Category Archives: Family matters

What do Teachers Need to Know?

This year, I 978-1-55766-710-6am working with my co-editors (Fred Orelove & Donna Gilles) on the 5th edition of Educating Children with Severe and Multiple Disabilities. Our first edition came out in 1987 and the book has been used to train about 50,000 teachers and other professionals over the years. The publisher, Brookes Publishing Co., has agreed that my share of the royalties will be paid directly to the MECP2 Duplication Syndrome Fund at the Rett Syndrome Research Trust. It won’t be a lot, but it will provide a few extra dollars in the coming years.

More importantly, there is another reason Continue reading

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Video: MECP2 Duplication and Hope for Families

This 5-minuted video from Joseph Mendoza does a superb job of telling the story of children and adults with MECP2 Duplication Syndrome and their families.

Andrew Solomon on Parents of Children with Severe Disabilities

I am sorry that I have been neglecting this blog. I’ve just been trying to balance too many things. This excellent video from Andrew Solomon is definitely something that parents of children with severe disabilities need to access.,,, and it inspired me to try to catch up. See previous post on his book, Far From the Tree, for more on the book this is based upon.

2014 New Years Message for Families

envelopeThank you to all the families of individuals with MECP2 Duplication Syndrome that have made the effort to communicate with and support other families.

Thank you to all the families of individuals with MECP2 Duplication Syndrome that have worked so diligently to spread public and professional awareness of the syndrome. Continue reading

Finding a cure – Rett Syndrome and MECP2 Disorders

Another new short video from Joseph Mendoza makes the case for joining research efforts on MECP2 Duplication Syndrome, Rett syndrome, and other MECP2-related disorders.

Continue reading

MECP2 Duplication Syndrome and Social Security Disability

lightbulbFamilies of individuals with MECP2 Duplications Syndrome in the USA should be aware that MECP2 Duplication Syndrome is one of that conditions that qualifies individuals for the Social Security Administration’s Compassionate Allowances program. Applying under this program may simplify and a shorten  the application process.

SSA’s information on MECP2 Duplication Syndrome can be found at this link.More information on the Compassionate Allowances Program can be found here.

 

Levon’s Light

Joe Mendoza’s excellent 5-minute trailer tells the story of his son Levon who has MECP2 Duplication Syndrome and his family.

Great work by everyone involved! Looking forward to the full-version.

Director, Joseph Mendoza
Editor, Jenn Dorn
DP, Donavan Sell
Producer, Michael MacDonald

Far From the Tree

FFTTJust a week ago, I posted an entry on the Agony and Ecstasy of parenting a child with severe and multiple disabilities. The next day, a friend was telling me about a remarkable interview he heard on CBC radio with Andre Solomon, author of Far From the Tree: Parents, Children and the Search for Identity, that dealt with some of the same things. I was interested enough to check out one of many interviews with Solomon on the the internet, and I was 50 impressed with the interview that I bought the 996-page book.

Since this book has been a best seller for about a year now, I am a little embarrassed that I am just hearing about it. I haven’t finished it yet, but I have read enough to say that it is truly wonderful and important reading for anyone who wants to understand parents of children with intensive needs or any parent whose child is exceptional in some significant way Continue reading

Amelia Rivera Receives Kidney Transplant

Amelia Rivera is home after receiving a kidney transplant. According to USA Today the surgery was done at Children’s Hospital of Philadelphia, where her family previously complained she had previously been denied being considered for a transplant because of her intellectual disability due to Wolf-Hirschorn syndrome. The surgery took place July 3, 2013. Continue reading

The Agony and the Ecstasy of Parenting a Child with Intensive Needs

ristina2 This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways. Continue reading