. My son attends Kanoheda. He is in 1st grade. He has trouble being social but does well doing one on one with a similar diagnosed child.”

Cheneespeaks

Julie Tutwiler: “mom of 2 kids – son has Down syndrome, ADHD and AV Canal defect; daughter has some ADHD and mostly LOTS of attitude”

Sadie

Laura LaPlante: “My name is Laura and I have 3 wonderful kids! My oldest who is 10, has Lyme’s disease, my middle who is 4 has moderate Sensory Integration Disorder along with Lyme’s which was passed through via pregnancy and my youngest who is now 18mths has severe “intolerances” to all Dairy and Soy products (both food and non food items). We remain active to the best of our ability. I have a wonderful, supportive Husband who tries his best. My jobs as both Mother, Wife and Employee to Sprint make my life non-stop.”

Jennifer: “Mother to 4. 2 That are differently-abled. My oldest is nearly 20, my 2nd(ASD-PDD-Nos) 15, my 3rd (severe verbal childhood apraxia, global) is 7 and my 4th is almost 4!”

Jennifer Giroux: “Mom and advocate of 3 children, the oldest of whom has hydrocephalus/strabismus/amblyopia and all the LDs that go with it: NVLD, apraxia, cognitive delay.”

Dana Sears: “I am a Blog designer and a Mom of three boys under five. My second son Mason has been diagnosed with Smith-Magenis Syndrome and PDD-NOS.”

Rachela

Carolyn Dagliesh: “My husband and I are the parents of two wonderful children. I have a home organizing business – Simple Organizing Strategies and I offer in home organizing support for general organizing, paperwork management and closet design. The larger part of my business is my Systems for Sensory Kids business – http://www.systemsforsensorykids.com. As the parent of a “sensory” child, I have learned the importance of organizing supports for “Sensory” Kids in the home. Sensory kids—like those with anxiety disorder, sensory integration dysfunction, learning challenges, ADD/ADHD, obsessive/compulsive disorder, high-functioning autism, Asperger’s syndrome, or other sensory challenges—often look at the world through a different lens. It can be challenging to connect with them, and little things can often turn into major stress points. Learning simple ways to create structure and routines as well as ways to connect and communicate can be life changing in your day-to-day living experience – something that can make the whole family more successful!”

Nicole

Mary

Stacy

Nicole Gutrich

Meagan Watts: “I am the mother of a 3 yr old with Childhood Apraxia of Speech and Sensory Processing Disorder. He’s making tremendous strides and working hard, but we have longer to go before he’s actually able to communicate with others.”

Christie Roberts: “I have two special needs grandchildren. I am a grandmother to ten children.”

Charity

I know we’ve missed a lot of new members since our Great Big Wish List giveaway derailed our community updates! If you would like a special shout-out for your intro, please contact me so I can add you to our list for our next update.

Meanwhile, did you know you can search member profiles? Just go to our members page and put your search term in the search box at the top of the list. You can also list members by new registrations, too, to see who has joined us recently.

We’re looking for your input!

What do you want to see on the site in 2011? So far we’re hearing you’d like more livechats! Michelle Howard has stepped up to volunteer to host a Rant Chat Thursdays at 8pm EST. Just drop in! You can check out Michelle’s blog including her Ranting Sessions for Stress Relief here!

More Intellectually Disabled Youths Go To College

October 25, 2010 in Special Needs News by Admin Dawn

Zach Neff is all high-fives as he walks through his college campus in western Missouri. The 27-year-old with Down syndrome hugs most everybody, repeatedly. He tells teachers he loves them.

“I told Zach we are putting him on a hug diet — one to say hello and one to say goodbye,” said Joyce Downing, who helped start a new program at the University of Central Missouri that serves students with disabilities.

The hope is that polishing up on social skills, like cutting back on the hugs, living in residence halls and going to classes with non-disabled classmates will help students like Neff be more independent and get better jobs.

