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Avatar of Julia Roberts

by Julia Roberts

Anxiety; she never leaves.

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

Yesterday our son had a (new) kidney biopsy. New as in 5 years ago this coming March our son got a new kidney from a family friend (and skilled surgeons). We’ve been asking to try to remove prednisone from his anti-rejection drug cocktail for at least 4 years as we believe it has had a negative impact on his mental health.

Our daughter had a kidney transplant 2 years ago and since she is on a no steroid protocol – and doing well – so one doctor is willing to try to stop pred but only if we can prove the new kidney is okay. The biopsy is to rule out any underlying rejection of the transplanted kidney.

During any given procedure, surgery or lab draw, we can expect there to be a little anxiety by our son. First, we’re going into the hospital where nearly all his medical care has taken place. Second, it is certainly the place where he was awake during a surgery. Anxiety showed herself today, as proof is this picture. I’d finally gotten him to chew a washcloth instead of the latex gloves and tourniquet.

A different experience for us during this visit is that for the most part he was calm. In the past if he was anxious he was defiant, rude and he wandered and tried to distract us all from anything we were doing. This time I noticed instead of retreating from the situation he faced it bravely. I don’t just mean he sucked it up; I mean he talked about the awake surgery, he asked the nurse and doctors when he’d be asleep, and he triple checked when the doctor was marking where his kidney was that he wasn’t going to start the biopsy before he was asleep. “How will you know I’m asleep?” was a great question to the anesthesiologist. He didn’t need me to intervene, he just needed me to support him and confirm that he was doing the right thing by actively participating in his care.

Over the last year he’s been advocating more for himself in his health care and while it doesn’t surprise me because that is ultimately what I want and have been striving for, it is still surprising somehow. He’s been listening. All those times I questioned, pushed, cried, demanded in front of him may have had a two-fold purpose; both taking care of him and teaching him that control can help the anxiety.

He amazes me by just waking up and facing each day and yesterday was no exception. My 12-year-old was anxious but in control.

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Avatar of Admin Dawn

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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Avatar of Julia Roberts

by Julia Roberts

The New Year

January 5, 2011 in From Julia by Julia Roberts

I am not a fan of making New Year’s Resolutions. I think they put a lot pressure on us to achieve more, get more and do better.

I am a fan of those things but I really strive for that in my everyday life. I strive to be the best parent I can be to my kids who, frankly, need two kinds of parenting. I strive to be a better advocate for the kids and I am slowly trying to teach them to be their own in the world. I strive to be the partner I want my kids to have one day in their long-term relationships and I try to set a good example of a good friend.

If I’m honest, I also don’t want my kids to see me fail and be upset because I didn’t achieve a goal. I don’t mind them seeing me try and not reach a goal, but I don’t want to set it up so that every bit of my confidence hangs in the balance of achieving the ONE BIG GOAL. And that’s what I think can happen with New Year’s Resolutions; for me anyway. I think it’s the pressure that gets to me.

When I go to bed at night I think about what I want to do the next day and it always involves something to…

  • -          Help my kids reach their potential,
  • -          Teach my kids about advocacy and activism,
  • -          Be nice
  • -          And to make sure the people I love know it.

I don’t proclaim to know how every parent of special needs kids feel about resolutions. But I guess that some feel like they resolve to do things everyday like I do. So even though the New Year allows us to think about it as a fresh start, to me it really is just another day, another resolution.

How do you approach New Years? Official New Year’s resolutions or not?

Happy New Year! My wish is that 2011 is kind to all of us and if it’s not, my wish is that we will find the strength, perseverance and resolve to make it another day.

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Avatar of dianaglick

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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Avatar of Admin Dawn

by Admin Dawn

Disability Group Comes Out Against Restraint, Seclusion Bill

October 28, 2010 in Special Needs News by Admin Dawn

At least one disability advocacy group is now opposing a bill in Congress that they once championed after changes would allow restraint and seclusion to be included in students’ individualized education plans, or IEPs.

