Essays

 

Parenting Through the Haze of Learning Disabilities By Anonymous

Parenting is a tough job; I’m certainly not the first one to admit that.  But parenting a child with developmental disabilities is especially hard because efforts to connect with the child requires special knowledge or training; I had neither.

Expectations of what parenting is going to be like is part of the problem.  It is a profound, sobering experience to realize the dreams and hopes that I had for my child may never occur.  When this realization sets in, a good parent may turn to professionals for input on how to handle the new reality.   In my case, since we lived within an hour of Boston, I met with pediatric neurodevelopment physicians at some of the world’s most prestigious teaching hospitals in order to learn what to do and what to expect.

Histories were taken, tests conducted, observations made, diagnoses rendered.  Therapies advised. Results inconclusive. No promises or predictions professed.

So despite this less than optimistic perspective, I soldiered on thinking I could do more and better if only I tried.  And tried.  Perseverance was a value I learned in my family of origin; it would be applied to good use here.

At some point in this odyssey, I realized how complicated and mysterious living – and life – really are.  I learned the best and the brightest medical practitioners don’t have all the answers, cures or therapies known to help me do the right thing.  Our pediatrician in our town was well-intentioned but not very helpful; he knew our son was not in the norm, and he tried to be helpful but our son’s case was clearly out of his league.  A systematic disorder that my son was born with, and I faced as his father, is not something that can be easily solved or managed. My son was diagnosed with a “developmental disorder” but no more specificity.  He did not behave uniformly every day; his testing exhibited “scatter”.  Unfortunately, it was impossible to figure out how to precisely optimize his being.  There are no special words or actions, no silver bullets to resolve the matter.  He truly had special needs.

I learned about powerlessness and the limitations we had as parents when it comes to the learning disabilities, missed milestones, brain development and behavior.  I learned from educators that effort was more important than outcome or achievement; self-esteem and confidence-building were especially important concerns.  Still, I really felt helpless, because though the pediatric neurodevelopment physicians were helpful (as they see this kind of problem day in and day out)  the underlying cause and incomplete record of his situation was never fully uncovered as he was adopted. I was trying my best to do the right thing as a single parent, learn about his disabilities and neurodevelopment disorder at the same time as work in high tech marketing in a demanding position.

Nonetheless, I believe that nothing is set in stone; everything always changes; and I could learn new adaptive behaviors to manage the relationship.  Once I knew more about what was going on and what could be expected, I went about learning what I could about child development and how to adapt it to my son.

He had strengths to go along with his many challenges. I sought out activities which he could perform well in. I believed that my son could become the best he could be by being involved in activities like any child. We signed him up for baseball, bowling, fishing and soccer, overnight summer camp, Cub Scouts and Indian Guides too. We went on vacations to cities and country alike. We went to children and science and baseball museums too.  I felt he needed to be socially interactive just like any other child.

When my son was about two and a half years of age, my wife and I divorced.  (My mother died suddenly five weeks after he was born contributing to the demise of our marriage).   Since we both still wanted to be parents our divorce settlement resulted in him living in two homes, a clean 50/50 split. I had no interest in trying to be his father by seeing him once every two weeks and simply entertaining him.  I believe one gets to know one another by doing normal everyday activities.  I don’t know if living in two homes made things even more challenging for him but the reasoning was simple: by being in two homes close by, he saw both of his parents on a regular, frequent basis – never more than five days apart (except for an annual vacation or overnight camp).  It wasn’t always easy to coordinate but with only a few exceptions, we pulled it off.

But then decades later something else unexpected occurred: I learned that I too had learning disabilities.  Not just one, but two.

At about age fifty I learned that for my entire life I had ADHD and an audio processing disorder. (APD).  No wonder I was able to relate as I did to my son and his learning challenges!!

Successful Despite Disabilities

I had Attention Deficit Hyperactivity Disorder or ADHD. It is often misunderstood as a distractibility problem, yet fundamentally it’s an emotional regulation problem along with distractibility as a secondary characteristic.  I really struggle with organization, distractibility and attention.  I have difficulty following multistep directions, paying attention and following-through.  I particularly have trouble with verbal interactions, especially in groups; I’m much better in a 1;1 relationship as I can more easily control the flow and respond appropriately.  I am not fidgety or aggressive and have never been a behavior problem in school or work.

