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See the complete list of topics.

Marathon | Marriage and Partnerships | Meal Time | Medication Movies Music

 

Marathon

The ASF is an approved charity for the Bank of America Chicago Marathon and has a team of runners called the Windy City Angels. These runners can either time qualify for the event, get in via the lottery or get one of the ASF’s guaranteed entry spots. Marathon runners raise around $80,000 for the ASF each year and experience an amazing and rewarding event. Registration begins about a week after the marathon in October.  For details visit Events > Bank of America Chicago Marathon or contact Kitty Murphy

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Marriage and Partnerships

To avoid the “Who does more?” competition that breeds resentment and erodes marriages and relationships, it might be wise to get everything out in the open and create a list of responsibilities that involve caring for your angel. Plug in “who does what” on the list and come to an agreement. This plan will also help establish the all-important routines that help your angel thrive. Of course, there will need to be some flexibility at times, but, having a clear plan for the day-to day responsibilities helps lessen chaos and burnout.  The pressures of having a special needs child can tip a marriage over the edge, so you HAVE to be proactive.  Having a scheduled weekly respite “date”-doing anything together for the just the two of you- will help you keep connected. If one of the parents is not willing to do even a small share of the responsibilities, it is time to see a professional!

Sample list:

  • Get angel up, go to the bathroom, and get dressed
  • Fix breakfast
  • Pack lunch
  • Supervise breakfast and medications
  • Brush teeth, comb hair, sunblock, etc.
  • Wait for bus or drive to school or program
  • Communicate with school and teacher
  • Do laundry
  • Do grocery shopping
  • Do clothes shopping
  • Monitor and order medication
  • Doctor appointments
  • Therapy appointments
  • Prepare dinner
  • Bathe
  • Toileting
  • Finger nail and hair trimming
  • Bedtime routine (same time every evening as much as possible), tooth brushing, etc.
  • Get up in the night, if necessary… maybe take turns?? 🙂

The following was written by: Drs. Charles and Elizabeth Schmitz. They are America’s #1 love and marriage experts and the authors of the award-winning and bestselling book, Building a Love that Lasts.

Life is not always fair, just and beautiful. And often life doesn’t turn out as you had expected.

But the truth is, when you’re dealt a “bad hand,” you pick yourself up, dust yourself off and get back in the game. Giving up, feeling sorry for yourself, and crying over the unfairness of it all doesn’t cut it in life. Parents of special needs children certainly know this is true.

Raising children with special needs challenges even the strongest marriage. But here is the truth: You cannot let your child’s disability or ailment interfere or destroy your marital relationship. As we always tell our clients, based on our 30+ years of research around the world, “the parents’ relationship with each other trumps everything else!”

Here are 9 tips for nurturing your marriage while caring for a special needs child:

  1. Talk openly and honestly about your feelings and frustrations.In times of stress, we often keep everything bottled up inside until it explodes out over the slightest disagreement. But this approach won’t work if you want your marriage to survive and thrive. In successful marriages, there are no sacred cows. Happily married couples share insights about everything — the good, the bad and the ugly. They create a safe space let of steam and just listen to one another. They are each other’s best friend.
  2. Keep the flame of your love affair alive … every day. Can you rattle off a list of activities, topics and destinations that light you and your spouse up and reconnect you to fun and romance? Have you figured out what clears your mind and gives you an unobstructed view of your world together? If not, start today by carving out time to have a romantic date with each other, get a hotel room, go for a long walk together, drink a bottle of wine watching the sunset, write each other a love note, or snuggle in bed a little longer in the morning. Little loving gestures made every day are what thread a successful marriage together. 
  3. Tackle all financial challenges with teamwork. Balancing the family budget requires teamwork, especially when the added challenge of taking care of a special needs child comes your way. It requires common goals. It most certainly requires family support. People in love support each other through thick and thin — through tough times and uncertainty. So lean in and figure out those finances together. 
  4. Don’t blame each other when things get tough. The blame game never works in love and marriage, in fact it’s destructive. It’s easy in tough times to blame the one you love for your collective misfortune, but shaming or chastising each other in challenging times only makes things worse. Frustration is normal, but resist the urge to lash out at each other when pressure mounts. 
  5. Don’t wallow in self-pity. It is a wasted emotion. No problem in all of history was ever solved by feeling sorry for yourself. Successful couples grab “the bull by the horns” and work for solutions. Pause to rest and comfort each other? Yes. But indulge in self-pity? No. 
  6. Prioritize time alone together. Yes, finding time alone is challenging, especially when your special needs child requires a great deal of constant care. But your relationship matters, too, and also requires constant care. Private time alone together is essential to a successful marriage. Connection and communication improve tremendously after refreshing your mind and spirit. You have to belong to yourself before you can belong to others.
  7. Nurture a network family and friends. You and your spouse do not have to do this all by yourselves. Ask friends and relatives for help. Solicit support from aunts and uncles. Seek support from your neighbors. Don’t be shy about asking for help. Don’t be deluded into thinking you can do it alone (or should do it all alone). When you give concrete tasks or make specific, manageable requests, loved ones are usually happy to jump in and help out. 
  8. Recognize when you need professional care support. At some point, you may need help from professional caregivers, perhaps even an assisted-care or similar facility. Don’t destroy yourself with guilt if that time comes. At this critical juncture in your child’s life, someone else may very well provide the best care. That is not a failing on your part. Make the choice that is healthiest for your whole family.
  9. Tend to your own health and happiness. Engage in a daily exercise program. Sleep. Eat healthy — lots of fruits and vegetables. Take your vitamins! Make sure you both take your own medications on the prescribed schedule. And don’t forget your annual physical exams. It is nearly impossible to take care of others when you don’t take of yourself.

