28 years with Autism

 28 years with Alex

I can smile now, most of the time.   When Alex came into our small family, I was smiling all the time. Alex did not. Of course he did not because babies only smile when gas is on the move.   Then came the time Alex should have smiled at about 6 weeks and he did not. I joked with the Dr. while voicing my concern, “Well he has not seen me naked!”, or “ I have not told him something that he found amusing.”

After more months I became very concerned. I had been around quite a few babies in my life and I had nothing to compare to Alex. He just screamed ALL THE TIME! He was a very poor eater and I believe he would not have survived if he had been born to a household who did not have the time to spend so much of the day coaxing him to eat. These are called, ‘Failure-to – thrive’ babies.

I felt insecure, helpless and at a loss as to what I was doing wrong. We went back to the doctor. I demonstrated how Alex would only fleetingly look at me when I took off my glasses and held him above my head. This is not a normal thing others Mothers had to do to get their baby to look at them. Babies gaze into your eyes and study your face while you fed them. What could I be doing wrong? I had to be doing SOMETHING wrong! I wondered if Alex knew he was adopted and was I not projecting the love I had for this child, I asked myself.   At that time I had been a Mother twice before and had nearly 20 years experience. I still doubted myself, in part, due to my exhaustion.

New Mothers are exhausted. I did not expect to be so drained, after all I did not give birth to this child.

It was not until Alex was nearly two years old that I finally had a diagnosis.  Most often a diagnosis is a relief. You know what to do, how to do it and have lots of support for ‘it’. This diagnosis, although was no surprise, did not give this relief. There were no doctors who specialized in this field, no resources to tap into or groups in the area. You see 28 years ago, Autism was invisible. If you had heard of it, often it was in a very negative association. The actor, Lloyd Nolan, showed his daughter being slapped across the knees with a ruler to answer, “What color?” You may have seen another clip of this horrid and accepted method of spaying cold water in the childrens’ faces while strapped in a device to restrict all movement.

These are the memories I had while begging the doctor not to say “Autism”.

I am friends with a woman who has a son 4 or 5 years older than my son. She was given the lecture that was the norm at the time; “ Your son is Autistic because you are a refrigerator Mother!”

We are better in that the adverse training methods are no longer used, I hope, but there are many gaps and no one therapy is the perfect answer for all.

Alex no longer screams.   When he cries on the rare occasion, my heart breaks because he is still non-verbal and cannot tell me what is on his mind.

Alex is the sweetest most pure being I know. I cannot get him to hit his sister when she is teasing him. I would not want any child to hit another anyway and he knew I was not serious. He would smile sweetly with all the love he has for his sister.   I do not take credit for teaching Alex right from wrong. He seemed to know it intuitively.

Alex and his older sister have a very special bond. They both think outside the box. They think in associations. He adores her and she adores him.

28 years ago when Autism, in the form of this child came into our lives, our lives changed forever. No one suffered more than Alex. Every day he was in complete chaos. Alex did not seem to have even the basic receptive language or the understanding of sequence.

He would tiptoe to the window and stand frozen for minutes before I heard what was grabbing his attention. A plane! He exhibited this sound sensitivity in many ways. Often it was an over saturation as with his love-hate relationship with lawn equipment. He would be drawn to the window to see what was making the sound, only to be overwhelmed by it soon after. The year our neighbor bought a new trimmer and seemed to use it for hours at a time was the worst summer of all. Distracting Alex with music or bathing for hours was not an option. We had to drop everything and take Alex for a ride away from what was disturbing him. If you are a sibling you understand why our whole family had to restructure, constantly for Alex but this does not make it easy when you are a child and your needs are different from your brother or your other sister. The whole family is affected. Still it is not wonderful for the child getting all this attention either. They cannot help it. Autism is a sensory integration disorder. It affects muscle coordination with a healthy dose of mind-body disconnect. For Alex this left him without a voice. There is a fancy medical term—Apraxia, but again the diagnosis does not help if there is no therapy or remedy. Families are left with snake-oil charmers. The most they accomplish may be a complete financial hemorrhage leaving families with little money and even less hope.

Please do not think we wanted Alex to be ‘cured’ or ‘fixed’ but we did want to make his life more manageable for him.  To not live in a constant state of anxiety and fear and to understand and to enjoy life was our goal.

I am not an expert on Autism.  If you  know ONE Autistic kid—you know ONE Autistic kid. They are as different as you and I.  It does not mean either one of us need to be fixed because we are different, so it goes with Autism.

This population can have a lot to offer the rest of us.

This is where I should site all the successful scientists and others who have made such contributions to mankind, but I won’t.   I would not want to suggest that Alex has yet to invent something to help others.  However, others may invent devises to help people like Alex who are locked into bodies that do not work and may need a special device or method to communicate their needs.

Alex does not scream anymore. I do!   Do you remember the days when people would describe a deaf person as “Deaf and DUMB?” It took about 50 years for this attitude to change. This is now what is happening to the non-verbal Autistic population.  Professors teach, “down here (the lower end of the Autism spectrum)…..you have the non-verbal RETARDED”.

Sigh…..My son is smart. He has figured out some self-management skills and knows more than we can ferret out of him.  We are not smart enough to do so.  Alex waits patiently for this to happen.