In years past, college life was largely off-limits for students with such disabilities, but that’s no longer the case. Students with Down syndrome, autism and other conditions that can result in intellectual disabilities are leaving high school more academically prepared than ever and ready for the next step: college.

Read more here: More Intellectually Disabled Youths Go To College : NPR.

Penn State embraces ‘Diversability’

October 13, 2010 in Special Needs News by Admin Dawn

An estimated 1,851,000 people in Pennsylvania — or 16.5 percent of the population age 5 and older — have a disability, according to the Center for Personal Assistance Services, individuals with disabilities come from every background, socio-economic status, gender and age.

October is the kickoff month for year-round programs across the country that highlight the abilities and skills of all Americans. In Centre County, the theme of the month is “Diversability,” which emphasizes the varying abilities and talents of people with disabilities.

Penn State faculty, staff and students as well as local school and community members from areas throughout the county are invited and encouraged to attend these events.

The intent of the “Diversability” events is to provide an opportunity for individuals to discuss and explore questions about accessibility, equality and inclusion for people with disabilities in their communities, including work, school, home and recreation.

Read more here: Penn State embraces ‘Diversability’ – Community | Centre Daily Times – State College, PA | Penn State, Nittany Lions, weather, news, jobs, homes, apartments, real estate.

Presidential Proclamation: National Disability Employment Awareness Month

October 8, 2010 in Special Needs News by Admin Dawn

As Americans, we understand employment and economic security are critical to fulfilling our hopes and aspirations. We also know we are stronger when our country and economy can benefit from the skills and talents of all our citizens. No individual in our Nation should face unnecessary barriers to success, and no American with a disability should be limited in his or her desire to work. During National Disability Employment Awareness Month, we renew our focus on improving employment opportunities and career pathways that lead to good jobs and sound economic futures for people with disabilities.

This year marks the 20th anniversary of the Americans with Disabilities Act (ADA), the landmark civil rights legislation that established a foundation of justice and equal opportunity for individuals with disabilities. In the two decades since its passage, much progress has been made. However, Americans with disabilities continue to be employed at a rate far below Americans without disabilities, and they are underrepresented in our Federal workforce.

My Administration is committed to ensuring people living with disabilities have fair access to jobs so they can contribute to our economy and realize their dreams. To help achieve this goal, I signed an Executive Order in July to increase Federal employment of individuals with disabilities. This directive requires Federal agencies to design model recruitment and hiring strategies for people with disabilities, and to implement programs to retain these public servants. To ensure transparency and accountability, agencies will report on their progress on hiring people with disabilities, and the Office of Personnel Management will post the results of agencies’ efforts online for public evaluation. As the Nation’s largest employer, the Federal Government can become a model employer by increasing employment across America of individuals with disabilities.

Read more here: Presidential Proclamation–National Disability Employment Awareness Month | The White House.

Would you disclose a non-visible disability during an interview?

September 17, 2010 in Special Needs News by Admin Dawn

If I asked you to guess the largest minority and the fastest growing subgroup of the population in the U.S. what would you say?

According to the U.S. Census, the answer is people with disabilities. This group runs the gamut from visible disabilities to non-visible disabilities such as chronic health issues like asthma or diabetes; partial sensory impairment like poor vision or hearing loss; learning disabilities; and mental health conditions like depression. According to the U.S. Department of Labor, if you don’t currently have a disability, you have a one-in-five chance of developing one before retirement age.

I don’t argue with those statistics-I think we’ll even discover some new disabilities now that we have a generation of people who have grown up using computers and cell phones their whole lives. (My guess is that in about 40 years, zillions of people will be seeking early retirement due to Chronic Texting Thumbs Syndrome or Headset-Induced Giant Ear Disease.)

What worries me is how the workforce will treat those who have disabilities. Will their increasing numbers mean they’ll be more readily accepted by employers or will the four-in-five people who are not disabled end up landing all the jobs?

Read more here: Would you disclose a non-visible disability during an interview? | Career Management | TechRepublic.com.

