AS Family article
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Our Family Sleep Tips
By Shari Caspert We learned the best tip at our very 1st Angelman Conference 15 years ago: Change Matthew’s bedroom door to a dutch door! It is the safest place in the house for him, he can play, have privacy and when he does not sleep we know he is safe! Thanks to his dutch door, he sleeps in a regular bed and has room to roam. Part of his nightly routine includes; diffusing therapeutic grade Young Living Essential Lavender in his room an hour prior to sleep and an Epsom salt bath with a few drops of Lavender. We love “pure” therapeutic grade lavender because it assists with sleep and…
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I am Angel Aitor
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Interview with Pamela J. Lyman, Author of the book ‘In the Company of Angels’
I was inspired to write ‘In The Company of Angels A Compilation of Stories and Poems on Angleman Syndrome, By Those Who Know it Best’ very shortly after our son Conrad was diagnosed at 15 months.” – Pam Lyman After the diagnosis I hopped on the internet and started searching for information about this diagnosis that had just rocked our world. What I found was minuscule and very scientific and impersonal. I wanted the human story, I needed to be connected with other parents, family members going through what I was going through. I needed to know that I would eventually come out of the dark hole I was in and…
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Aromatherapy and Angels March-April 2014 edition
This has been quite a crazy winter! We live in Northern New Jersey, have had lots of “indoor” family time due a very harsh winter season. We have all gone from the “Holidays”, right into bad weather and Matthew has had many “snow days” off from school, how I loved those as kid!!! What is best for our Angels and families? Routine, fresh air, eating well, sleeping well & controlling “stress”. This helps us keep our minds, bodies and immune systems working well and helps to protect us from colds and flu. It is important to keep our spirits uplifted, and our bodies and minds balanced. This is how we…
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The Gift of Helplessness
A Touching Story by Karen De La Fuente There was a Meeting in Heaven. Several angels and other souls were present, along with the usual Council members. It was time to prepare some souls for their journeys on Earth. Several Council members spoke about various topics, in hopes that these unique souls would truly grasp the missions that they were about to undertake. “When you first emerge in your physical form, you will still feel very connected to This Side; which, ironically they call the Other Side.” (A low chuckle ran through the room.) “As time goes by – and it goes by very differently from the way it passes here –…
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Siblings Love and Support – Valentine’s Day 2014
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Angelman Syndrome and Sleep Disorders
Angelman syndrome children and adults have serious sleeping disorders. by Sybille Kraft Bellamy Apart from seizure problems, it is one of the most difficult aspects of the syndrome to live with. Some angels sleep only a couple of hours a night, some fall asleep easily but wake up very early and some fall asleep very late and sleep late in the morning. This can disturb the school schedule or therapy sessions and it is exhausting physically and psychologically for the parents and caretakers. The majority of angels, do not take naps and when they fall asleep it is usually late in the afternoon which disturbs the usual sleep pattern. In order to increase the chance for our angels…
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Aromatherapy and Angels
By Shari Caspert, Mom to Matthew age 17 I was introduced to Young Living Essential Oils three years ago by another special needs Mom, our son Matthew was 14 at the time… I really had no experience with essential oils, or aromatherapy. I always thought that we lived a pretty healthy lifestyle, ate well, exercised & tried to get a good nights sleep – tricky with our Angelman Kids! We are now a family that lives on Stress Away, Deep Relief, Lavender, Peace & Calming, Frankincense, Lemon, Thieves, Ningxia, Peppermint and more.. This is my everyday survival kit!!! I am sure that you are wondering, How can this help me? …
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A Cure for Louie
By Terry Jo V. Bichell, MPH, CNM (PhD candidate) Nashville, TN February 26, 2012 I learned, while traveling in Nigeria long ago, that the child who follows twins is supposed to bring luck, or be lucky, or carry some kind of amazing happy blessing. I remember thinking about that luckiness when I saw Louie’s squished newborn face, just after his cord was cut. Louie was born in February, 1999, sweet, social and sleepless just like his big sisters. We didn’t learn until a year later, when we sought a reason for his inability to sit up and crawl and babble like all the other playgroup babies, that he was born without…
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Potty Training Tips
By Keisha Tipton, Mom to Rylee age 9 Here is Rylee’s data form that I use. -I simply mark the date and time that I took her to the bathroom. -Then I place a check mark whether she went #1 or #2 in the potty. -In the comments section I write whether her pull up was wet or dry. When she stays dry for weeks on end I switch her to panties. For traveling, I still use Pull-ups. There are times she can even wear panties overnight as long as she goes good before bed, doesn’t have too much to drink and has good seizure control. When she starts having accidents…
