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How to make it through Spring Break without tearing your hair out

April 4, 2011 in Ask the Behaviorist, Featured, Insider Insight by Holly M. Adams M.Ed.

If spring break is bearing down on you, you might be thinking 5 more days of school and…THEN WHAT. Perhaps you are worried about the vacation to the beach you have planned with your family, or about the “staycation” you are planning. You and your child might even be using the week off to try some new therapies, or have a medical procedure that requires too much time off from school. Well I am here to tell you all of the above scenarios can be completed seamlessly, yes seamlessly, without meltdowns and tantrums using only a few simple tricks.

Trick number 1

Start talking to them about it NOW. Waiting until the weekend of the big trip does not allow your child enough time to process the information you are giving them.

Trick number 2

Peace comes in the details. If you are prepared, they will be prepared. Make sure you have thought through all of the activities you have planned and that you are taking or have access to all the necessary equipment. You have the ability to stop most anxiety outbursts by planning ahead and sharing the details with your child.

Trick number 3

A calendar can be your best friend. Use a weekly calendar with pictures to show your child what to expect each day. A calendar can also help them count down the days until they can return to school and see their friends.

Trick number 4

A stopwatch or a visual timer will help to make foreign transitions easier. There are a variety of timers that a can be downloaded onto almost any smart phone to help with transitions. ( I recommend Time Timer) Often on vacation, you are doing things that highly preferred and are followed by a non preferred activity. i.e. play in the ocean, then shower. A portable timer will help your child anticipate transitions and cut down on meltdowns.

A vacation is meant to be just that, a break from all the stresses of daily routines and structure. You only need to take a few tools from your daily life to make your vacation life fun and relaxing for everyone.

I have provided a social story to read with your child to prepare them. You can download it in PDF format by clicking here.

Wikki Stix Giveaway!

March 23, 2011 in Featured, Giveaways by Julia Roberts

I get a lot of press releases that come to Support for Special Needs.com because they may (or honestly may not and the press person is taking a long shot) be related to kids or special needs. I saw this one about Wikki Stix™ and had a flashback about them helping my son while he was fighting with anxiety.

I could tell you  what their press release said…”Wikki Stix, the first-ever line of colorful, moldable sticks that can be used to create anything a child can dream up.  Made and manufactured in the USA, the unique food grade, non-toxic wax and acrylic yarn formula was designed to stimulate a child’s imagination without parental concern over safety or clean-up.”

But I really want to tell you that they helped my son get through the day. We sent many packages to school with him to be pulled, bent, twisted and well, lost. Many, many packages because he isn’t so well organized. They are a little waxy and bendable and they offer hours of finger play to keep kids like my son occupied. For him it kept him from chewing his clothes or ripping up his shoes at school when it seemed he was most stressed out. Now that he’s gotten proper treatment for anxiety, we can play with them for how they were intended! Just for fun!

The press release continues to say “Simple to peel up and reposition, Wikki Stix foster a play environment that is mistake-proof and endless – there is no right or wrong way to play and the sky is the limit on what can be created.  If a child is not happy with the end result, simply unroll and start again.” I like that because my kids struggle with self-esteem and these aren’t hard to use with their abilities.

We’re giving away an activity set! Simply go to this topic in the Anything Goes Group and let us know what something your little one (or big one) busy when they (or we) need them to focus for a few minutes (or 15)!

We’re going to keep this open through Sunday, March 27 at midnight. Go! Share!

Wikki Stix products are sold at hundreds of retailers in every U.S. state and consumers can do a search by state on the website. The products are available internationally in Canada, Spain, Japan, Italy, England, Australia and France and online at www.wikkistix.com They do not contain lead, latex, peanut or nut oils. Unlike imitators in the marketplace, which are mostly made overseas, top-ranked Wikki Stix have always been proudly made in America.

 

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Welcome to New Members

March 11, 2011 in Around the Site, Featured by Admin Dawn

Gail Curran: Gail works at the Arizona Centers for Comprehensive Education and Life-Skills. Are you in Arizona? Look Gail up!

