YOUR DAUGHTER HAS BEEN DIAGNOSED WITH RETT SYNDROME by Kim Isaac Greenblatt, Copyright 2005 Kim Isaac Greenblatt. Available for ordering through your local bookstores, Barnes and Noble, Amazon.com, Amazon.co.uk and the publisher.
This book is a first-strike, no-nonsense, first person perspective of dealing with the diagnosis of Rett Syndrome, coping mechanisms and information about connecting to the Rett Syndrome community.
***** PART OF ALL SALES GO TO RETT SYNDROME RESEARCH.*****
Publisher: Kim Greenblatt
ISBN Complete: 0-9777282-0-X
116 Pages US $20
Title: Your Daughter Has Been Diagnosed With Rett Syndrome
U.S. VISITORS to this site can order the book from the publisher on the link below :
The book can also be ordered in the U.S. at Amazon or Barnes and Noble.
UK VISITORS can order the book through Amazon UK on the web.
VISITORS from other countries please order through either Amazon, Amazon UK, or Barnes and Noble.
Welcome! If either you or somebody you know has received a diagnosis of Rett Syndrome, you've come to the right place. The book, "Your Daughter Has Been Diagnosed With Rett Syndrome", offers common sense, practical and informative observations of how one family dealt with (and is still dealing with) a diagnosis of Rett Syndrome. The book is a great introduction tool for relatives, medical professionals and concerned friends who might not have a clue as to what Rett Syndrome is or how it affects girls and their families.
There are many books out on the market that deal with Rett Syndrome but not many that deal with the specifics of what a family goes through, what the girls' go through and what needs to be initially done to cope with the diagnosis of Rett Syndrome. This book tackles the issues.
Kim Greenblatt, the author, lives in West Hills, California.
July 31, 2008 - Been busy to say the least. Overall, Sharren, Arianna, Jacob and I are okay. Please visit my new blog, profitable, where I talk about finance, business, special needs, taxes and the like. I have also a fiction site up where part of the proceeds go to Rett Syndrome research, Shockingly Awesome Press. Drop me a line and tell me how you are doing and what you want to see from me. Thanks, Kim!
December 23, 2007 - Here are some photos from Arianna from Equestrian Therapy. The Equestrian Therapy has helped kept Arianna from developing scholiosis (spinal cord problems). Happy Holidays!
September 04, 2007 - Two Rett Syndrome groups are merging to form IRSF. There is some concern in the Rett Community that the merger may not be a good idea but people just need to remember that in any time of change there is confusion. If it turns out that people's interests are not being addressed, they can always form another non profit agency :).
November 29, 2006 - Rett Coping Thought of the Day: Try to remember things - like updating your website once in awhile :). Ouch! Sorry I haven't been updating as much as I wanted to - I have been swamped with teaching in the evenings, family and the holidays! Hey, send me emails and let me know what you are up to and I will add 'em to the site if you want :). May the holidays bring you and your families peace, love and joy!
October 14, 2006 - Rett Coping Thought of the Day: Try hard not to be TOO lazy :). I have been swamped and apologize for the lack of site updates. I will redeem myself with 2 pictures from our annual Southern California Rett Syndrome picnic and raffle. Sherri Brady deserves the Congressional Medal of Honor for organizing and pulling off the picnic again this year. We lucked out without having any bad weather (it rained last night and early morning) and a great time was had by all. Here is a series of shots of most of the attendants and it was Arianna's birthday today as well. Happy Birthday, Arianna!!! Everybody be well!
August 17, 2006 - Rett Coping Thought of the Day: Coping with depression is not an easy thing. Make sure that you learn to forgive yourself and need be seek help. You can't help your family if you aren't well yourself!
August 16, 2006 - Rett Coping Thought of the Day: People make their own choices. Sometimes you would like someone to do something a certain way and they don't. That's life. People do what they want and you have to respect their choices ---unless it is your kids and they are under your care :). Stay well!