People With Disabilities Make Able Workers

September 9, 2010 in Special Needs News by Admin Dawn

Twenty years after President George H.W. Bush signed the Americans with Disabilities Act into law, workers with disabilities still face the daunting challenge of finding and keeping a job. While we lament a national unemployment rate that’s now approaching 10 percent, imagine facing a job market that has a 63 percent to 69 percent unemployment rate.

Sound unbelievable? According to employment data released by the U.S. Department of Labor in late 2009, just a little over one third of men and women with significant disabilities were in the work force.

Despite tremendous advancements in equality and opportunity that have been made since this important act was signed into law in 1990, 65 percent of people with disabilities are without jobs at any given time.

Read more here: People With Disabilities Make Able Workers | Richmond Times-Dispatch.

Aspie Advocate: Helping parents and kids win the IEP game

August 27, 2010 in Insider Insight, Resources by Julia Roberts

Meet Carol Greenburg, Executive Director of Brooklyn Special Needs Consulting, and recently appointed East Coast Regional Director of Autism Women’s Network. I had the pleasure of meeting Carol at BlogHer (well, formally meeting her at a book reading for My Baby Rides the Short Bus, where I had this picture taken) and from the moment I saw her speak at the Autism session at BlogHer I liked her. She has a wicked sense of humor and her delivery and pause at just the right moment is a gift. She wicked smart, too. We’re proud and grateful she allowed us to interview her for Support for Special Needs.

Julia

Can you tell us a little about yourself and your family?

We have three humans and two cats in our house. (Which species outranks which should be obvious to those in a similar position.) My husband, John, is a marketing and publicity genius, owner of Soho Digital Art Gallery, the only gallery in NY dedicated to the display of digital art. He’s also an all-around great guy without whom I can’t imagine doing any of the work I do. I’m a professional juggler, uh, I mean mother, and constant irritating barrier between my eight-year-old and his ever more creative mischief-making. The hardest part of my job, other than housework, is keeping a straight face in the aftermath of his antics. Like my son I’m on the autism spectrum, which legally qualifies us as people with disabilities, but I prefer to think of us as a traveling consciousness-raising team using our autistic superpowers to defeat ignorance and serve justice. Makes trips to the supermarket more interesting. My little boy struggles with a a severe speech delay, and other autism-related difficulties, which he gracefully balances with song, dance, sports and most importantly laughter.

Can you talk a little bit about what you do? An anecdote to illustrate would be great.

As Executive Director of Brooklyn Special Needs Consulting, an advocacy and consulting company that serves Brooklyn and beyond. I walk families through the IEP process, helping them prepare for meetings and attending meetings with them. I consult with institutions about effective programs for special needs students and offer workshops to parents and professionals. As an advocate specifically, I try to help alleviate parent confusion, empower them as full members of IEP teams, and help school personnel to do the jobs they were hired to, but don’t always have the budget or staff-power do. Calm and imagination are an important part of my job, as many discussions about who gets what services can quickly escalate into fights. Fights rarely serve anyone. (Plus they make my ears hurt. Believe me auditory sensory issues can really ruin an otherwise perfectly good day.)

The best way to tone it all down is to acknowledge the wisdom, even if it’s only the most microscopic shred of wisdom, of the people who disagree with you. So when a bunch of teachers tried to force one of my clients, a fourteen-year-old interested in writing, to take what amounted to a study hall rather than the advanced English class he wanted, I picked one word out of the conversation that came up frequently. Self-advocacy. The teachers and administration kept saying this word reverentially and bundling it up in a way I still don’t understand with this kid sitting in a resource room with very little of the structure he needed and could get out of the English class he himself requested. “I couldn’t agree more about the importance of self-advocacy” I began, because that’s what I believe. “The folks from the school seemed pleased as punch. “And at the heart of self-advocacy is a student’s right to choose his own electives,” I continued because I believe that too. Now, my autism interferes with my ability to read facial expressions and body language, but even I know what drooping shoulders and frowns mean. In the end it worked out for everybody, though. I hear my client is thriving in his class, and the teachers are genuinely happy for him.

