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by Julia Roberts

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

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by Julia Roberts

My Great Story Campaign for Mother’s Day

May 8, 2011 in Featured, Featured Group, From Julia by Julia Roberts

A Forum to Share Her Story

NDSS & The My Great Story Campaign join together to raise awareness for Down syndrome in celebration of Mother’s Day.

Today, Mother’s Day 2011, the National Down Syndrome Society (NDSS) will celebrate the accomplishments and achievements being made by people with Down syndrome by honoring their mothers. The My Great Story (MGS) public awareness campaign seeks to ignite a new way of thinking about people with Down syndrome by collecting inspirational stories told by people with Down syndrome and their family members, friends, colleagues, and many others. NDSS has added a new section in honor of Mother’s Day. Participants share a story about their mothers, grandmothers, sisters, aunts, cousins or friends who have a son or daughter with Down syndrome. Anyone can comment or vote on the stories already in the collection. NDSS invites you to cover the MGS campaign, post, tweet and blog about it, and promote reposting, retweeting and more sharing amongst your audience.

NDSS also invites you to watch the two MGS Celebrity PSAsthat star TV Hosts Meredith Vieira and Nancy O’Dell and post them to your media outlet’s website. Vieira’s dedication to the MGS campaign stems from her relationship with her son, who has worked as a camp counselor for people with Down syndrome, and O’Dell was drawn to campaign through her fond memories of her mother’s sister, who had Down syndrome. Both Vieira and O’Dell have also submitted stories to the campaign that speak to their experiences.

Down syndrome is the most commonly occurring genetic condition, in which the individual has a third copy of the twenty-first chromosome. One in every 691live births is a baby born with Down syndrome, and it is the most commonly occurring chromosomal condition. People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

People with Down syndrome are living longer than ever before. The life expectancy of individuals with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today. Children with Down syndrome are often fully included in social and educational settings and increasingly go on to graduate high school and attend postsecondary education programs. While placement in the workforce remains a struggle, the situation has improved and adults with Down syndrome have attained a variety of positions, bringing enthusiasm, reliability and dedication to their jobs.

We encourage you to get involved and help NDSS and mothers of people with Down syndrome everywhere to raise awareness for people with Down syndrome.

About My Great Story

MGS was created pro-bono by NY based Ad Agency, Pedone. After 14 months of market analysis the Pedone team developed a campaign in an effort to shape the future for all people with Down syndrome. The online story book was developed by CT based Interactive Agency York and Chapel, who spent over 12 months developing the user friendly technology, sophisticated design and esthetics, and incorporation of the spectacular print ads shot by Zachary Scott. To date, over $5 million has been donated in national and regional ad space and services. The campaign has been seen by over 175 million people across the country and featured in media outlets such as Allure, Fortune, Golf Digest, The New Yorker, Newsweek, Time, Vogue and Wired, among other noteworthy outlets. To learn more, visit www.ndss.org/stories. 

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community. NDSS has over 350 affiliates nationwide. To learn more, visit www.ndss.org.

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by Admin Dawn

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

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by dianaglick

Wading Through the Alphabet Soup: An Introduction to Federal Special Education Law

December 11, 2010 in Ask the Special Ed Lawyer by dianaglick

One of the first things I explain to clients during an initial intake appointment is the basic federal standard for educating students with disabilities. This is frequently referred to as the “alphabet soup” of special education: the IDEA mandates that schools provide FAPE in the LRE according to the child’s IEP. Keeping in mind that talking in acronyms is just job security for attorneys, let’s break it down:

IDEA = Individuals with Disabilities Education Act

This is the federal law ensuring that special education services are provided to children with one or more qualifying disabilities, whose disability interferes with their ability to receive an education. The IDEA originated in 1975 under President Ford and has been reauthorized and changed several times, most recently in 2004. While the IDEA is federal law and applies to all public school children in the country, each state also has its own education laws that may be slightly different than the federal requirements; states may provide more protections than those available under federal law, but may not provide fewer or less than the federal standard.

