This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Showing posts with label Hyperlexia. Show all posts
Showing posts with label Hyperlexia. Show all posts

Thursday, March 23, 2023

Advocacy and Support Organizations

American Partnership for Eosinophilic Disorders (APFED) Working diligently to advocate for increased funding, state and federal legislation, and medical coding to benefit those affected by eosinophilic disease 

American Porphyria Foundation

Mast Cell Action was founded in 2016 to offer support to the mast cell disease community, their families, doctors and researchers. To raise awareness of disorders resulting from mast cell activation, increase vital research in this area and strive for better diagnostics and treatment.
 
The Mastocytosis Society is a non-profit organization dedicated to supporting patients affected by Mastocytosis and Mast Cell Activation Disorders as well as their families, caregivers and physicians through research, education and advocacy.

MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease.

MPN (Myeloproliferative Neoplasms) Research Foundation 

The Oley Foundation Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.

PACIFHAN (Patient Organizations for Chronic Intestinal Failure and Home Artificial Nutrition)
To work together to promote the international sharing of information and resources to improve the quality of life of Home Artificial Nutrition patients.

National Organization for Albinism and Hypopigmentation (NOAH)

National Organization for Rare Disorders (NORD)

The Ehlers-Danlos Society

 
Change the Air Foundation
Dedicated to increasing awareness and research regarding the negative health impacts of indoor air quality, often as a result of water damage and mold.


 
 



Dysautonomia Foundation, Inc.

Digestive Disease National Coalition

Adrenal Insufficiency United

Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT)

Immune Deficiency Foundation

International Foundation for Functional Gastrointestinal Disorders


Kyphoscoliotic Heart Disease

American Porphyria Foundation

American Thoracic Society

American Society of Gene & Cell Therapy (ASGCT)

Daybreak Children's Rare Disease Fund

Family Caregiver Alliance

Healing Hugs Haven LLC

Hermansky-Pudlak Syndrome Network

Hope for Hypothalamic Hamartomas



 The Myelin Project
Myocarditis Foundation

 


Rare and Undiagnosed Network (RUN)

Spinal CSF Leak Foundation


Vasculitis Foundation

Wilhelm Foundation - the Undiagnosed

Worldwide Syringomyelia & Chiari Task Force

Research!America


 

Sunday, March 25, 2018

Resources and Information About Giftedness in Students and Adults

This is a list of links to resources and other things of interest to families with gifted individuals.  Many people with disabilities are also gifted, for which the term is 2E for "twice exceptional".  Finding appropriate educational placements is often already difficult for a child with Autism or any number of other "learning disabilities" but when you add in giftedness it can become almost impossible to find placements that are appropriate and work well.  Families often find that they need to be creative in putting together the pieces of their child's educational plan.

GENERAL:
Gifted Development Center (GDC) "Since 1979, the Gifted Development Center (GDC) has served as a global leader in the assessment and development of gifted individuals of all ages. We support giftedness throughout the lifespan. Through our work, we have changed the lives of over 6,000 children and their families worldwide. We also build awareness and understanding of giftedness, through research, advocacy and development of national policy.

Our philosophy is child-centered: we put your child first. We focus on understanding your child’s inner world (overexcitabilities, emotions, perceptions, relationships, personality, etc.), rather than on his or her potential for success. We see giftedness as a pervasive way of being in the world, not as being "gifted in...."

We provide assessment, advocacy, counseling, books, articles, Advanced Development Journal, and a Speakers Bureau to educate the public about the needs of gifted children and adults."



EVALUATION and EDUCATIONAL RESOURCES:
Hoagies’ Gifted Education Page
Gifted and Talented .com (Stanford program)
Gifted Homeschoolers Forum
WHAT IS GIFTEDNESS, AND WHAT ARE GIFTED PEOPLE LIKE?
What is Giftedness? (from the website of GDC)
The Sad Tale of William James Sidis - The Smartest Man Who Ever Lived 

Sunday, August 14, 2011

Early Reading- A Great Idea?

The form of autism that Roo has is called Hyperlexia.  He taught himself to read before he could talk.  Hyperlexia is not exactly as it is often described online, by "experts" who do not live with our kids.  It is more than just a splinter skill that is nothing more than decoding with no comprehension at all.  I will describe it more fully in another post, but for now what is relevant is that it often leads to very, very early and advanced reading ability.  For kids with Hyperlexia, reading comes naturally while oral language is a struggle to learn, in reverse of the usual experience in which children learn to talk as part of their natural development but most work to learn to read.  Roo could read before he began to speak again at the age of 3.5 years.  We know he was reading because he could play a memory game that involved matching pictures to the word for the picture.  There were other signs as well, but that was the most irrefutable one.  Hyperlexia is also on the autism spectrum and as such involves a significant social delay as well.

On the surface, Hyperlexia hardly sounds like a disability given the emphasis our society places on early academic achievement.  Our society is preoccupied with the early childhood years- even the first year- as preparation to "get ahead" in academics later on.  Letters and numbers decorate so many baby and child items (you don't realize how many until you have a child who is obsessed with them), and parents are forever pointing to the letters and making their sounds.  Most people don't  bat an eye or even notice this but I could not help but see it.  Why?  Because I am the mother of a child who read very very early, and is very advanced in reading ability.  By the time he was 5 or 6 Roo could read anything you put in front of him.  He struggled to interact with other kids in even a basic way or to express his basic needs.  Reading ability is not the ticket to a happy and fulfilling life- not in the way that interpersonal skills are.  When I see mothers of babies hold up block after block repeating the name of the letter pictured while the baby tried to make eye contact and giggle, all I can think of is what I would have given for Roo to have done that.  I want to shake those mothers and tell them that games of peek-a-boo, and giggles, and bonding ARE the "work" of babies, not reading.  Reading comes in time once the more important basics of social interaction are learned.  The early reading is no prize when it comes at the cost of social connection.

For a long time I've struggled to put into words how I feel when I see people place academic interaction above social interaction with young kids, but I recently came across an article in Psychology Today that said exactly what I had wanted to say. Here is a quote from the author, speaking about her counseling clients, that says what I have wanted to say myself:

"It's the "other stuff" of life that eludes them -- loving and being loved, balancing their lives, managing their emotions, living a life of meaning and depth. Almost without exception, their early experiences of connection with their parents -- their attachment -- looms large in how they got here.

What does this have to do with babies and reading, and those horrendous advertisements for teaching your baby to read?
  
First and foremost: The fundamental task of early childhood isn't learning to read, or to "get ahead" for school, or to impress the neighbors, or to give the folks something to brag about. Encouraging children to surge ahead beyond their real developmental needs leaves them with some really sludgy clean-up to grapple with later on.

The most important task of early childhood is experiencing a healthy, secure attachment in which the child's caregivers are attuned to the child's inner state and respond in a contingent manner.Let me say that again. What kids need from the get-go is a parent who "gets" them, who pays attention to what's going on inside them, and who responds to them in a way that's actually related to what the kid is feeling.  Healthy, secure, attuned attachment gives kids some much deeper "advantages" in life than whether they learn to read early."

The quote above is talking about pushing babies and children beyond their natural developmental paths and time frames.  Some children, like Roo, are developmentally ready to read very young.  When this happens it is not something that was taught or demanded of the child, it happened because the child was ready.  I am not discouraging that at all, and we were quite grateful for Roo's reading as it was our bridge of communication for a long time.  I'm just saying that it is not so wonderful that the natural work of babies- to connect and form the basis of a healthy emotional and social existence- should be sacrificed to achieve it.