August 15, 2006 - Rett Coping Thought of the Day: Forgive yourself and others. I forgive myself for being so delinquent in posting to the site :). I've been busy with work, the family and the release of my new book. Carrying around a sense of perfectionism is great if you are living in a perfect world. I can't speak for you, but my world is not perfect ;). I tend to relax more and stay healthier by practicing forgiveness. Peace and be safe everybody!!
July 30, 2006 - My apologies for the lack of updates. I've been busy! Please look for my latest poker book, CRAZY PINEAPPLE 8/b POKER to be released in August or Sept 2006. As usual, part of the proceeds from sales go to benefit Rett Syndrome research.
Rett Syndrome Coping Thought of the Day: You and your family are entitled to your feelings and right to expression. Just remember that on the internet, once you express something, be prepared for somebody else to express back :). Patience and tolerance are good things to have with the heat we have been experiencing!
Be well! Stay cool!
July 06, 2006 - Rett Syndrome Coping Thought of the Day: Plan Now. Buy a day planner, get inexpensive calendars from your local 99 cent stores, print off calendars - do whatever it takes to get somewhere where you can plan for upcoming events. If you are computer savvy, make use of Microsoft Outlook and reminders.
We just came back from Disneyworld in Florida and had a great time. It was Arianna's first trip by airplane and she handled herself well. Overall the people at the Disneyworld resorts were wonderful. The contract bus service for the Magical Express needs some work. More about that in another post some other time. I will try and put up some pictures. Here is one to tease you with :).
June 07, 2006 - Rett Syndrome Coping Thought of the Day: Communication works!! Please take your time to write and communicate with your Senator and Congressman. Legislation is being introduced into the Appropriations Committee to get some funding for Rett Syndrome research. Senator Kay Bailey Hutchison will be introducing the legislation so PLEASE do all you can to support her and our Congressional friends in getting it into the system and ultimately passed!!
May 24, 2006 - Rett Syndrome Coping Thought of the Day: Sometimes nice things do happen! I received from Los Angeles Mayor Antonio Villaraigosa and Councilmember Dennis P. Zine of the 3rd District a certificate of recognition for enhancing the lives of others and helping research and funding for Rett Syndrome. Have a great Memorial Day weekend and be safe!
May 15, 2006 - Rett Syndrome Coping Thought of the Day: Growth Can Be Confusing. Watch your daughter as she grows and notice if she goes through spells where her muscles can't keep up with her bone growth. That seems to be happening to Arianna now and we are keeping her stretching. The electronic e-book version of the book will hopefully be out in a week or two as well for international customers. Stay healthy everybody!
May 02, 2006 - Rett Syndrome Coping Thought of the Day: Hobbies? Who has time for hobbies? Well, you should. They help keep your sanity. Mine is doing too many things at once. Like writing a book on low limit Texas Hold'em. The book will be available from Amazon, Amazon UK Barnes and Noble and me :). Hope is all well with your families. If you are an experienced low limit poker player you might want to check the book out here.
April 20, 2006 - Rett Syndrome Coping Thought of the Day: Vacation planning - if you haven't started - do it now. Make sure that you, your daughter and your family have an opportunity of some kind to take a break. It doesn't have to be far away or anything elaborate.
April 10, 2006 - Rett Syndrome Coping Thought of the Day: Retirement planning - if you haven't started - do it now. What are you going to do for your future and when you are gone? Who will take care of your girl? Have a good week...
April 5, 2006 - Rett Syndrome Coping Thought of the Day: Don't forget taxes are coming due. If anybody has any questions - email me! :).
April 3, 2006 - Rett Coping Thought of the Day: One of the saving graces of video games, taken in moderation, is that they can be an inexpensive form of a quick mental vacation. Sometimes that helps clear the thinking processes.
Mar 30, 2006 - Rett Syndrome Coping Thought of the Day : When you have a bad day, don't take it out on people.
Mar 29, 2006 - Rett Syndrome Coping Thought of the Day: It is flu season (Arianna caught it as well) so keep your girls comfortable and healthy and of course, EATING! By the way, Arianna is feeling better, thanks for asking :).
