“ The words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago . In the past I might have suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by " experts ". Today there is a multitude of valuable information available and it is written by the true experts , the parents of the Angelman Syndrome Community . Do your research . Read all you can . Join the online support groups and ask questions . Find local families and meet their families . You are going to see a wide variety of personalities , abilities , opinions and you are going to feel right at home . Here are a few tried and true words of advice that I still share because they have stood the test of time . 1 . Never underestimate your child and do not base your expectations on the evaluations of others . 2 . Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis . There are many people out there who think they know best but a parent ' s instinct and the intimate knowledge they have of their child serves as the best indicator of what is right and of what needs to be done . 3 . No matter what the numbers say your child is still one of a kind and always will be . A diagnosis is a way of helping you help your child but it does not define your child or your family . Your child has a syndrome . The syndrome does not have your child . 4 . Be a family first . Try not to let a diagnosis consume you . 24 / 7 therapy is not healthy for anyone . Love and play are the best gifts you can give your child and are the best stimulants for growth and development . 5 . Take care of yourself . Take care of your spouse and take care of your other children . It is easy to focus on your child with a diagnosis and not realize you have let other things go . We have all tried to be the strong one and prove we can do this but I assure you the earlier you learn to allow others to help out the easier it will be . 6 . There will be good days and bad days . Your emotions will betray you when you least expect it . You will experience the highest and lowest of emotions and sometimes on the same day . You will sweat the small stuff and you will celebrate the small stuff . You have joined a community that will be here for all of this and we will understand ”. Brenda Dixon , Mississippi Jonathan - 33yrs AS Del +
Words Of Wisdom
“ Never accept a doctor telling you that your child ‘ won ' t be able to ’... Never under estimate you child ' s potential--our kids love to learn . Always have faith in your ' gut ' instincts ... Momma ( or Daddy ) usually knows best . Look forward with faith in the advances and treatments that are on the horizon , but , as you struggle ( from time to time ) in your daily life with an Angel ( and there will be struggles ), know that you are not alone--we are all in this together . Don ' t be afraid to ask questions . Support , tears , cheers and hugs are just a phone call or Facebook post away . Take time each day to recognize the blessings in your life . Enjoy your Angel hugs !!” Carol Pulver , Florida Shea Pulver - 22yrs AS Del +
“ Don ' t allow anyone , even yourself , to see a diagnosis instead of a child . A child needs a parent more than a therapist or researcher . Yes , we need to wear several hats to be good parents - but from your child ' s point of view , he really needs Mommy and Daddy more than Dr / Therapist / researcher / advocate - he only has ONE parent or set of parents . Sometimes we get so caught up in " helping " them that we forget the main point , which is to be there physically and emotionally for them . From the start , concentrate on communication and functional skills . These things cannot wait until they ' re older . Typical children start learning those things immediately , and nobody says " oh , wait , I don ' t know how to communicate with you yet - I need to take a class " or " oh wait , you ' ll have to learn to potty train or pull your pants up and down when you ' re 15 ( and 6 feet tall )"... it ' s more natural to just hand-over-hand those motions from a very early age , and present communication pictures ( or even the objects themselves to choose from ) as a matter of course as you go about your day . ( This is Dora , this is a book - which one would you like ?) If it takes years to develop the actual skills , it ' s better to start at age 2 and have that skill when they ' re 12 , then to start at age 12 to teach skills ... when they ' ve already got ingrained habits and learned helplessness from having everything done for them . Believe my aching back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body . Kids with special needs get just as much joy and confidence from ' doing for themselves ' as anyone . You never know until you try . Read " Disability is Natural " by Kathie Snow . This is common sense advice for parents of special needs kids that they really need to hear .” Lulu Carpenter , California Simon - 23 yrs AS
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