July 29, 2009

Living with Alzheimer’s While Raising Autism

A medical diagnosis, of any kind, can be life-altering.  A life that once offered some measure of stability would now be forever changed.

In 2005, our family received two blows to our way of living.  That April, my son was diagnosed with autism, and a few months later, my grandmother was diagnosed with Alzheimer’s.

What is very interesting about the two disorders is they both affect a person’s neurodevelopment; however, the affects are experienced at the opposite ends of a person’s life.  While autism affects the youth and how they interact with the world, Alzheimer’s typically affects the elderly (over 65) and, ultimately, their interaction with the world outside.

While my son “struggles” with how to communicate his needs in a manner that will be understood by others, my grandmother has simply forgotten who it is she is communicating with.

My son and my grandmother are fascinated with one another.  He doesn’t know what Alzheimer’s is nor does she have any knowledge about autism.  However, it is obvious to the observer that they “get” one another, that there is a deeper level of knowing.  Perhaps, it isn’t for me to understand.  When I watch them, I see purity and innocence; I don’t see two people frustrated by the cards dealt them.

Although, my son and I lived out of state for three years and only recently returned, neither is anxious or overwhelmed by the other.

Is Alzheimer’s autism… in “reverse”?  Could this offer an explanation for their intense connection?

Looking for any “similarities” between the two different abilities, I found approximately 1,850,000 search results to read.   It didn’t exactly make for light reading, but here are a few “similarities” I found in my search that you may also find interesting.

Autism Spectrum Disorder

Alzheimer’s Disease

Fastest-growing developmental disability

Diagnoses have increased 10-fold over past decade.

Often unable to handle sensory overload

Often unable to handle sensory overload

Not looked upon as “being present” or “all there”.

No longer looked upon as “being present” or “all there”.

Disorder has “robbed” individual of a “normal” life

Disease has “robbed” individual of a “normal” life

Individual often fixates on inanimate objects

Individual often fixates on inanimate objects

Repetitive, incoherent, and/or absence of speech

Repetitive, incoherent, and/or absence of speech

Individual has difficulty “reading” social cues.

Individual has difficulty “reading” social cues.

Individual has difficulty with cognition.

Individual has difficulty with cognition.

Of the similarities, a person being seen as not “being present” or “all there” is the one that makes me the most uncomfortable.  Just because a person has been “stricken” with these disabilities does not imply that they are any less than human.  They are still people who deserve to be respected.  They are here, and it is society that needs to deal with that reality.

Oftentimes, people only see the disorder/disease and not the person.  During conversation, they are spoken of as if they are not physically present, and sadly, are ignored.  Additionally, family members have a tendency to feel sorry for themselves because they now have an individual in their life that doesn’t fit into their ideal way of living.

Although, I am not the one who was diagnosed with autism, my life has changed as a result of my son’s diagnosis.  Yet, I do not feel sorry for me nor do I feel sorry for him. I also do not feel sorry for my grandmother.

When I watch them interacting with one another, I do not see two people who are miserable or unhappy in any way.  What I see are two people whose brains are wired differently than my own.  In spite of their different abilities, they both manage to pull, from within themselves, strength and courage to face each day.  I see my son and my grandmother as my sources of inspiration not as burdens or crosses to bear.

In my opinion, society has it all wrong.  I believe we must adapt to their way of living, and stop seeing and treating different as if it were abnormal or even a curse.

With the current growth rates for both disabilities, abnormal and different will quickly become the norm.

I have been raising “autism” for over 4 years, and if I were to compare my son’s disorder to my grandmother’s disease, I would say that autism, for me, is easier to live with.

My grandmother, once the pillar of strength and the foundation of my family, is now a fragile woman desperate to retain her grasp on things.

Her speech, once clear and forceful, has now been reduced to faint mumbling.  Memories of her chasing me or my siblings around fill my mind while I watch her shuffle from one spot to another.

My grandmother will not be reduced to “my grandmother with Alzheimer’s”.  I will not let the disease replace my childhood memories of her, not even those memories when she was whoppin’ on my hindparts.

Her future is not as promising as my son’s.  However, at 86, she has lived a life full of adventures as well as “foolishness and mayhem”.

Unlike his mind, hers will continue to “betray” her.  One day, she will no longer recognize herself as she gazes in the mirror.  She, too, will become a stranger.

In the meantime, my uncle will continue to ensure that her remaining days are filled with love and joy, just as I will continue to do the same for my son.

My life, and his, have been touched and changed in ways we could have never imagined.  Had it not been for Alzheimer’s or autism, neither one of us would have experienced the necessary growth that has made, and continues to make, us better people with each new day.

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