Mar 27, 2006 - Rett Syndrome Coping Thought of the Day: Even though it is only anecdotal because we don't have enough people for a study, experience in the Rett community has been that generic MiraLax doesn't work as well as the real MiraLax. Not much of a Rett thought - unless you are trying to ease the constipation for your angel! :)
Mar 23, 2006 - Rett Syndrome Coping Thought of the Day: Doctors are human beings too and they make mistakes. It doesn't hurt to politely get second opinions if there is a decision that needs to be made that will cause a major life change. Have a great weekend!
Mar 22, 2006 - Rett Syndrome Coping Thought of the Day: Organization. Make sure that you keep lists of important phone numbers, contacts, account numbers etc somewhere safe. Check up and update them often.
This Sunday is the Los Angeles Rett Syndrome families meeting. Email me for more info. Stay safe.
Mar 20, 2006 - Rett Syndrome Coping Thought of the Day: You will make mistakes. Just make sure that each day you learn a little bit so instead of making 1,000,000 mistakes you only make 999,999. . Then the next day only 999,998, etc... Stay safe.
Mar 19, 2006 - Rett Syndrome Coping Thought of the Day: Takes lots of pictures and movies. Children grow up fast.
Mar 15, 2006 - Rett Syndrome Coping Thought of the Day: Talk to other parents and find out how they do things with their daughters. That reminds me, there is going to be a Rett Syndrome meeting for the Los Angeles families in two weeks. More information if you want - email me and I will post it. Stay well!
March 12, 2006 - Rett Coping Thought of the Day: Be attentive to details. A lot of people in the Rett Syndrome groups seem to be getting confused between seizures and general frustration. Sometimes our girls will blank out and it isn't a seizure. It is that our girls have wanted something and their condition with Rett Syndrome has kept them from communicating it. They are frustrated. They freeze up.
We experienced something similar when Arianna was undergoing an EEG. It turns out that she did not have anything as a seizure at that time of the test and Arianna did step out of the agitation when she got what she wanted - like watching a tv show. The best way we can articulate it is that Arianna wanted something, couldn't communicate it and then got frustrated and worked herself up so she looked and acted like she was having a seizure but really didn't have one.
The doctors who were conducting the EEG confirmed that there wasn't a seizure at that time. Just something to be aware of because you really aren't "talking" your daughter or getting her out of the seizure - as far as we can tell. Just easing her frustration - and that works just as well :)!!
Hope that helps and have a great week ahead!
March 08, 2006 - Rett Syndrome Coping Thought of the Day: With girls who have Rett Syndrome, take a few extra minutes to wait for a non-verbal response. Some Rett Syndrome girls will respond to communication slowly. Here in southern California it has been wet lately. Hope the weather is well where you are at.
March 01, 2006 - Rett Coping Thought of the Day: Practice forgiveness often. I recently got angered over somebody saying something ignorant about Rett Syndrome but I realized it was part of his upbringing. I took the time to explain a few things and the person, without going into details, realized that he had not said the most appropriate thing for the situation. Have a great weekend!
February 28, 2006 - Happy Birthday, Jacob and many more!
For those of us living in California, Oregon and Nevada, please be careful - we are in for a lot of rain.
Rett Coping Thought of the Day: Make sure in your emergency kits in the car/van that you have extra clothing for bad weather and for the coping part of the thought - some fun beverages for your children and yourself! Stay warm and dry!
February 25, 2006 - Rett Coping Thought of the Day: As cliche as it sounds, karma is very real. As a follow-up to yesterday's thought- do good things.
A living example of this was I received two unexpected excellent book reviews from Gary and Martine Brandner. I may use some blurbs of their's on the next book or another one I am working on. I first met the Brandner's decades ago and have kept in touch. Cool. Have a great weekend everybody.
February 24, 2006 - My apologies for being late with Rett Coping Thoughts. I've been swamped with work. Sharren has been invited to speak to a class of special needs teachers about Rett Syndrome. We are delighted and special thanks to Jeannine Rose Feltman for setting the speaking engagement up.