FAPE = Free Appropriate Public Education

The IDEA defines a free appropriate public education as special education and related services that are provided at no cost to parents and are in accordance with the child’s Individualized Education Plan (IEP), among other requirements. 20 U.S.C. 1401(9) (2009). The majority of legal disputes are about the meaning of “appropriate” for a child’s particular circumstances. In 1982, the Supreme Court issued a decision in Board of Education v. Rowley, which provides a working definition of FAPE as “a basic floor of opportunity” providing “some educational benefit.” Bd. of Education v. Rowley, 458 U.S. 176, 200 (1982).

What does “a basic floor of opportunity” mean in real terms? Because children who are eligible for special education have such a wide range of disabilities and needs, it cannot be defined as a specific set of services. However, most children who have passing grades or are making progress towards their IEP goals will be found to have received a basic floor of opportunity.

LRE = Least Restrictive Environment

This is one of the major improvements that the IDEA has made for students with disabilities. No longer does the law allow disabled children to be warehoused or educated exclusively in a special education setting, as long as their IEPs indicate some mainstream time during the school day. The LRE requirement has led to better outcomes, both academically and socially, for disabled students. It can also be a double-edged sword in some instances when parents are seeking a more restrictive environment for their child.

IEP = Individualized Education Plan

All students who are eligible for special education are to receive services in accordance with an IEP, which must be developed to meet the child’s individual needs. Those of you who already have some experience with special education have probably spent many hours at IEP meetings and have a sense of what they entail. We will talk more about IEPs in future columns.

I am excited to be included in this new community of families supporting children with special needs and look forward to sharing more of the legal perspective with you all. In future columns, I will address such topics as the difference between IEPs and 504 plans, discipline issues, assessments, the fair hearing process, private placements and knowing when to seek out legal help, among others.

We are also interested in hearing from you! Feel free to suggest topics for further discussion; just keep in mind that I cannot provide legal advice for your specific situation.

Author Diana B. Glick

Disclaimer:

This column reflects the views of Diana B. Glick in her individual capacity. It does not necessarily represent the views of her law firm or her clients, and is not sponsored or endorsed by them. The purpose of this column is to assist in dissemination of information about federal special education law, but no representation is made about the accuracy of the information. The information contained in this column is provided only as general information for education purposes, and topics may or may not be updated subsequent to their initial posting.

By using this column you understand that this information is not provided in the course of an attorney-client relationship and is not intended to constitute legal advice. This blog site should not be used as a substitute for competent legal advice from a licensed attorney in your state. This column is not intended to be advertising and Diana B. Glick does not seek to represent anyone desiring representation based upon viewing this blog site in a state where this blog site fails to comply with all laws and ethical rules of that state.

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by dianaglick

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.

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by Admin Dawn

This week around the community

October 29, 2010 in Around the Site by Admin Dawn

Our big news this week is that we changed servers! It was a HUGE move (this is a huge complicated installation) and we’re still squashing bugs but we did it because we are growing so quickly and we needed a stronger server to bolster us up. Our goal was to get the move done before November 1st since we are launching our first annual Great Big Wish List Giveaway on November 8th! On Monday we will have a schedule and a list of the toys we’re giving away. It’s going to be huge, people!

Meanwhile, if you do find bugs as you are getting around the site, please let me know.

Welcome to New Members

Jeff Stimpson: I speak and write about autism parenting (my son Alex, 12, is PDD-NOS). Twitter name is Jeffslife, and I have two books about my son: “Alex: The Fathering of a Preemie” (at Amazon and from academychicago.com) and “Alex the Boy: Episodes From A Family’s Life With Autism” (available at vervante.com).

Nick: I serve many parents of children with disabilities. I have cerebral palsy myself as well as my fiance. I have been an activist in Berkeley for many years. I have a degree in Social Welfare and a minor in education.

JerseyMilo9

Paula

Mireya Teran: i am a wife and mother of three blessings. i love god and love helping people!

