Why Do People Tell Me I Am Blessed?

Every one of us is on a journey through life, and we each encounter the joys and sorrows accompanying our travels.  When you have a child with special needs, the journey becomes a bit more isolated, a bit more complicated in ways no one save another parent in the same situation can fully understand.

Life during those first few months
My son Eric was born in 1991, the youngest of three children.  He was healthy, and throughout his first year of life, smiled, cooed, crawled and walked, and I proudly posted the stickers for each accomplishment on his baby calendar.  My life was progressing just as I had imagined, three healthy children, my husband Joe in school to be an automotive technician, and a career working as a physical therapist in the schools in Buffalo, NY, where I served children with various disabilities.

Subtle Signs
Around the age of 20 months, Eric began to change in ways that, at first, were subtle, and not too worrisome.  When he was watching his favorite Disney movies, he would jump up and down repeatedly at his favorite parts, and flap his hands.  Tiny little alarms sounded in my head, thinking of the children with autism I serve at school who also demonstrated this type of behavior when excited.

Significant Signs
Soon there were other more worrisome signs of changes in Eric’s behavior; his words that he had learned, "mama", dada, light, disappeared, and he became silent, stopped interacting with his older siblings, and was unable to settle down at night time.  Eric became engrossed in shifting sand through his hands when sitting in the sandbox, and was starting to avoid eye contact when we tried to play with him. I knew, as all parents know with that gut instinct we possess, that something was wrong, though I never suspected autism. 

Common Misconceptions
This was 1993, before the epidemic of autism was beginning, and I believed, as many did, that children with autism were like robots- non- affectionate, avoided touch, and that their mothers were cold, "refrigerator" mothers, causing the children to be autistic. When we brought Eric to the pediatrician, he brushed off our concerns, and implied we were babying Eric, and as he was the youngest of three, we were doing all his talking for him, and were too busy to give him time to speak.  He recommended speech therapy for Eric, and I was both relieved, and hopeful that this was a simple remedy.

Guilt and importance of professionals having autism specific training
It was also the first time, of many, many more times, that I would feel guilty, and blame myself for what was happening to Eric.  It was also the first time, with many more to come, that my observations and concerns as a parent were dismissed so nonchalantly.  We immediately started taking Eric to a speech therapist, who also believed that we had been spoiling Eric; not making him talk before we gave him his sippy cup, or cookies, when he was indicating that he wanted them.  The speech therapist insisted we not give Eric anything without his verbalizing his wants or needs first.  The guilt was reinforced, and I felt like I was failing my youngest child.  Thus, the battles began.  Eric would come to me and hold up his cup, and I would force his little face to look at me and I would repeat over and over, "juice, juice, say juice".  Eric would become upset and cry or tantrum, and we both would become frustrated.  When I reported this to the speech therapist, he said, "Stop spoiling him, Mom!"  I will never ever forget those words.

Trust your parental instincts
Parental gut instinct kicked in again, and I took Eric to a developmental testing center, where a psychologist, speech therapist, audiologist, and occupational therapist did testing.  Eric was viewed through a two-way mirror, and when the audiologist tested his hearing, Eric made no indication of hearing voices, including mine or my husband’s.  He seemed to be deaf, as he obliviously stacked his blocks over and over, ignoring people calling his name, different music, and toys that made noises.  However, when the audiologist played the sound of thunder, Eric quickly altered and looked up.  No, Eric was not having trouble hearing.  What was the matter, then? The team told us they would compile the results of their testing and meet with us next week.  I remember thinking that Eric could stack blocks, and liked a certain toy that made bubbles, so he was fine.  The hand flapping was just his way of showing excitement, right?  We have to try harder to get him to talk, I told my husband as we drove home.  Well, we tried, and failed miserably.  I am so overcome with sadness now, thinking of how poor Eric must have felt as we withheld his favorite things from him, trying to make him talk.

The diagnosis
The tears, anger, and frustration are as vivid to me now as ever. We returned in a week, and the team sat us at a long conference table:  Joe and I, and several professionals with papers, (this was pre- laptop age). The blur of what was said remains, but the one word, autism, stood out, and blared loudly above all others.

I was shocked and numb.  Autism?  Impossible.

Eric loves to be cuddled, and laughs when we hug and play-wrestle with him.  Children with autism are robot-like, with no affection and cold personalities. We went home in disbelief and shock, but my inner voice told me this was it- all the signals came together: the obsession with sand, the loss of language, the ignoring of others, the avoidance of eye contact, the sleepless nights.