What was the inspiration for starting this business?

One of my closest friends was diagnosed with cancer a week or so after finding out her son was on the autism spectrum. Since my son got his diagnosis a year earlier and I had a little experience with the special education system We figured that if she could stand aggressive cancer treatment, I could handle a little aggressive advocacy on behalf her child. About three months into the process, I found myself getting him services that no one else had been able to get. That’s when, with my husband’s encouragement, I decided to attend some workshops and eventually turn pro.

Why do you think families have trouble doing this on their own?

A lot of parents are not fully aware of their rights, so they don’t have the proper information upon which to act. But even the best informed parents often need someone else to step in and offer some objectivity. I occasionally lobby for a service or two for my son, and of course I participate in his IEP meetings. But because he has a unilateral placement in a private school, we need to sue every year to get reimbursement for his tuition. We’re lucky to have a terrific lawyer. Now I don’t have a law degree myself, but even if I did, I wouldn’t represent my own family. Just as lawyers shouldn’t represent themselves at trial, I feel that advocates shouldn’t represent their own families at Due Process, unless there are no other options. And while it’s true that, when everyone is behaving cordially, parents really are the best advocates for their own children because no one knows those children better. When conflicts arise sometimes they need someone who isn’t as close to the situation to help them strategize and steer clear of unnecessary escalation. Due process is expensive, time and energy consuming, and inherently adversarial. Sometimes, unfortunately, it’s unavoidable and when it is I’m always happy to recommend lawyers I trust to represent families. But my preference is to try and keep everything in the conference room so that everybody stays out of the hearing room. That works out better for families and taxpayers and yes even for lawyers. No decent special ed lawyer wants to lose a case and set a precedent that might hurt children in the future.

What one piece of advice would you give any parent who has concerns about their child’s IEP?

It depends what the specific concern is. If the IEP lacks clear goals, you’ll need one strategy, but if the IEP is picture perfect, but not being enforced then you’ll need another. Overall, if you feel like your input isn’t heard or valued, you’re probably correct. A very casual disrespect of parent’s expertise in their own children is extremely common. It’s also legally and morally wrong. I recommend all parents set the tone write parent attachments that paints a paragraph-long picture of your child (motivators, special interests, observations of behaviors at home) and provides a list of his or her most urgent needs, ask to read them right after everyone introduces themselves at the IEP meeting.

If you’d like feel free to give us a link to a blog post you think would be helpful for people starting or in the IEP system and finding it challenging. And please provide us a link to the business site (didn’t know if you want someone to come onto the site in a particular area)

I don’t want to overwhelm anyone with information so I’m just going to give you two URLs that I heartily recommend . I worship at the altar of wrightslaw.com. They have a website with a search engine, and a terrific blog. I’m also a member of Council of Parents Attorneys and Advocates, which does require a modest fee to join, but I think it’s well worth the price. If you don’t find what you’re looking for there, you can always contact me at my website www.bklynsnc.com or just come visit to find out more about my work.

Students With Autism Learn How To Succeed

June 15, 2010 in Special Needs News by Admin Dawn

People with autism often have a hard time finding and keeping jobs, so more schools are creating programs to help students with autism get prepared for the workplace. One of those programs helped change the life of Kevin Sargeant.

Kevin, now 18, says his autism left him unable to handle the social interactions at school.

“I’d always have my head in my jacket and my hood up, and I wouldn’t want to talk to anybody just because I didn't know what they were going to do,” he says. “I’d always play with my Legos and, you know, I was rude all the time, and I had fits of anger and stuff like that — just because I didn’t understand people.”

Six years later, Kevin is a lot more social. He’s a good student. And he's working — as an intern in the IT department at the Parks & People Foundation. Kevin says computers are a good fit for him.

via Students With Autism Learn How To Succeed At Work : NPR. Read or listen to the whole story at their site.

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