Achieve Beyond: Achieve Beyond specializes in nationwide pediatric therapy and autism services for children ages 5 and under including states like California, Illinois, New York, Virginia and Conencticut. Achieve Beyond uses a family focused approach in providing early intervention speech therapy, occupational therapy, physical therapy, ABA/autism therapy and psychological counseling. We strive to serve our patients and their families by providing services and evaluations support in their predominant language, at both the home and community settings. We also offer private pay / insurance services, educational workshops for parents and therapists as well as translation / interpretation services at several of our branches.

Denise Moberg: Retired from 30 years as an SLP in the public schools. Currently have a part time private practice.

Kyra: I am a stay at home mother of 4 kids. 2 are Special Needs. My 7 yr old has ADHD, Auditory Processing Disorder, Sensory Modulation Disorder, and Dyspraxia (the last 3 are very new to us). My 2 yr old has Apraxia and Sensory Modulation Disorder. My other 2 kids are just in special need of special attention. I am on a leave of absence from school right now so that I can get a better handle on my family and concentrate more on them than me.

Julie Fick: I am a full time mom to my son who has DiGeorge Syndrome. We live in Woodstock, GA.

Alisa Ricketts: I have been married for almost 20 years and I am a SAHM of two teenagers, one of whom is a special needs child.

Patricia: I have a 7 yr old with odd severe, conduct disorder, ocd tendencies, generalized anxiety disorder, separation anxiety disorder severe

Ayoca Freeman: I have two beautiful daughters; their ages are 8 and l year old. My oldest was blessed with an extra chromosome better known as Trisomy 21, one of the types of Down syndrome.

Jennifer McMahan: Mom to 2 beautiful daughters. The youngest one has Dravet Syndrome. I am actively involved as a volunteer in the IDEA League, the only organization that provides advocacy, support, education and research for Dravet Syndrome. Their website is http://www.Idea-League.org. It is my goal to help raise money for research as well as educate the public on this very rare syndrome.

Amanda L.: Mommylebron is the slightly diabolical leader of Lefam (just don’t tell LeDaddy, he thinks he’s the leader, riiight). She is a snarky & sweet mom on a mission! Once she attains her goal of world domination she will educate all its poeple on pediatric mental illness and erradicate stigma. All while wearing a really cute apron. This domestic diva, kitchen queen, laundress extraordinaire also enjoys writing, reading, movies, scrap booking, word puzzles, kiddie cuddles, wet kisses, big brown eyes……Oh, and, during her “on time” she molds the only-slightly-less-diabolical-minds of 4 year old’s (aka preschool teacher).

Stephanie LeMieux: I have a boy with HFA and Tourette’s

What’s happening around the community

March 4, 2011 in Around the Site, Featured by Admin Dawn

Remember tomorrow is our first ever In Real Life event but it won’t be our last! Our goal is to give you opportunities to build your support network on AND off-site. We are working on more events for laster this year so stay tuned!

March & April Book Club Book

We’re very proud to announce that we’ve chosen site member Suzanne Kamata‘s anthology Love You to Pieces: Creative Writers on Raising a Child with Special Needs.

The first collection of literary writing on raising a child with special needs, Love You to Pieces features caregivers’ perspectives at every stage in the lives of children with mental or physical difficulties, from premature birth to middle age. In this rich blend of short stories, essays, and poems, families cope with autism, deafness, muscular dystrophy, Down syndrome, other forms of retardation, and more, laying bare the moments of rage, disappointment, and guilt that can color their relationships. Parent-child communication can be a challenge at the best of times,b ut here we see the epic struggles and triumphs of those who speak their own language – or don’t speak at all – and those who love them dearly. Together, the authors paint a beautiful, wrenchingly honest portrait of what it means to care for a child who does not experience the world as we do.

We hope you will join us!

