How to make lemonade out of lemons – even when the lemons are bitter
Alexis age 11 - at school Alexis, age 30, and Joe in Mexico
How to make lemonade out of lemons – even when the lemons are bitter
Lesson One: Trust Your Instincts –
When Alexis was born in 1978 I was told by the attending pediatrician that she was fine, even though the delivery had been difficult. She was not diagnosed until 9 months later – although I always suspected. But by that time I was used to seeing her as a normal baby with normal baby needs. Besides, I was at that point working towards a Ph. D. in Developmental Psychology so I was oriented towards meeting developmental needs, not special needs. An incident which occurred shortly after her diagnosis as blind and “severely developmentally delayed” pushed me even further in that direction.
I went home from that specialist appointment devastated, as anyone would be. However, I quickly began considering our options and exploring available resources in our area to help people like my daughter. Within 2 weeks a ‘developmental specialist’ arrived for an assessment interview to begin preparing a home program for Alexis. It was then that I realized I could not trust the system to provide and would have to seek out at least some of the answers myself. Following is the story that emerged from that first intervention which began a few weeks before Alexis’ first birthday. The story was written seven years later but the painful experience was still fresh in my mind.
How Can I Reach Her?
February 1985
My daughter is about as handicapped as it is possible to be—and still live. She has a serious seizure disorder, cannot even roll over, let alone sit up, has no functional use of her eyes, hands or mouth for communicating, and she also has numerous food allergies. Yet there is something about her face that won’t let me give up on her.
Alexis started on a home-based infant stimulation program shortly after her official
diagnosis of ‘severe developmental delay’[i] at nine months of age. The teacher came in one morning a week to outline for me various motor activities and data collection methods I could use with my daughter to facilitate her development.
Each session began with this woman walking briskly over to Alexis who was lying on her stomach on the floor. She lay on a thin, flannelette-covered foam mattress pad to keep her from banging her teeth when her head dropped, as it frequently did. This was the position I had been advised by a hospital physiotherapist to keep her in in order to hopefully strengthen her neck muscles so she would eventually be able to hold her head up independently.
An “appealing object” would then be dangled in front of Alexis’ nose and the teacher would say brightly, “Alexis, look!” Alexis’ response was always very prompt. As quickly as her poor motor control would allow, she would turn her head away from the “brightly colored toy”. Undaunted, the teacher would then dart over to Alexis’ other side and repeat this command. But again Alexis would turn her head away.
I observed this charade being repeated up to six times in a row, before Alexis became too tired to turn her head anymore and resorted to closing her eyes, rubbing her face in the mat and moaning.
“She is trying to block out an unwanted stimulus”, I explained, in an effort to translate Alexis’ response.
“That is a subjective interpretation of her behavior!” I was told.
During the week between teacher visits, my assigned task as teacher substitute was to try this same exercise with Alexis, as well as many others—eye focusing, auditory stimulation, hand clapping, rolling—with no greater success. In addition, I was obliged to keep track of each trial on little charts for the teacher’s records. I can remember few experiences in my life that have caused me such a deep and intimate sense of pain as the marking down of the sign for failure again and again and again on those charts. With every stroke, the prognostications I had been given by the medical experts came roaring through my head: severe, hopeless, no remediation possible, should not be maintained at home, pointless, pointless, pointless.
Alexis made no progress in the cognitive development portion of that program. Her sole achievement was in the area of toilet training, that I had initiated before she was a year old, much to the disgust of the teacher who considered it to be an “inappropriate task”, too sophisticated for her. But I persevered. Alexis would fuss; I would say, “Alexis, want potty?” And she would then stop fussing. I would sit her down on the floor in front of me on her little plastic pot holding her close with my arms cuddled tightly around her floppy little body. She would then relax and frequently be successful in her efforts. On those occasions I would tell her what a good girl she was as I cleaned up. Then I would hold her in my arms and Alexis would cuddle right in and smile and chortle. Often, I would look into her sweet little face and see there an expression of pride and satisfaction in having pleased me (but of course I am “being subjective” again).