Grief, with its multi-layered stages, encompassed Joe and I, and the next few months were a blur of numbness and devastating sorrow, with gut wrenching sobbing alone in the car as I drove to and from work. Work. Who cares? Nothing mattered.  All was hopeless.

What does autism look like for us?
My son had autism.  Who was he now to me?  He was a stranger.  I didn’t know this two year old who wouldn’t look at me, wouldn’t play with me, wouldn’t talk or call to me.  He began spinning pan tops, or anything round.  The noise of pan tops spinning over and over was torturous.  The embarrassment of tantrums in the store was something I was horrified by, and the stares of disapproving people brought me to tears over and over.  I was angry at Eric, and wished him gone.  I wished he had never been born.

I called my sister one night after a particularly rough day sobbing, and saying, "I don’t want him anymore."  To her credit, my sister did not react judgmentally, and simply whispered, "I understand."  Again, a first: the simple kindness and compassion from people that I now rely upon to help me through so many difficult times.

When Blanche at the end of the movie, "A Streetcar Named Desire", states, "I have always relied on the kindness of strangers", I feel the overwhelming truth in this melodramatic clichéd statement.

Raising Eric has been a constant source of chronic stress, frustration, with feelings of hopelessness, and anger.  But, along with these sad and negative feelings, there have been beautiful moments of sheer joy, and the compassion and simple acceptance of people have meant so much to me.

What helped me
The wordless hugs from strangers in stores when I am crying and trying to hide it as I attempt to get a tantrumming Eric out of the store, the sympathetic smiles indicating it’s ok that Eric is excessively loud at the mall, and the friends and families who do not mind at all if Eric tears up a book at their house, or throws a potted plant in their just-cleaned pool; these are the actions and words that sustain me.  So many negatives are forgotten and the simple positives are the memories I cherish.

Celebrate the “small stuff” takes on a new meaning

• The thrill of his finally using the bathroom independently (at age 6), when my older two children, my husband, and I jumped up from the couch as we heard him flushing the toilet to run to the bathroom and cheer in genuine sheer joy is one of the many moments that are so monumental to us, though quite ordinary to most parents.
• His first wave from the bus to me, (age 13), after years of waving at him only to see him stare back at me, his signing “more”….so many events that brought such happiness and overflowing love for Eric.

Though I continue to deal with so many challenges now, and frighteningly, more in the unknown future, I still smile and laugh at these memories. It is this compassion and empathy I have been blessed to be able to use well with the families and children I work with in the schools.

Give parents a break….
As a pediatric physical therapist, I never was able to "get away" from Eric’s disability.  I saw it daily in my work, and dealt with parents facing the same difficulties and sadness at IEP meetings.  I learned that the majority of parents are doing the very best they can, and we all fail at times.  I failed when Eric would bring me a diet cola from the refrigerator to open for him, and I did not stand up and go retrieve the communication device he was supposed to be using to choose the cola from.  I was too exhausted from the daily grind that ALL parents face:  making lunches, going to work, helping with homework, bathing the children, cleaning, cooking, errands, the various sports activities my older children were involved in…..  It was simply easier to open the can of soda and hand it to Eric.  Guilt again.

IEP meeting dread
At Eric’s IEP meeting, I said we were trying to use the communication device, but inside myself, I knew I wasn’t really trying enough.  IEP meetings became hellish. They were overwhelming, and the goals seemed so impossible.  I was given plenty of home activities to work on with Eric, and I would try again after each meeting- valiantly attempting to work on talking, choosing activities, helping out with chores, on and on….  Inevitably, life was too demanding to be able to do all, and the need to take care of my other children, spend time with my husband, work, and make sure you take time for yourself….! Ha!  I used to laugh when I read that advice from the exhausting library of articles and books about autism I read constantly.

Aggression, weight gain and poor activity repertoire
Life became more bearable, though Eric’s challenges ebbed and flowed constantly throughout his school years, and I now realize, will remain this way throughout his life.  Aggression emerged and medications were started.  Weight gain from the combination of meds, horrible diet habits, and lack of activity progressed.  Eric is obese.  I see the faces when we are checking out at the grocery store, and Eric has a bag of potato chips.  I want to tell these people that when Eric is hungry, he is dangerously aggressive.  I have been knocked over in McDonalds by Eric because he hadn’t eaten the healthy foods I tried.  At his IEP meetings, we were encouraged to pack healthy foods, and I always did.  But I also included junk food that I know he would eat so that I wouldn’t get the notes home:  Eric had a rough day.  He attempted to bite and scratched the teacher and had to be restrained.  I have notebooks full of these daily notes of Eric’s aggressive behavior.