Welcome to our New Members

Aubrey L.: “I have a support group for others affected by premature birth (I was born three months premature) called www.precious-miracles.org as well as special needs (I work as a Care Aide within a school district). I want my website to be a place of support, encouraging words, a listening ear, a shoulder to lean on. Please visit my site to find out all the interesting offerings it has!”

Danielle: “I work in special education and am the proud mother of a child with special needs!”

Heather: “My daughter is 5 1/2 years old, and was diagnosed with CP around 10 months. It has been a long road and just intersted in meeting others with simillar life stories.”

Beth: “I am the very happy mom and 2 boys! Matthew is two and perfectly happy, healthy! Grant is going to be 1 in March and he is perfectly happy and for the most part healthy besides his CP he has! He is doing great and accomplishing so much! These boys bring so much joy to my life!”

Pat Boyle England: “Advocating for kids” and who blogs at septanorthbellmore.blogspot.com

Chaney who blogs at Here’s My Voice

Ann Rounseville: “I am currently a stay at home mom of an adorable 3.5 year old little boy who is diagnosed with PDD-NOS, Global Developmental Delay and Hypotonia. He is non-verbal but has the best belly laugh in the world! I am also expecting a baby in May. Life with our little guy has not been easy and I find meeting other parents of kids with special needs to be so very helpful and important!”

Jaymi Griesmeyer: “I am the mother of three amazing children. My oldest is 7, he is gifted and has generalized anxiety disorder. My second son is 6 and was born with a congenital heart defect and had open heart surgery when he was 5 days old. My youngest is a 3 year old girl who has epilepsy and developmental delays.”

Ginger Adams

Tisha Libbey: “i have a 5 yr old daughter with CP. she is legally blind, has a VP shunt and a G tube for all meals”

Kristy Allen: “Mom of son with developmental delay.”

Jenny: “I have mild Autism. I may even be Aspergers but I dunno. I have a little brother with sever Autism. I’m also a Christian. I’m a greatful believer and follower of Jesus Christ.” Jenny blogs at The World of Mismatched Socks

Deanne Webber: “I am the mom of 2 incredible children”

Have you added your blog yet?

There are lots of ways to help us discover your blog or website:

• You can add your blog feed to our site. Every time you update, we will pull in an excerpt and post it to our Blogging Our Lives Group. It will also show up in our activity feed that updates here and on our front page.

• You can add your blog address to your signature file on your profile.

• Next time you write a great blog post let us all know about it by sharing it as Community News. It will update to the Community News page and go out on our Twitter stream.

 

Adjustments in Special Needs

February 23, 2011 in Featured, From Julia by Julia Roberts

We’ve recently been trying to figure out what we’ll do with our son for 6th grade. Well, that’s not exactly true, we’ve been thinking about it for about a year. Sixth grade is still month away but with private schools needing to know by April 1ish we needed to start looking in January.

We have a good option for our public school. It’s large though. The director of special ed is a lovely woman who came to our elementary school to meet with us and discuss our son’s IEP/needs. She didn’t see any reason why they couldn’t serve him there. We also visited a private school (to the tune of $22,500/year) that is for students with learning differences. My son had a lot of anxiety over our discussions and it manifested itself in self hatred talk and thoughts of harming himself. It was with 100% certainty that I knew the root of the anxiety.

Anxiety is a tricky thing in our world. With delays, mental health issues and the fine balance of keeping things from exploding at any given time I thought it’d be good for get him over to the middle school to see what it was like. He was  resistant to going to a private school away from kids he’d know but after visiting the large school he’s open to another school choice. When we left the building he said, “No, it’s too confusing.” When I told him one of the schools we are looking at has just 8 kids in the 6th grade he smiled and said, “Yeah, I’d like a small class like that.”

He obviously needed to see it to adjust his thinking he had to go to the school where most of his friends will go. I still think he could but I’m not sure he’d flourish. He’d survive it but not without unique challenges of being different in a school of 400+ 6th graders. We’re still searching and I’m sure we’ll come up with something because we just will.