Melanie Adams

Paul: Father of a special needs daughter born with a heart defect, caudal regression, and Pierre Robin, among other things.

James

Community Happenings

We want to thank member Janet Callahan for writing We Live This Life to Experience It about how her Paganism has impacted her experience as a mother to a child with special needs for our Faith series. Do you want to share your story of faith and special needs with us? We would love to hear it and share it with the community!

Nick is looking for feedback for his Dare to Dream project in the group Anything Goes. Check out the documents he uploaded and let him know what you think in this thread.

Andy has a challenge for you in Anything Goes — anyone know where she can get one of those nutcrackers like the one in the ballet that actually cracks nuts? She’s seen them for show but she wants one that works! If you know where she can find one, head over there and let her know.

Julia started the topic Celebrations in Behavior over in the Behavior Issues group. We really want to hear any bragging you want to do on your kid and on YOU!

Michelle Howard posted a terrific list she calls The Somewhat Humorous but Mostly Helpful Hospital Away from Home Checklist over in Organizing … Specialized. Check it out!

Beth started a new group, Down Syndrome Awareness and added her blog feed, Our Typical Life, to the group. Wondering how you can do that? Here are instructions.

Did you catch the Calm Mornings post over in Celebrate Calm? It’s a can’t miss post!

November is National Adoption Month and we have a Special Needs Adoption group. Andy wanted to let folks know about the Open Adoption Roundtable post, which is about Siblings in Adoption.

Our activity stream is a great way to stay up to date on what’s happening all around the site but it can be confusing especially with people’s Twitter posts keeping thing busy there. But you can filter posts by using the drop down menu on the right. It allows you to see only certain kinds of activity like blog posts, forum topics or group updates.

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by Admin Dawn

Celebrating The Coffee Klatch

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

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

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

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

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

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

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

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

What are your future goals for The Coffee Klatch?

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

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

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

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

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by Dr. Tiffany Showalter

Yoga doesn’t have to be a four letter word

October 13, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

I will be the first to admit that I am not a fan of yoga.  I remember in OT school learning how to use “alternative” activities to assist patients with life threatening, progressive illnesses.  How through breathing, meditation, and control over your body, one could lessen their pain and help improve their overall function for persons suffering from Cancer for example.

We were actually required to take a brief course every Tuesday and Thursday for an hour during an 8 week period so we too could experience what some of our patients might be doing.  Our instructor was a former physics instructor of mine, Sigfried Blair, who reminded me of Gumby with an afro.  Not the best start, I’ll admit, but I digress.  For three weeks, I remember hearing “clear your mind, breathe, and let your body be one with the movement”.  Those who know me can sympathize that I have never been a “clear your mind type of person” and hearing those words really stressed me out.  I am a multi-tasker and proud to claim my “gift”.

I left each session with a migraine headache and set out to find a way out of there.  I easily obtained a permission slip from a doctor who said my headaches and stress were a direct result of these yoga sessions and for medical reasons I should be excused.  See, you can get a doctor to say about anything!

Last year I attended a continuing education conference entitled, “Motor Coordination Disorders:  Impact on Education” where one of the treatments investigated was using yoga to facilitate motor coordination.  The speaker showed us some cute programs with color coded cards and child friendly activities.  I thought I might give yoga another try.

I have since come to accept that even though yoga is not for me, it is definitely for some of the children I serve.  Yoga teaches children to breathe effectively which can improve concentration, learning, and vocal support.  It can also help with self-regulation.

Moreover, yoga encourages body awareness.  Most yoga programs for children focus on slow controlled body movements which require a body awareness of what the muscles are doing as they practice assuming different postures.  It can also help with strengthening, range of motion, and flexibility.  Finally, yoga may help children learn to grade their movements since many of the poses require children to hold at the midrange.

So, yoga may not be for me, but it might be a great activity for your kids.  Give it a try and let me know how it goes.