I also have an audio processing disorder (APD), a neurological condition that effects one’s ability to hear sounds properly and make sense of them for understanding.  ADHD and APD share some similarities but are two distinctly different disabilities. With an auditory processing disorder, subtle differences between sounds in words are not recognized and understood even when the sounds themselves are loud and clear.  For example, the request “Tell me how a chair and a couch are alike” may sound to someone like me with APD as “Tell me how a cow and a hair are alike”.  On one hand hearing it wrong caused me to think outside the box, but it also made for misinterpretation of simple language.  In turn I have found it may force me to need more time to process information, especially multistep directions.  Other times I may not hear correctly and lead me to ask to repeat a sentence … or I may zone out altogether.  My hearing is not the issue; it’s a neurological processing issue somewhere in my brain.  There are no medications available to help alleviate the experience.

People with APD typically have normal hearing and intelligence, however they have trouble paying attention to and remembering information presented orally.  Over many years I have learned a lot of innovative approaches and techniques in order to manage in an acceptable way.  But as I age, I ask for more time more often, and often ask for repetition of a simple statement more often.  I sometimes act as if I’m in my own little world because sometimes I guess I am.

Despite these disabilities, I managed.  I graduated from an Ivy League school with Honors and had a pretty successful career in high tech and scientific fields. I  won awards, earned bonuses and stock options and received adoration from management and peers alike.  I’m certainly not alone in Corporate America to have disabilities. John Chambers, former CEO of Cisco Systems has dyslexia as did General George Patton.  Elon Musk of Tesla is “on the spectrum” with Aspergers and others including Cher and Keanu Reeves are recognized to have learning disabilities.

Stepfamilies are Different

 In my early 40s I remarried and with my son living with us halftime and my new wife’s son living with us 80% of the time, we became a stepfamily.  Despite our best intentions and support from other stepfamilies we struggled as a stepfamily. To be honest, I certainly had my issues with it.  I guess one could say my son’s developmental disabilities were one challenge, and then there were my learning disabilities, and then formation of a stepfamily was a third challenge we all faced.

In a stepfamily nothing seemed to work as it should or expected. Unlike a nuclear family, a stepfamily usually has to deal with exs’ whose presence effects one’s own parenting.  There are not clear boundaries between one family or another especially acute as the child goes back and forth between two homes.  Relations with school and neighbors were difficult too.

Stepfamilies occur after a marriage breakup.   In this sense, stepfamilies start off in a hole.  Parental behavior is different too.  While the stepparent is responsible for his/her own child’s development, the spouse’s child’s parent has ultimate authority.  This was problematic for us as my wife worked some evenings and I picked up the boys from daycare, prepared dinner and supervised homework.  Parent and stepparent often have different styles and different opinions about parenting and may not always mesh.  Our stepfamily struggled.  Some are known as “blended families”, but as blended families, sometimes one of the members gets crushed.  On reflection I think we were all crushed, but not at the same time.  Nor were we always crushed. We had our good times and made good memories like any family unit I imagine.

Valuable Life Lessons Learned

We soldiered on as a stepfamily too.  But the school didn’t know how to deal with me.  For example I attended grade school special needs Individualized Education Plan (IEP) meetings with all his teachers sitting around the table, and next to me was my ex-wife.  I had equal parenting rights as my ex-wife as we shared physical and legal custody 50/50, but every school year I had to request to my son’s teachers and the Administration to receive the school reports, class notices and assignments along with my ex-wife.  She didn’t have to request the materials; but I as a man and his father had to do so every year.

Overall, through stepfamily parenting I feel I learned valuable lessons on how to communicate, negotiate and manage complicated relations that I may not have learned otherwise in a nuclear family.

A good friend once told me a parent’s job is to give one’s child “roots” for security and “wings” to take flight into the world.  I probably did as well as anyone could in our stepfamily; I probably did well on some things and not so well on others.  I have regrets, and have made amends, I ask for forgiveness and I forgive myself as well.

Parenting doesn’t end, I’ve realized, when a child becomes “legal” at age 18.  Parenting changes as the kids grow up, move out and create their own lives.  Developmental and learning disabilities don’t end either as the child grows into adulthood; new challenges occur.  But lessons learned lead to adjustments in dealing with them as time goes on.  Changes in societal attitudes, new technologies, scientific innovations can all help people with attention and learning disabilities evolve into better, more productive and more confident selves.  Self-advocacy is a good tool that’s more readily available as one grows older too, for managing oneself and communicating to others one’s challenges, seeking for accommodation and greater understanding.