We’re a resourceful bunch, special needs parents are, aren’t we?

We have a world of adjustments we make from the second we hear of an issue/diagnosis to selecting where we’ll live to making decisions of what to push for and let go of with educators, friends and family. We’re constantly making adjustments. I know when you have kids you know you’ll have adjustments. Add in the special needs factor and it just makes things more complicated.

I am not sure when I realized my life would be about making adjustments about everything…including a style of parenting that isn’t necessarily 2nd nature, maybe a year into learning about the kids recessive polycystic kidney disease. When things are stable and moving along I forget the amount of adjustments we have to make nearly everyday. Adjustments have become so much a part of what I do, it hits me when we have a big adjustment.

Like middle school. Middle School + Special Needs = ADJUSTMENT. In a big way. I’m not ready for it but with special needs we don’t really have time to get ready, do we?

What’s your latest adjustment relating to special needs?

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.

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!

Assessments In the Driver’s Seat

November 3, 2010 in Ask the Special Ed Lawyer, Insider Insight by dianaglick

The most important thing to remember about assessments is that they not only determine eligibility — they also drive placement and services.

A good and appropriate initial assessment can be used by the IEP team to determine whether a child is eligible for special education. My prior articles have described the requirements for eligibility, in short: a qualifying disability and a showing that the disability interferes with a student’s ability to access his or her education. However, that initial assessment will also set the stage for the placement and services offered by the district. While the eligibility category (such as autism, specific learning disability, or a speech/language impairment) will signal the main interventions to be provided, an IEP should include services necessary to address all of your child’s areas of need.

For example, if a child is eligible for special education as a student with Other Health Impairment because of a diagnosis of ADHD, he should receive services designed specifically to address the challenges arising from attention deficit. However, it is possible that in the scope of the assessment, the evaluator also identifies some problems with social/emotional functioning, such as withdrawal, anxiety or depression. These issues should be addressed as well, usually by an initial offer of school-based counseling, or a social skills groups for students.

When Assessments Steer You Wrong

Clearly, when an assessment is used to conclude that a child is not eligible for special education or not eligible under a certain category that you may be seeking, this can be a frustrating setback in your advocacy efforts. However, the worst assessments are the ones that provide absolutely no useful information about a child. Even if you disagree with a particular recommendation or conclusion that the district may have drawn from an assessment, the data itself can still be very helpful in understanding your child’s educational strengths and deficits.

Some of the more common issues that that arise with assessments are when the district fails to use an appropriate testing instrument, fails to properly score a test, or fails to administer or conduct any testing in an area that is a known issue with the child. To expand upon the example above with the child who suffers from ADHD, if that child’s teachers have noted troubling behaviors in the classroom that they believe could be emotionally-based, or if his parents are raising concerns about his mental health status, this would be considered an additional area of suspected disability. When his triennial re-evaluation rolls around, the district should absolutely include some kind of assessment to address these concerns.

Federal law sets forth several requirements for evaluations, including that they be conducted at least every three years, but not more than once per year unless agreed upon by the IEP team. A full assessment should include a variety of testing instruments and tools, so as not to rely on a single measurement of a child’s ability. In addition, standardized tests should be administered in accordance with the publisher’s instructions by knowledgeable and qualified personnel, should be given in the language of the student and should not be racially or culturally discriminatory. One key requirement is that the child must be assessed in all areas of suspected disability.

Getting Back on Track

A major part of my practice involves helping parents navigate a situation in which their child has not been appropriately assessed. The law allows parents to obtain an independent educational evaluation (IEE) at public expense when they disagree with a district assessment. A key point to note: there generally must be an assessment with which to disagree. While there are exceptions to every rule, if the district simply fails to assess and you take them to court, they will likely be given an opportunity to conduct an evaluation before having to pay for a private one.

