HBO’s The Alzheimer’s Project: Caregivers

May 18, 2009

This weekend I watched the film Caregivers (don’t you just love On Demand?).  One theme that jumped out was the isolation that caregivers suffer.  Several of the film’s stars (I think that’s a good name for them) talked about how very quietly the invitations to events and gatherings stopped.  Not only does this damage the patient, but even more so the caregiver who needs more than ever to maintain her connections to the world.

This happens with families with special needs children, as well.  They lose their friends and even family as their child grows past the infant years. 

It all comes down to lack of knowledge.  Very few, if any, of us innately know how to interact with a person with mental deficits or behavioral issues.  The good thing is, it’s not too hard to learn. 

If you have a friend, neighbor, or family member who is caring for an individual with Alzheimer’s, another form of dementia, behavioral issues, mental retardation, Turret’s Syndrome, or any other type of disability that affects the mind, please – don’t shy away from them – they need you in their life.  Just ask your friend – “I would love to spend the afternoon with you, please tell me what to expect from Vanessa, and please give me some tips on how to interact with her.”  There are also so many books and websites devoted to various special needs and highlighting skills for interacting with the special needs person.

And if you are the caregiver and you have noticed that your friends and family invite you out less frequently – call them up, explain that you understand why they have backed off, and then ask if you could describe a few tips for how to spend time with your loved one. 

All it takes is a little bit of knowledge, patience, and a willingness to try something new.  

Write a Letter of Intent for Your Special Needs Child

February 23, 2009

So you’ve met with the lawyer and signed all the legal documents needed to ensure that your child will be properly cared for after you are gone.  Congratulations, that’s an accomplishment to check off your list.  But you’re not quite done.  

Sit down and write a “letter of intent” to the people you have nominated to care for your child in the future.  Include all the technical information, like doctors’ and therapists’ names and numbers, allergies, bank accounts, contacts at the school or day program or other place where your child spends her time.  Then write down all the things that make your child who she is: What are her strengths?  What makes her happy?  When he is in a bad mood, or gets anxious, what soothes him?  If you are walking with her and she sits, does this mean she is tired?  Doesn’t want to go where you are taking her?  Something else?  Does he shave himself in the morning or do you need to do it for him?  Does he have a favorite song?  If you take her on vacation or a day trip, are there certain comfort items you must pack?  What is her morning routine?  Bedtime routine?

Providing all of this information to the ones who will be caring for your child in the future will help to make her transition to the next stage of life a bit smoother.  And you will know that in addition to providing her legal and financial footing, you have also helped her to continue living life to her full potential. 

Asperger’s Association of New England

December 3, 2008

Filed under: Special Needs — Tags: , , — Alexis @ 2:49 PM

Have you checked out the Asperger’s Association of New England?  What a busy place.  They provide services and support to teens, adults, family members, and educators and professionals.  

Are you a teen looking for a social network?  Are you a parent seeking workshops on parenting and advocating in the schools?  Are you looking for a support group or an online chat room?  They have it.  

Or are you a friend or family member who simply needs to learn more about Asperger’s and on what to expect of your diagnosed friend and on how to best interact with her for a fruitful and loving relationship?  They have information for beginners, too. 

Be sure to check out especially the social outings and workshops – many are held at headquarters in Watertown, but there are several in Canton (held at the offices of Enable, Inc.), as well. 

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