On Head Injury By Eileen Schwartz

First it’s shock and disbelief – So many things that were effortless become laborious or impossible. You assume you can overcome it, or that it will heal with time….and then it doesn’t. Words which used to come easily now take focus and concentration – Understanding what others say is a challenge, particularly if ideas are complex or the speech comes too quickly. You realize that you can only capture part of what is said and can embarrass yourself if you repeat something already discussed or misunderstand someone’s point of intent.

Formerly a strong contributor with creative ideas and a love of sharing and teaching you find yourself shrinking into the background, afraid that others will notice your struggles, that you will lose your train of thought in the middle of an idea and then others will know. They will recognize your struggle, grow impatient with your verbal stumbling, fail to recognize that the strong ideas are still inside even if thee ideas are constipated and have trouble coming out. Yes, there is fear – fear that others will think less of you, dismiss you, devalue your ideas and statements, no longer seek you out. Better to keep quiet.

And there is shame – shame that you feel less than others, can’t perform at your previous level fear of being judged. There is pain that others are not recognizing your struggle, the effort that goes into each conversation, or into not having that conversation. It is easier to hide.

And on adapting:

It takes time. You learn to compensate. You bargain with God and with yourself. With my first head injury, there was some recovery and I made peace with the fact that I could do less, perhaps half of what I did before, before my brain would get too exhausted. I found new pursuits, rushed into spirituality and hands on healing – which took less brain power or at least a different kind where my intellectual deficits would be less in my face. And then I developed new competencies – I was told that I had become a strong energy healer, developed new friendship networks where I felt valued I took walks with my dog and communed with him, began to write and later started a writing group. Life was not bad.

And then, sometime between 2018 and 2019 another head injury or damage from a virus or drug assaulted my brain and robbed me of many of my gains and other faculties. I found myself unable to keep track of more than one thing, perhaps two things at a time when lucky. I would lose the thought in the middle of a task, couldn’t find where I had placed things or remember my intention….or even parts of my history. I could only recall things if someone cued me first – yes the ideas and thoughts were still inside, but I couldn’t access them independently. And then I found out that I couldn’t access memories, unless cued. When trying to plan or make decisions I was unable to recall and , keep in mind, and weigh the various factors involved in making a plan or decision (something I previously excelled at). I couldn’t make decisions because I forgot what I needed to consider. I became paralyzed. And at home, I was struggling so hard to compensate for this new flood of difficulties that I was unable to relax or find joy, or truly connect to someone. I spent that bulk of my time in physical and psychological pain. My partner increasingly took over in ways that were different from my desires. I became increasingly despairing and distant. Ultimately for that and other reasons, my relationship of 30 years failed.

As I live in the world now, still trying to adapt to divorce and live in an isolated COVID world I find myself wondering how to be resilient and once again adapt. I realize that my functioning will be at an even more diminished level. I try to deal with the pain by denying, ignoring, telling myself that small steps are signs of progress, are to be celebrated….and then I get hit in the face with my deficits. Things sneak up on me, as I realize, that another, previously a colleague or friend, is so much faster, so much more tuned in than, so much more competent than I, that I am merely fooling myself. And then the pain is intense. I am at a loss about how to console myself in a way that will be lasting and not simply a deception. I am still working on that as I write this.

How to adapt and be resilient:

The bottom line is love and caring – I still have the capacity to do that if I’m not too depressed, I need more of that. It is important to connect with others, offer to be helpful especially on good days when I feel capable. It is important to stop hiding, to be honest with others about my struggles, without leading with feeling sorry for myself.

Even though my skills are diminished I still have a love of music. I try to engage and absorb myself in the melodies without being too judgmental about my slowness or deficits in playing. I tell myself that music is good for my brain, that I should stay with the playing even though it’s frustrating and difficult because it will help the neurons to connect. And the melodies and musical vibration bolster me.

I exercise, to reduce stress and improve blood flow to my brain. I immerse myself in nature, which is particularly beautiful this time of year (and draws me outdoors outside of my despair and loneliness). I call others when I need to connect and get help pulling myself out of my depression. On “good days” I acknowledge and celebrate my skills that still remain– my sense of humor (when I’m not too depressed) my curiosity about the world in general and about others,. There is my desire to know others and help them on a deeper level (left over from my therapist days). I acknowledge and celebrate my continued ability to conceptualize. So some things remain and are strong. I wonder if that will be enough to help me find a new future.