Rett Coping Thought of the Day: Don't burn bridges if you can help it. You never know where you will find help next or where you can offer help!
February 19, 2006 - Rett Coping Thought of the Day: Do things to keep your mind busy if you have jobs that are tedious.
Februart 17, 2006 - Rett Coping Thought of the Day: Remember that deep down most people are shallow :). Have a lot of patience because people are too wound up in the digital world and too use to having things instantly. Remember that not all the good things in life come from instant gratification. It takes our girls some time to respond to questions but when they do - it is worth the wait!
February 16, 2006 - Rett Coping Thought of the Day: If you have the income for it, learn to pay your bills online. It is a great time saver.
February 15, 2006 - Rett Coping Thought of the Day: Be gentle with yourselves. You are not expected to drink the ocean through a straw in one day. Take little sips each day. That way on days you need to summon forth a lake of energy to get something done you can do it!
Special hello to our Australian friends - Shelley Beder and her daughter, Amber!!! Aussie, Aussie, Aussie, oi, oi, oi! :).
February 14, 2006 - Rett Coping Thought of the Day: Make sure Mommy gets something extra special for Valentine's Day! It doesn't matter if you are with a partner or not, you deserve a valentine for the efforts you are putting forth for taking care of your girl. If you can, do something for Mom (or yourself) and as stated in the previous Thought of the Day - it doesn't have to cost a lot of money. HAPPY VALENTINE'S DAY Part 2!
Arianna went for her check-up with her neurologist and since the last visit, there have been no seizures (according to the Vagus Nerve Stimulator readings). Whoo hoo. It is sometimes hard to tell between body tremors and a seizure.
February 13, 2006 - Rett Coping Thought of the Day: With Valentine's Day coming up, just a quick reminder that EVERY day can be a holiday without having to spend a lot of money on flowers (especially if somebody is allergic to them), dinners (they get very expensive at holidays), cards (ditto) or chocolate (hey! chocolate is good ANYTIME). If you are a caregiver you are doing a great job and let me be the first to wish you a HAPPY VALENTINE'S DAY Part 1!
February 12, 2006 - Rett Coping Thought of the Day: If you drive around in a van, keep a small, sturdy step stool or ramp handy. It makes life easier when trying to help your girls into the vehicle. Make sure the ramp is secure and bend your knees if you are doing any lifting. Happy Birthday to Abraham Lincoln!
February 11, 2006 - Rett Coping Thought of the Day: Rett girls love music. If you get your daughter's tastes to be similiar to yours (Country Western, Dance, Rock, Hip Hop, etc) you will be spared endless hours of listening to Barney...
February 10, 2006 - Rett Coping Thought of the Day: Be careful of solicitors or sales people who prey on you because of your daughter's condition. Some people will try to take advantage of your situation - read contracts carefully and if something is too good to be true, it probably isn't true...
February 09, 2006 - Rett Coping Thought of the Day: The eyes have it - regardless if your daughter is Black, White, Asian, Hindi, Latina, Persian, whatever - your daughter communicates volumes with her eyes. Sometimes if you are patient and your girl cannot communicate another way, you can get communication with blinking. Just watch where her gaze goes and ask her to blink once for "Yes" and twice for "No" - and be patient.
February 08, 2006 - Rett Coping Thought of the Day: Dealing with Rett insomnia is no fun. It is the same with any special needs child (Cerebral Palsy, Muscular Dystrophy, Autism, etc) who has trouble sleeping or has taken too long a nap. Find dvds that loop that your daughter likes and play them. Look for the longer 2 -4 hour movies or shows and with any luck she might fall asleep. We would string together episodes of Rugrats and play them on a video cassette. Good luck!
February 07, 2006 -Rett Coping Thought of the Day: Make sure you include a fresh change of clothes and diapers in your daughter's knapsack if she goes off to school. If it is heavy arts and crafts day, juice gets spilled on her clothes, etc. it will make the difference in your daughter's overall comfort and ride home if she takes the bus or shuttle.