If you request an independent educational evaluation, federal regulations provide the district with two choices: they can either agree to your request or they can file for due process to establish that their assessment was appropriate. In most cases, the district will determine that it is more cost-effective to pay for an independent assessment than to incur the expense of a due process hearing against the parents. However, it is important to know that the district may file for due process in response to a request for an IEE.

Many times, a district will deny the parents the requested IEE, but fail to bring due process. In this situation, parents often seek out a private assessment themselves and then request that the district reimburse them. They may have to file for due process against the district in order to obtain this reimbursement.

If the district agrees to fund an IEE, parents should be given the opportunity to negotiate with them regarding the independent professional who will conduct the evaluation. It is important to go with an assessor who is truly independent of both the parents and the district so that all sides feel they are getting an objective opinion. Ask other parents in your community for references in order to identify the good assessors in your area.

Once an independent assessment has been conducted, the district should convene an IEP meeting to consider the results of that assessment. If the independent assessor draws different conclusions than the district, this may strengthen the parents’ argument for a particular category of eligibility, a particular placement or additional or different services. Parents may use the independent assessment in a due process hearing against the district to establish that the district’s assessment was inappropriate or that the child has been denied services because of the district’s failure to identify his or her needs.

While trying to obtain an appropriate assessment of your child can be a frustrating experience, the law has built in a mechanism for a second opinion, which in most cases I recommend pursuing. Having more information about the student’s strengths and deficits leads to better team decision-making, better educational planning and better outcomes for the child.

How Buzzy® came to be

August 24, 2010 in Insider Insight, Resources by Admin Dawn

Thanks so much for agreeing to kick off our advocacy week with the focus of pain management and how to advocate for our child. Please tell us about yourself and why pediatric pain management became your focus.

I am the Chief Executive Officer of MMJ Labs (named after my three children) and I invented Buzzy® after experiencing first-hand the indifference of the healthcare system to the pain and suffering of children. Buzzy grew from a desire to put inexpensive pain control in the hands of parents and patients.

After graduating from Yale University and Emory Medical School, I completed Pediatrics Residency and a Child Abuse Fellowship at Cincinnati Children’s Hospital, and Pediatric Emergency Medicine training at Children’s Hospital of The King’s Daughters in Virginia. I am the director of Emergency Research for Pediatric Emergency Medicine Associates at Children’s Healthcare of Atlanta, Scottish Rite, and a Clinical Associate Professor at Medical College of Georgia.

I always hated unnecessary pain or suffering during my training, and would get really irritated when residents or other doctors didn’t bother with pain medicine. I wanted to do research to show pain relief was important, but realized that decreasing pain wouldn’t change many people’s behaviors. If pain reduction helped the procedure or made them look better, doctors might care more, so I concentrated on research showing that pain relief improved the outcomes of procedures. Consequently, I studied anesthetics for spinal taps, and learned a lot about needle pain.

When my kids got old enough to remember I brought creams or distraction toys to lessen the impact of their shots. They were all really good shot takers until one nurse told my oldest out of nowhere, “You are going to sit still or this is really going to hurt and we will have to hold you down.” He did great for the shots but then threw up afterward and had been needle-phobic ever since. I was so mad at the system and myself for not being able to protect him that I wanted to come up with something that worked instantly that parents could bring and use even if the healthcare system wasn’t interested.

As a mom to 2 kids who’ve had hundreds of needle sticks, I’m fascinated by the product. Can you tell me a little bit about the development and technology and most importantly, why it works?

After my son had an adverse experience with immunizations when he was 4, I had intermittently tried to find a quick way to make it better. I was trying to reproduce the sensations that happen when you burn your hand and stick it under running water. The experiments included the whole family and got pretty messy! Believe it or not, the first effective prototype involved a vibrating personal massage motor and frozen peas. Science, innovation, and healthy vegetables against pain! After that we had help from a fantastic engineering undergraduate student who made my drawings three-dimensional, then the actual Buzzy was designed by Formation Design Group in Atlanta, Georgia.

