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Male Issues | Meal Time | Medication | Movies | Music

 

Male Issues

Please remember that our boys must be entered into Selective Service.  It took us three letters and two phone calls to make them understand that our child was not service material.  I was almost to the point of letting them see our angel when they finally began to see the light.
Susan Pike

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Meal Time

We have always had our daughter Jessica (age 14 and deletion positive) eat her meals with us.  I never wanted her to feel she wasn’t part of that family time.  When she was younger we had a Rifton chair she sat in at the table, but as she got older we worked on having her sit in a regular chair. For several years now she just sits at the table in a regular chair like everyone else.  She has learned about personal space this way and can sit calmly. For the most part she doesn’t reach for other plates.  Sometimes my food isn’t as hot as I like, but as long as she is a part of suppertime my goal has been achieved.  Besides, I can heat my food up in the microwave and continue to eat.  I eat while I feed her so usually everything is fine. We work with her trying to get her to use a spoon or fork, but she hasn’t mastered it yet.  If it is finger foods, I will let her eat by herself as much as possible. But, if it’s something like spaghetti, which isn’t appropriate for her to use her hands, I will help her or feed her myself.
Heather Schneider

There are some foods our angel loves but has a hard time eating, such as Kraft dinners and salads.  We will mash up the Kraft dinners to make it easier for her, and I will usually give her a piece of bread so she will chew more thoroughly.  For salad, I cut up the lettuce in smaller sizes with quite a few vegetables so she will chew it more.

To get him to finish his main meal, I set the dessert just out of reach and tell him that he can’t get it until he finishes the food on his plate. (He is underweight so he is on a high calorie diet.) It took him awhile, but now he understands my rule.
Inge Diehl

Our son just turned thirty-seven.  His focus on food has become much worse over the years.  To slow down his pace at mealtime, we have a system where we to count to five before each bite.  The counting is either verbal of signing.  He will tap his finger on the table too.
Margery Estrin  angel Daniel,  age 38

My angel is a very messy eater, so what has worked well for our home was a plastic floor cover intended to go under a desk.  They sell them at any office store and Costco.  This really helps on clean-ups.
Corbin Thompson  Tacoma WA  angel Tyler Thompson, age 27

Our angel usually eats first and during our meals he still eats something else. When we go to restaurants we try not to bring him too hungry since he is impatient and won’t wait to start eating. We order something for him as soon as we get into the restaurant. He eats almost everything we give him.
Brisia Barba  Chihuahua, México, angel Mario, age 9

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Medication

Using saline nasal gel or spray helps for congestion.
Linda Thompson

To give cough medicine that tastes terrible, dip a bite of bread in the cough syrup and it soaks right up. What angel doesn’t like bread?
Daniele Hill  Smithfield, NC  angel Frank, age 20

We use desitin cream not only for his bottom but also for sunburns.  It works amazingly well.
Daniele Hill  Smithfield, NC  angel Frank, age 20

I purchased a pill container and every week I put all of his medications in there for each day. Then, I don’t have to figure out or try to remember what he needs to take. It helps especially when you’re in a hurry.
Aina Abdullah  Fairfield, Ohio  angel Ra’Shawn Jarrett, Jr., age 21

We use a product called Little Noses when our son suffers from nasal congestion.
Brisia Barba  Chihuahua, México, angel Mario, age 9

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Movies

Some very good family-friendly movies that feature disability themes include:
“Season of Miracles”, “October Baby”, and “Jimmy.”
Lisa Jamieson  Minneapolis  angel Carly, age 16

This is a link to AMC theaters which provides “Sensory Friendly Films” in partnership with the Autism Society.
https://www.amctheatres.com/programs/sensory-friendly-films

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Music

There have been many songs inspired by children with Angelman Syndrome. Some that come quickly to mind are: “Time of My Life” and “Angels Waiting On Wings” by Reggie Hamm and “Hope for the Broken” by Erin Jamieson.
Lisa Jamieson  Minneapolis  angel Carly, age 16

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