February 06, 2006 - Rett Coping Thought of the Day: If there are no diabetic or med issues never underestimate the power of sweets when trying to get your daughter to take her meds. Applesauce is usually a great crowdpleaser.
February 05, 2006-Rett Coping Thought of the Day: Handle all your bills at the same time every day . Take advantage of the features of Microsoft Outlook and other calendar programs to make reminders and ticklers of doctor appointments, deadlines for filing taxes, mortgage and county tax payments (think about opening an impound account if you can afford it and if you don't know what an impound account is - please email me - it will simplify your life).
FOR U.S. Visitors - Snipped from the IRS website www.irs.gov are some pages describing what is a valid taxable medical deduction. Please go to the source, the IRS and any state agencies and consult a tax professional if you have any questions. Each situation is unique and depending on your situation may or may not apply. Yes, I do taxes on the side :).
some U.S. Tax info page
February 04, 2006 - Rett Coping Thought of the Day: Patience. It is an art worth mastering. Our daughters have patience with us when we don't understand what they are trying to communicate with us. The frustration they feel eventually boils up into squawks and hand motions. We need to be patient with them as well as with ourselves. Hope you are having a good weekend.
February 02, 2006 - Rett Coping Thought of the Day: Make a journal and start writing down your daughter's routine. This way you can have a log to notice things when something changes. It doesn't have to be a medical chart - far from it - just something that has what your girl's day is like to have for babysitters or reference. It can also be a good way to track if your daughter is getting her meds if she is on more than one.
February 01, 2006 - Rett Coping Thought of the Day: For those living in winter climates, make sure that your Rett girls are warm. Rett girls are notorious for poor circulation to begin with (Arianna is at least) and they are not in a position to vocally say that they are cold. Like our moms use to say, "Dress in layers".
I am working on trying to get our neurologist to do a write up for the site on the Vagus nerve stimulator and some other neat stuff on behavior. Happy February!
January 31, 2006 - Book is on sale in the UK.
Rett Coping Thought of the Day: If you are a solo act (single caregiver), make your daily tasks simple. Take care of critical things (making sure you have enough food in the house, cleaning, etc), set aside the same time every day for reviewing bills and paperwork and stick with a schedule. After awhile it will become second nature and it will help out on days when everything goes to pieces.....
January 30, 2006 - Rett Syndrome Is Not Tourette's Syndrome
People often confuse the two syndomes but they are actually completely different.
January 30, 2006 -- Too many people get confused when they hear the words "Rett Syndrome" and they get it confused with "Tourette Syndrome". Tourette Syndrome is a childhood onset condition that is associated with attributes of many other conditions. In the movies and in jokes, it is usually depicted with a person swearing or shouting obscenities involuntary but there are other aspects of it as well. Without meaning to oversimplify it, it is a syndrome where people do compulsive behavior.
Rett Syndrome, without meaning to simplify that as well, is a genetic condition where 1 out of 15,000 girls are born and they cannot walk, lose the ability to walk or talk and are generally distinguished by hand-wringing. There is a genetic test that can tell if a girl has Rett Syndrome. Most boys born with the gene die at birth.
Both conditions require understanding, compassion and patience. Caregivers who are unfamiliar with Rett Syndrome are advised to learn the differences because girls diagnosed with Rett Syndrome usually cannot take care of themselves. They require somebody to feed them, care for their functions and learn to communicate with them.
One of the differences between the syndromes is that Rett girls lose the ability to speak. In some cases, they can learn to communicate with sign language (if they can develop the motor skills), eye communication or with electronic helper devices.
January 28, 2006 - Here is a link to the press release that went out for the book: http://www.prweb.com/releases/2006/1/prweb338249.htm.
Make sure that you are getting enough exercise as well! You rock and are doing great!!
Suggestions or comments? Please email the author at firstname.lastname@example.org
For more information on Rett Syndrome, click here.
For books on other syndrome and conditions that might be of interest to you or others, click here.
Kim Greenblatt Publishing - where portions of all sales go to Rett Syndrome research!