Disclaimer:  I hope you enjoyed reading this article.  Please remember you are reading this information of your own free will and are taking the information at your own risk.  The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent.  This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

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by Julia Roberts

Community, Inside and Out

September 15, 2010 in From Julia by Julia Roberts

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

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

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

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

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

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

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

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

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by dianaglick

What Your Future Attorney Will Want to See

September 9, 2010 in Ask the Special Ed Lawyer, Insider Insight by dianaglick

Mom and SonThis is a rather cynical title. But, in case you ever need to seek the advice of an attorney or bring litigation against the school district over your child’s special education program, there are certain documents that you will want to be able to locate and present to an attorney. On a less cynical note, it’s always good to have an organized binder with your child’s important documentation. There are professional organizers who comment on this blog about organizing your life when you have a child with special needs and nothing in this column should be construed as going against their advice. This is more of an attempt to piggy-back on the concept of organization from a legal perspective.

Some of my clients have saved every scrap of paper related to their child, but somewhere along the way became completely overwhelmed with trying to keep it all sorted. I can sympathize with this—you start by throwing a few IEPs in a folder, they multiply when you’re not looking, and suddenly you have paper coming out your ears and no sense of how to organize it.

What to Save

My recommendation is to save the following for the duration of your child’s K-12 education:

* Official report cards and progress reports (computer printouts from online grade programs can also be helpful if you regularly consult these services for updates on your child)
* Assessment Plans
* IEPs
* Assessments
* Written communication with the school or school district (including emails)

Other items of that may or may not be important, depending on the case:

* Notices of Meeting—only if the District is continually canceling meetings on you, or has a habit of convening meetings with very little notice. If you have regular, timely meetings, a notice of meeting itself is not going to be important.
* Procedural Safeguards—Districts are required by law to provide you a copy of these and some people have enough for several bird cages. I do advise parents to read these and ask questions about anything that is unclear. However, as long as you have a recent copy from the District, there is no need to continue accumulating them. Sometimes, you can even save a tree and decline them at the IEP meeting. Just remember that you will be held to knowing and understanding your rights whether you accept or decline a copy.
* Mental Health records—including progress notes from treatment, any Discharge Summaries if your child has experienced a psychiatric hospitalization, and statements, receipts and cancelled checks for your out-of-pocket expenses.
* Record of any outside services—if you seek out private tutoring or educational services for your child, keep a record of the services received, including any pre-tests or progress summaries, as well as statements, receipts and cancelled checks.

How to Save It

A simple three-ring binder with tabs separating out the school years is great way to keep your documents organized. Within the section for each school year, you can group the documents as I’ve outlined above (assessments, IEPs, report cards, etc.). Another alternative is to have a separate binder for each group of documents and then organize them according to date within each binder. Either one of these solutions will work well over the long term and will allow you easy access to documents as you need them.

What to Bring to an Intake Meeting

Special education lawsuits have a two-year statute of limitations, unless your state law specifies a different time period. State statutes of limitations prevail over the federal two-year statute and there are states with longer and shorter timeframes. California’s statute of limitations is two years, so in most cases, our office wants to see all the documentation described above from the last three school years—documents from the period covered by the statute of limitations, plus one year before that. This allows us to see what services were in place when the statute of limitations began and will usually allow us to see a triennial assessment and review.

If your attorney suspects that you have a case for pleading additional school years outside of the statute of limitations, he or she can ask for additional documentation from you and from the school district.

Disclaimer:

This column reflects the views of Diana B. Glick in her individual capacity. It does not necessarily represent the views of her law firm or her clients, and is not sponsored or endorsed by them. The purpose of this column is to assist in dissemination of information about federal special education law, but no representation is made about the accuracy of the information. The information contained in this column is provided only as general information for education purposes, and topics may or may not be updated subsequent to their initial posting.

By using this column you understand that this information is not provided in the course of an attorney-client relationship and is not intended to constitute legal advice. This blog site should not be used as a substitute for competent legal advice from a licensed attorney in your state. This column is not intended to be advertising and Diana B. Glick does not seek to represent anyone desiring representation based upon viewing this blog site in a state where this blog site fails to comply with all laws and ethical rules of that state.

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