In an e-mail to members on Monday, the head of the Council of Parent Attorneys and Advocates, or COPAA – a 1,200 member organization of special education attorneys, advocates and parents — said the group opposes the legislation in its current form because of the IEP provision and would like members of Congress to reconsider.

“COPAA cannot support the current legislation because S.3895 permits restraint and locked seclusion as planned interventions in students’ education plans, including behavior plans and individualized education programs,” wrote the group’s executive director Denise Marshall. “By allowing restraint and locked seclusion as planned interventions, S.3895 weakens protections under the Individuals with Disabilities Education Act (IDEA) and legitimizes practices that the bill seeks to prevent.”

via Disability Group Comes Out Against Restraint, Seclusion Bill – Disability Scoop.

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Avatar of Admin Dawn

by Admin Dawn

Autism awareness still lacking at universities

October 26, 2010 in Special Needs News by Admin Dawn

If you ask people what autism is, chances are you will get a different response every time. The Autism Society of America states that it is a developmental disorder that appears within the first three years of life and affects the brain’s normal development of social and communication skills. No two people exhibit the same characteristics, which explains why it is called autism spectrum disorder.

The prevalence of autism spectrum disorder is on the rise, reaching one in 110 births according to the Autism Society. This shows that the problem increasingly needs to be addressed at all levels of society and especially in schools and colleges.

Many universities are already beginning to rethink their current support programs. The vast majority of the students on the spectrum admitted to universities have been diagnosed with Asperger’s Syndrome (AS), the highest-functioning form of autism. Typically, these students have average to above average IQs with deficits in three main areas: communication, social relationships and behavioral/emotional intelligence. They are exceedingly literal people, have difficulty understanding facial expressions and usually have trouble maintaining eye contact. Initiating conversations is generally a scary prospect for them.

The few autism support programs that exist at TU today still require these students to use what little self-advocacy they possess to inform their professors of their diagnosis. Students with AS can often dread holding this conversation and, not surprisingly, most never follow through.

Read more here: The Collegian Online: Autism awareness still lacking at schools.

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Avatar of Admin Dawn

by Admin Dawn

Celebrating The Coffee Klatch

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

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

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

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

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

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

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

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

What are your future goals for The Coffee Klatch?

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

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

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

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

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Avatar of Admin Dawn

by Admin Dawn

On living with autism: ‘I am comfortable with who I am’

October 15, 2010 in Special Needs News by Admin Dawn

Dora Raymaker, above, of Portland, Ore., offers an inside look at living with autism. She is a member of the Oregon Commission on Autism Spectrum Disorder, co-director of the Academic Autistic Spectrum Partnership in Research and Education (www.aaspire.org) and sits on the board of directors of the Autistic Self Advocacy Network (autisticadvocacy.org).

Read more here: On living with autism: ‘I am comfortable with who I am’ | The Salt Lake Tribune.

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Avatar of Admin Dawn

by Admin Dawn

MICHIGAN: Final autism hearing in senate

October 12, 2010 in Special Needs News by Admin Dawn

Advocates told a state Senate panel Tuesday that Michigan is heading for serious problems and expenses if it does not require insurance companies to cover autism treatment.

Lorri Unumb is with the advocacy group Autism Speaks, and is the mother of a 9-year-old child with autism. She told lawmakers that about 15-thousand children in Michigan have been diagnosed with autism, and that number is growing.

Read more here: MICHIGAN: Final autism hearing in senate (2010-10-06).

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Avatar of Admin Dawn

by Admin Dawn

New National Autism Clearinghouse In The Works

October 6, 2010 in Special Needs News by Admin Dawn

A handful of disability organizations are joining forces to establish a national resource center to assist people dealing with autism and other developmental disabilities.

The new initiative known as Autism NOW: The National Autism Resource and Information Center will be established by The Arc in collaboration with the Autistic Self Advocacy Network and Self Advocates Becoming Empowered with the help of $1.87 million awarded by the Department of Health and Human Services this week. Autism NOW will be tasked with helping people connect with services and interventions in their own communities.

Read more here: New National Autism Clearinghouse In The Works – Disability Scoop.

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