He knows things we do not know how to ask. I truly think Alex can read minds. I can cite examples of why I think this.

Alex is special. Not because he is Autistic but because In Spite of being Autistic he is special.

I could go on and on about what it means to Alex to have sensory integration disorder and how it affects every moment of every day. Or how he has a lot of ‘triggers’ associated with food. For example:

Alex cannot tolerate looking at feet or shoes when he is eating.  He will gag.

Alex cannot tolerate seeing magazines when he is eating.  He will point to them and we have to take them away.

Alex will  close curtains because he cannnot bear to see the wind blowing trees while eating.

Alex cannot tolerate pictures of people (even himself and his beloved sister) while he is engaged in eating.

Sensory Integration Disorder for Alex relates to Eating (taste) and visual (sight) not working while trying to engage both senses.

This is but a fraction of the rules that dictate whether Alex feels safe or cared for or if not heeded, Alex will decline and regress.

I have touched on only a small list of his issues.

It took us years to figure out some of this . We are still learning how best to care for Alex.

Outsiders will not understand unless they take a proactive stand to learn and read about this vulnerable class of our society.

Autism Awareness has brought the term to our lips but not the understanding. We long for others to embrace Autism. Show compassion and understanding. Educate yourselves and your children. Stop the bullying by promoting kindness and empathy.   Awareness is but the first step.

Ask a struggling Mother if she needs help. I know the feeling of isolation and pain. Reach out to them to offer your support.  It could be as simple as providing the evening meal.  I bet the Mother will be so grateful she will cry.  I would have.

Alex has been to Greece, Florida and many times to California besides traveling to the Oregon beach and Washington. Depending on his age and issues, some trips were better than others. Our family has funny stories to tell along with the bad ones.

I have no advise for other families other than to make time for the other kids in your family. They need you too.

I hope my girls will some day forgive and understand it was the situation not them.  We cannot go back in time to fix things or to do them differently.  Would have, could have , should have.  The pain continues.

The good news is, Alex is doing great!  We found an agency who can support and supply what Alex needs. They understand why he cannot have a ‘live-in’ model for Supported Living.  Alex cannot tolerate even one staff in Alex’s sensory environment.

The funding is way behind what it should be to help care for those like Alex. We must be the pioneers and figure out a way to do that.   We must think out of the box like Alex does and to be creative.  We will not listen to “That is the way it is done and has always been done.” Like our cats, Alex is not of ‘herding mentality’ and we must find a way to keep him stay in equilibrium.

We are the care-givers. We need to care enough to give care in the way needed for his condition. We need to be smart enough to figure out how to do this.

Our broken country and the way it handles money will not change fast enough to help all these people. We again must step up to the plate to help raise money so agencies can focus on training and caring. It should not be put upon them to raise money. Parents can tell you who is helpful and who is not.  Be a good citizen and a better neighbor and support in any way you can. We do not need more people out on the street who cannot care for themselves. This must never happen to our loved ones. Could you put a baby out on the street?  Our society should take care of those in the states before reaching to other countries with money and resouces.   If the income the agency gets is not enough to care for the people they are trying to help, what does this say about the mental health of our country?  Are you proud of this?  Do you know about it?  Most likely you do not. I cannot believe you would turn your back on the ghosts of our society.

This was written the day before Alex’s 3rd year in Supported Living in his own apartment!

Update:

This spring Alex will be with this agency for five years!!  Alex now lives in a town house.  His staff work  block shifts and put in two days and two nights or about 48 hours at a time.  They have their own bedroom and bath to provide for this.  It is considered Alex’s sensory environment and Alex dictates all sight, sound, smells, etc. Without this Alex flounders into chaos and helplessness.

Congratulations to Adult Living Services of Oregon for providing Supported Living. You do care! Our family is warmly and deeply appreciative of your kindness and benefits of receiving your service but most of all Alex is grateful for the staff,oversight of his home, and the attentive daily care that allows him to live to the best he can be.

If you are new to this information and care to help, go online to read more about Adult Learning Services of Oregon here.. http://www.alsoweb.org/attic.htm

Or to donate, go to Supported Living at the Adult Services of Oregon web page.

Thank you for reading a very condensed version of life with Alex.

I have authored a book written in Alex’s ‘voice’ but I do not know how to import it into WordPress or how to publish it to help with costs.

Jane Lee-Sassalos

 

 

 

 

 

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3 thoughts on “28 years with Autism

  1. Jane~

    You should feel proud of what you have done to impact your son’s life. Because of your dedication, commitment, and unconditional love Alex is living a life that many experts in the past would have said never could have happened. I respect you for all your hard work and advocacy you have poured into Alex’s life. You, Jimmy and Tasia were brought into Alex’s life for a reason and because of that he has flourished. I can see your love in Alex whenever I am around him. He is an amazing you man who has impacted everyone who has met him. Thank you for showing what unconditional love really is, and for this I am truly grateful.

    Your friend
    Darrin

    • Darrin-
      You nailed it when you signed ‘friend’ instead of ‘Head of Supported Living’
      This is why you are successful. I am privileged to know you as a friend.
      See you on Tuesday for the post fundraiser Appreciation lunch.
      Best Regards
      Jane

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