Buzzy uses simple scientific principles to deliver natural pain relief. Buzzy’s combination of icy cold wings and a vibrating body confuses the body’s nerves to block sharp feelings, just like rubbing a bumped elbow helps stop the hurt, or cool running water soothes a burn.

Buzzy is a hand-held device, about the size of a computer mouse, which, through a combination of vibration and ice, minimizes pain from shots and other needle sticks like IV starts, blood draws and finger pricks. Buzzy uses the Gate of Pain Control (the vibration), coupled with the Descending Noxious Inhibitory Control (the ice), so the science is
pretty serious and very real, but the idea is really simple.

Buzzy works instantly, is reusable (eco-friendly, minimizes medical waste), FDA-compliant, and really affordable (available online at www.buzzy4shots.com for $34.95). Buzzy makes important and necessary medical visits and at-home regimens easier for the whole family.

We have presented data demonstrating that Buzzy decreases IV pain by half when used in older children (age 4+) for IV sticks. We know Buzzy is safe for infants, though we do not yet have the final data on how well it works. Babies still cry, even with numbing creams, so we are trying to see if the duration of crying is less. We have begun our research studies on shots for infants and children under age 4, so we should have some data soon. We know with certainty that children of any age can benefit from distraction during medical procedures, and our Bee-Stractors™ distraction cards are designed with age-specific questions to distract infants and children from the procedure.

Can you please provide some tips on how as parents/caregivers we can advocate for our kids in relation to their pain management?

In my research, I have found that needle pain has far-reaching adverse consequences for personal and public health. Although needle pain from a shot may not seem like a big deal, needle sticks are the most common and most feared cause of medical pain in the world. Though a shot may “only hurt for a second,” the impact for children can be a lifetime of needle phobia. As babies who are sensitized to needles grow up, they may avoid medical treatment, refuse to donate blood, or refuse flu shots due to fear of needle pain. When they have children, they may even be less likely to immunize their own children.

Children now get more than 20 needle sticks before they are two years old – and of course many more needle sticks are in store for children with special medical needs. Although the American Academy of Pediatrics recommends using pain control “whenever possible,” only 2.1 million of an estimated 18 million IV sticks each year are done with any sort of pain management. Only 6% of mothers report ever having even simple topical numbing creams used for their children’s shots. Buzzy puts a simple end to this inhumane incongruity between theory and practice.

Sadly, there are no global answers, but there are some general tricks of the trade you can try. Mind you, a bombastic “needle-wielding fiend” as my son says can undermine the best laid plains, but in general most pediatric practices will work with you.

For young children, pain is punishment and scary, so addressing fear is an important first step to making shots less of a big deal. Children are less fearful when they know what’s happening and feel in control. We see children crying and screaming as much from the cleaning swab as as from the poke that actually hurts. While the temperament of the child dictates just exactly how they will respond and the best way to prepare them, here are some general pointers:

  • When asked “am I going to get a shot?” focus on the benefit. “Yes, they have medicine that keeps you healthy.”
  • NEVER promise they won’t get a shot unless you intend to follow through and come back another time if they’re due for one.
  • NEVER threaten with a shot if children don’t behave.

Establishing a needle as punishment or you as untrustworthy will guarantee a bad experience. If the child’s question is, “Is it going to hurt?”, avoid using the words pain or hurt. Instead, use the word “bother”, and answer this way: “Actually, a lot of kids aren’t that bothered by shots. Before you get them, I’ll show you how we will make getting them not a big deal.” If they’ve had a bad experience in the past, say “I found out about some new cool things we can do to make them much more comfortable.”

OK, you’ve modulated the anxiety in your child, now how do you deliver on your promise? Parental behaviors, positions of comfort, topical anesthetics, distraction, and using the body’s own nerves have all been proven to reduce distress for children getting shots.

First, relieving kids’ distress begins with you. Research shows that up to 50% of a child’s reaction to needles is predicted by how the parents behave and what words are used. The best combination is warm but firm. No apologizing, empathizing, or letting them “just go to the bathroom real quick.” Instead, use praise, “I know you can do this”, and direct them to pay attention to non-shot related things before they get anxious. More on that to come.