Make no mistake about it, caring for a special needs child is sometimes stressful beyond belief.

Don’t let the negative impact shatter your marriage! The comfort and joy of a solid marriage helps you overcome almost any obstacles that comes your way.

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Meal Time

See Resources and select Meal Time from the category drop down menu. 

Angelman Family Contributions

Meal time can be mass chaos!! Our angel sits in an adult Rifton chair to prevent him from running around the kitchen seeking food!
AS Family Member

Make sure you have washable paint on your walls because your angel will throw food and you want to make sure it is easy to clean!
AS Family Member

The only bib that my three year- old son could not pull off on his own was a regular t-shirt. 
Chaya, angel Avrumi, age 3.5, Del+

Pack an extra t-shirt in your angel’s school backpack for the staff to put over your child’s regular top at lunch time.  When finished eating, the school can send home the dirty t-shirt in a plastic bag.  This seems to be a more socially acceptable strategy for school.
AS Family Member

Take your angel out to eat, ask for a booth,let the waiter know she’s a grabber! Take some food for her to eat while you wait for yours. Get her desert!!
Norma, angel Katarina, age 20, Del +

Our son did well using a spoon with sectioned containers so that he could scoop towards the side and keep the food on his spoon. He learned to use a fork similarly after that and it helps for plates to have a raised edge. We still use cups with lids and straws to prevent spills and promote independence.
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1

My son does not like to drink anything. It does not matter what it is. I had to come up with a way to increase his fluid intake. Dessert turned out to be the great motivator. I put the dessert on the table, just out of his reach and a glass of water in front of him. Then I tell him that he can have the dessert (or other desirable food) but he has to drink first. He empties that glass of water in no time at all!
Inge, ingediehl@hotmail.com, angel Marcus, age 34, Del+

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Medication

See A- Acid Reflux

See C- Constipation

See G- Gastrointestinal Issues

See S- Seizure Medication for detailed information and tables comparing seizure medications.

https://www.angelman.org/what-is-as/medical-information/epilepsy-and-its-treatment-for-providers/

 

An excerpt from 2009 Facts about Angelman syndrome
There is no agreement as to the optimal seizure medication although valproic acid (Depakote), topiramate (Topamax), lamotrigine (Lamictal), levetiracetam (Keppra), and clonazepam (Klonopin) are more commonly used in the North Amereica. Carbamazepine (Tegretol), ethosuximide (Zarontin), phenytoin (Dilantin), phenobarbital, and ACTH are less commonly used. Vigabatrin (Sabril), an inhibitor of GABA metabolism, should not be used. [63] Single medication use is preferred but seizure breakthrough is common. Some children with uncontrollable seizures have been placed on a ketogenic diet, and this may be helpful in some cases. Children with AS are at risk for medication over-­‐‑treatment because their movement abnormalities or attention deficits can be mistaken for seizures and because EEG abnormalities can persist even when seizures are controlled.