This toileting program, which was admittedly quite time and energy consuming, went totally against the teacher’s grain. She assured me that I was imagining Alexis’ success and that I was placing my own ego needs and sense of personal gratification ahead of the orderly and realistic development of Alexis’ intellectual potential – which could best be advanced by faithfully following the program she had laid out for me.
These remarks stung deeply. They challenged my sense of professional pride in what I had been able to accomplish with Alexis. But what they did to my sense of self as mother was far worse than that. Still I persevered.
Asking Alexis to “do something”, watching her sensitive face as she tried to do what I asked, seeing her look of pleasure when she succeeded and I praised her, made me feel close to her in a way that had not been possible before. Strong waves of love and pride and compassion washed over all the negative feelings of sorrow, resentment, frustration and self-pity that had marred my relationship with her since her diagnosis.
In those moments, my mother’s sense told me there was somebody there, a real little person who was mine to develop and guard over. But other times, marking the sign for failure over and over across endless rows of endless charts, I felt only anger and pity and even contempt for this child who took so much and gave so little. As a psychologist, I also felt considerable revulsion towards this exercise that was anything but a motivator for me, the so-called “primary care provider” in this child’s life.
By the time Alexis was 15 months old she was completely bowel trained and had frequent bladder successes as well. I began to notice that, if she was seated in her highchair and I asked the potty question, Alexis would often respond by flinging up her right arm from the elbow. I was quick to share this observation with the teacher, always anxious to provide some evidence that Alexis’ toilet training was not just “training the mother” or “habit-training at best”, as she had so frequently said. The response I received was not what I had anticipated, however.
My relationship with her had always been marked by a measure of condescension on her part. It was clear to me that I was perceived as a ‘difficult mother’ with pretensions of professional competency in an area where I was neither particularly competent nor capable of objectivity. But all that changed now. I had gone beyond merely ignoring or undermining the program through my willful resistance to carrying it out effectively and was now actively sabotaging it.
This was her reply… I perfectly well knew that ‘hands up’ was supposed to be reserved as a signal of positive response to the command, ‘Want up?’ when Alexis was in her highchair. Furthermore, even if Alexis were capable of responding to the potty question, such a response was inappropriate. A far more suitable response would be for her to place her hand on her tummy in a downward pointing direction. Why didn’t I try that?
I decided that this time I must stop being so stubbornly defiant and must give this expert the benefit of the doubt. At least she was agreeing that I could work towards initiating a toileting communication with Alexis. I must take the risk that Alexis could make the transfer to the more appropriate sign.
For two weeks I tried diligently to establish the new sign while continuing to work on encouraging Alexis to raise both arms in response to the ‘Want up?’ question. However, there was no response from Alexis – only what appeared to me (undoubtedly, I was being subjective again) as a confused look. Finally, after discussing the matter with my husband, never much of a believer in experts where Alexis was concerned, I went back to the original communication. But it was completely extinguished and nothing I could do would revive it. Never since, have I seen that little arm come flinging up at the elbow in a meaningful way.
I have often gone over this sad chapter in Alexis’ life. Was it just my imagination? Did Alexis really understand what I asked her? In retrospect, I think she did. And I think the little bond we had established between us, her eager efforts to please me and her satisfaction when she did, were real, indescribably precious and very, very fragile.
[i] Severe Developmental Delay – In 1998 when Alexis was initially diagnosed, this was the nomenclature of the day. However, current DSM-5 categorization lists Alexis’ level of disability as F73, Profound. Specifiers for inclusion in that category involve the following: “The individual has very limited understanding of symbolic communication in speech or gesture … may understand some simple instructions or gestures … expresses his or her own desires and emotions largely through nonverbal, non-symbolic communication … enjoys relationships with well-known family members, caretakers, and familiar others, and initiates and responds to social interactions through gestural and emotional cues. Co-occurring sensory and physical impairments may prevent many social activities … as well as functional use of objects. The individual is dependent on others for all aspects of daily physical care, health, and safety….”
Diagnostic and Statistical Manual of Mental Disorders, 5th Edition. (DSM-5) p. 33.
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