Second, the person giving the shots can help.

These are research-proven principles that make shots hurt less:

  • Give the least painful shot first
  • Give the shots sitting up in the arm after age 18 months
  • Use a slower push
  • Use a longer needle
  • Use “position of comfort”: facing you on your lap, or with your arm around the child if they are older and receiving shots sitting up. Being held flat is the most vulnerable positing you can be in; much better if 4-6 year-olds can straddle your lap facing you and get shots while you hug them.

Third, to help overcome established needle-phobia, there are creams (over the counter LMX-4, Ferndale Labs) which can be applied 20 minutes in advance, or prescription EMLA (Astra-Zeneca) which needs at least an hour. Be sure they’re placed correctly, and know that they only numb the surface. Never promise complete pain relief, or a child may focus on the pain to try to prove you wrong. “I told you so” is an immensely satisfying accusation after being subjected to something unwanted in the first place. “These will help a LOT!” you say.

Studies show that appropriate distraction decreases distress. While the nurse is getting the injections, let a child choose from multiple visual games or tasks to focus elsewhere during the shot. “Do you want me to read to you, or give you things to find?” Where’s Waldo books, counting and popping bubbles, or blowing a pinwheel are all good choices. Finding and counting work even for adults. Be prepared to choose if they’re indecisive. “You know what I think would be good? Let’s do this . . . ” One option is to ask questions on the back of commercial Bee-Stractor distraction cards (buzzy4shots.com) while the child looks at the pictures on the front. “Which two monkeys look the same? Can you find all 6 apples?”

Tasks that include a sensation also help focus attention away from the poke: for example, tell your child to count zigzags as you scratch the edge of a fingernail on their arm. Tell the child to yell “now!” when a distraction card or fingernail gets to the elbow or wrist. For multiple shots or a seriously anxious child, bring an ice pack or vibrating toy to touch other body parts and have the child name the body part touched by ice. “Knee! Leg! Nose!” Even better, touch them with an ice pop and 5 right answers wins the pop!

Whatever happens, praise how your child did!

In closing, is there anything else you’d like to share with our readers?

As a needle pain researcher it is incredible to me that no one even talks about the issue of needle pain management in the treatment of chronic conditions, including diabetes and so many other frequent-stick illnesses. Here at Buzzy, we believe passionately that no one should be expected to simply tolerate needless needle pain. We have been so gratified by stories of kids who initially are addicted to their Buzzy but then reach place where they can handle the sticks, eventually using Buzzy only for pump changes and ultimately giving their Buzzy to someone else who was recently diagnosed.

We have recently received a grant from the National Institutes of Health, which funds our ongoing research of needle pain relief in children. We are constantly working to improve Buzzy and the world of pain management. We donate $1 from the sale of every Buzzy to the Child Life Council, which serves child life professionals as they empower children and families to master challenging life events. I encourage you to visit our interactive website, where you can leave a comment or send me a question at “Ask Dr. Amy.”

Antidepressants Not Recommended for Autism

August 9, 2010 in Special Needs News by Admin Dawn

Selective serotonin reuptake inhibitors (SSRIs) can’t be recommended for treating autism in children or adults at this point, according to a Cochrane review.

The antidepressants have shown emerging evidence of harm without any benefit in pediatric cases, reported Katrina Williams, PhD, of the University of New South Wales and Sydney Children’s Hospital in Sydney, Australia, and colleagues in the Cochrane Library.

In adult cases, two small studies have shown improvements in overall symptoms and obsessive-compulsive behavior along with aggression in one and anxiety in the other.

However, this limited evidence in adults is not yet sufficiently robust for clinicians to rely on, Williams’ group cautioned.

via Medical News: Antidepressants Not Recommended for Autism – in Pediatrics, Autism from MedPage Today.

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