Professionals-please note
Every now and then though, I would get a note saying Eric had a good day, with an example of a happy thing that had happened.  Those notes made me want to sing out loud with happiness.  I would be so happy and high five Eric, who probably had no idea what I was talking about.  These simple words of encouragement meant so much to me, and it is this I want to convey to other professionals:  write the positive notes, say the positive things, notice the positive attributes, and most importantly, let the families know!

Advise to parents
To parents I would like to say, IEP meetings are overwhelming, and oftendepressing, or charged with emotion.  Ask for the reports and goals ahead of time, and be prepared with what changes you would like to make.  Above all, be honest.  If you haven’t been following through on a home exercise program, tell the therapist.  Any therapist that would blame you is wrong.  Most of us are parents, and understand the stress of everyday life, let alone the added stress of raising a child with a disability.  Though everyone else there at the meeting may seem like an expert that knows more than you, always remember you are an expert, too.  No one can match you in your expertise on your child.  You are an equal part of the team, and you are allowed to question, agree, or disagree with any goal.  As a parent, I was always very thankful to the therapists and teachers working with Eric, but I also was able to question their goals in a polite and respectful manner.  Working together for Eric was always my goal, and I was as important a part of the team as anyone else there.

Advise to professionals
As a therapist, I feel that IEP meetings are crucially important, and I make the best attempt to attend every one, out of respect to the parents. These meetings are so vital to understanding where the parent is coming from, what his/ her goals are for the child, and how we can collaborate together to do what is best for the child.  It is NOT a time to do my paperwork, chat in sidebars with others, or run in and out as if I had more important things to do.  Though it is one of many meetings for me, it is perhaps the parents’ one meeting, and very important to them, and I should treat it accordingly.  The tedious paperwork associated with meetings should not interfere with us acting as a team with the parent in determining a course of action that is a result of mutually respectful collaboration from every member of the team, including the parent.

Life as an adult
Today, Eric is still living at home at age 25, waiting and waiting for an appropriate placement in a group home.  The lack of resources for adults with autism is so discouraging.  Though we had found a reputable group home that he lived in for two years, we made the decision to bring him back home with us when unexplained traumatic injuries occurred.  Eric cannot talk, and his safety is our priority.  It is very hard to fully trust people, now more than ever, and the fact that I must do this causes me such distressing heartache that there are moments I break down sobbing- always alone, and then I hide it from my husband and children; I need to be strong for everyone, and this forces me to lock these feelings away, though they emerge suddenly, and often at very unexpected times.

Our prayers
Though I have an uneasy and tenuous relationship with a higher power, I pray.  I pray that Eric will be happy and well cared for all his life.  I pray that we will find a wonderful group home with people who want to provide Eric with the quality of life and dignity he is entitled to as a human being. I cannot think too much of the future- it is too frightening.  Dare I admit that I pray that Eric dies five minutes before me, so that I know he is safe forever, and I know I will be with him and have no more grief over his well-being forever.  Parents of children like Eric may not agree, though I suspect many will, and society will not allow us to be honest in thinking this, let alone judiciously admit this to our specially chosen loved ones, who can only look at us silently, wordless in their lack of understanding, but accepting that I alone am dealing with feelings they can only try to comprehend.

Meanwhile, we do the best we can.  We take several trips to Walmart for dish soap so that Eric can make enormous rivers of bubbles in the back yard with the hose, costing us a small fortune in water!  We are on a first name basis with the men at the dump, who call us to tell us there are phone books or bundles of newspapers for Eric, who will happily tear them in the dining room, which we have walled off and refer to as Eric’s paper room.  He attends a day program so that both my husband and I can work.  Weekends are tough, but we try to vary the activities to prevent boredom, thus causing behavior problems.

Truly Blessed
We are older, he is young and has much more energy. Eric exhausts us.  But the moments when he is delighted by the chicken sounds Joe makes to make him laugh, his exuberance in the mall when we walk through Dave and Busters, and the huge smiles as he sits in the massage chair there, the innocence and complete indifference to strangers’ stares as he loudly voices his pleasure and flaps his hands, and, most special of all, when he leans his face towards mine to look me in my eyes and murmur his happy sounds as if to say "love ya, Mom!"; these are life’s most precious gift.  My son Eric may not be able to talk, but he has shown me the power of love in ways unimaginable to many, who see only a disabled young man.

A tiny kernel of truth in me is compelled to admit, yes, I am truly blessed.