Angelman Family Contributions

Using saline nasal gel or spray helps for congestion.
Linda

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

We use Desitin cream not only for his bottom but also for sunburns.  It works amazingly well.
Daniele, angel Frank

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, angel Ra’Shawn

We use a product called Little Noses when our son suffers from nasal congestion.
Brisia, angel Mario

Melatonin has been a life saver for our family.  Esmae takes 3mg dissolvable a half hour before bedtime and it generally allows her to sleep approximately 10 hours each night.
Julie, julialouis@howardhanna.com, angel Esmae, age 5, UPD

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Movies

AMC Theaters provide “Sensory Friendly Films” in partnership with the Autism Society.

Angelman Family Contributions

Justin loves movies! We probably have 150 of them! His favorites are old musicals: Singing in the Rain, Sound of Music, Oklahoma, Funny Lady, and Wizard of Oz. The new A Star is Born and Bohemian Rhapsody are top of his list, too!! He does like Disney movies too, but he does not like cartoons at all. They just do not hold his interest!
Barbara, bbarclay1@verizon, angel Justin, age 22

I will never forget the first time I took my daughter to a movie on Thanksgiving Day to see Frozen.  Extended family had come to visit, and I didn’t want my girl left out, though I wondered if she would make it through the movie. She loved it! After this, we had so much fun as a family planning for another movie outing because this made us all feel so good that EVERYONE could do this. We discovered soon that she liked watching movies at home, too, and so because of her limited eyesight we mounted our TV above a sturdy piece of furniture, so that she can stand and watch her favorite movies and shows. I think this makes our girl feel validated and understood, but we could have so easily second-guessed our decision to take her to the movies, and we would have missed out on this thing she loves so much.
Sarah, bnamommyisfun@yahoo.com, angel Lily, age 14, Del+

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Music and Music Therapy

Many Angelman syndrome patients are non-verbal and have difficulty communicating with parents or caregivers. To help these patients with their verbal, motor, and social skills, music can be used effectively in therapy.

What is music therapy?
In the established health profession of music therapy, therapists use music to address the physical, emotional, cognitive, and social needs of individuals. A music therapist assesses the strengths and needs of each patient and provides treatments such as singing, creating music, and listening or dancing to music.

The combination of music with therapeutic techniques can help strengthen patients’ abilities, which can promote improvement in other areas. Music therapy also provides a way of communicating for non-verbal patients.

How can music therapy help Angelman syndrome patients?
Tasks can be set to music to teach specific skills, such as teeth brushing while listening to a fun song, for example. Music can be used as a memory aid to teach specific information such as a phone number or address.

Music therapy can be used to help patients with walking by providing a steady rhythm for patients to improve their gait and stride. Therapists may play music with games to build movement skills. This may be combined with physical or occupational therapy to improve strength, flexibility, coordination, and range of motion.

Many patients with Angelman syndrome have a short attention span, which can limit social interaction. Music therapy provides a structured way for patients to interact with others. Through music, they can learn skills such as sharing, taking turns, and contributing to group activities. Specific songs can be used to build specific social skills, such as making eye contact.

How can I find a music therapist near me?
Your physician or physiotherapist may be able to recommend a certified music therapy center near you. Your physiotherapist may also be able to coordinate with the center to establish guidelines and goals for the therapy, as well as to track progress and address issues or concerns that might arise.

The following resources may be helpful:

Tuned in to Learning offers a comprehensive music-assisted learning curriculum for special education. American Music Therapy Association provides a listing of local music therapists. 
Emily Malcolm, PhD

Angelman Family Contributions

My son Brantley 2 (deletion +) loves listening to music! His Physical Therapist here recently is letting him stand with an Alltec baby boom box. You can adjust the volume. Brantley loves listening to the vibrations and rhythm! It’s helping him wanting to move around more!
Sarah, j.sorrels09@blueriver.net, angel Brantley, age 2, Del+

Our church provided a rhythm group for people with special needs and assistants so our son could make music with drums, triangles, sticks, bells, etc. He enjoyed having an activity of his own and a place to make a joyful noise! He’s always enjoyed worship time in church, so this was a special treat.
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1

We play a CD in the hallway outside my son’s bedroom since he enjoys falling asleep to music. This seems to help him stay put and calm down.
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1

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