Homeschooling Children with AIDS
By Peggy Marengo
(Editor's note: Peggy Marengo, and Alison Smith, both single mothers, are giving their time and talents to caring for these beautiful children. Some of the little ones pictured above have AIDS and are affected for life by our society. However, as you will read....life goes on for them. Please remember Peggy and Alison in prayer as they are raising the children God has blessed them with.)
Winter 1994 /95
Four of our 7 adopted children have full blown AIDS. When we see the intensity of the children's challenges it is always amazing to me that we're able to accomplish anything. If we are constantly focused on their challenges, instead of allowing then to live their lives to the fullest, we would be emotionally overwhelmed and feel helpless.
Schooling is a year round process in our home. Because we are dealing with chronic illnesses and unexpected hospitalization we often go for days at a time when structured teaching is minimal. Learning is a constant process and doesn't stop and start just because a text book is or is not involved. The children benefit tremendously from the educationally rich environment that we provide.
Each of each of our children's needs are so unique they do require a great deal of individual attention. It is helpful to recognize that a great deal of what is taught in schools today as 'special education' & 'life skills' can be learned easily just by living life.
If our children were in public school they would spend much of their time being shuffled around. Their classes would include "life skills", "social studies", "remedial classes", "enrichment" etc. We use a multi-media approach - computer, video's, games, manipulatives, job cards, flash cards, tapes & tape recorders, work books, puzzles, repetition, and good old fashion rote.
Even if we are hospitalized or just too unwell to pick up a pencil there's always some skill to sharpen or maintain. If the children are just too unwell to focus on learning, it's then that we focus on health, social skills, manners, feelings, maintaining skills, spiritual support, mortality, self worth, and positive attitudes.
When AIDS/wheelchairs/deafness, pain, etc. is a fact of life, children don't need hypothetical workbook situations to facilitate learning. They already know what it's like to have the particular challenge. They need to learn positive coping mechanisms that will allow them to grow emotionally yet remain empathetic to others.
Our family is unique in that we have more then one child with a particular terminal illness. Ordinarily when a sibling becomes overwhelmed with their sibs' illness they can be assured that they will not suffer the same. Not so in our house. They know that what their sister suffers will sooner or later be the same for themselves. This is very difficult for them. They must not only cope with loss but anticipatory loss for themselves as well as their siblings.
Luci is the oldest of our young family. At 10 1/2 years she has outlived her six month prognosis by 8 years. She was born with full blown AIDS in the dark ages of this invasive disease. The virus has been calcifying her brain since 18 months of age stealing vital skills through dimentia. These skills she has to arduously relearn - if she is able to regain it at all.
The list of what she deals with on a daily basis is mind-boggling - the pain alone is more then what most adults deal with in a lifetime. Yet, she has a zest for living and learning that is amazing to see.
She came home to us after living in the hospital for two years completely institutionalized, unable to walk, talk, crawl, or even eat. Within six months she had made tremendous progress is all areas. The hospital staff loved her dearly but they were not parents. They went home at night, had weekends off and took vacations. They were not there to protect her, they were not bonded. With any of our children we have noted they do not begin to progress in significant ways until they are bonded. Today, Luci is a socially skilled and empathetic young lady. The virus has been in the speech center for many years now so language is not one of her strong points.
Ida and Lotti joined our family when they were 3 months old and just leaving the hospital. They are not biologically related at all but they came to us just a week apart with their birthdays just 3 days apart.
Because they had been exposed to exposed to extremely high levels of drugs and alcohol in utero they were tiny and quite delayed. Keep in mind that this was the dark ages of HIV and not all hospitals were educated - the babies had been severely isolated and had never felt human touch except through gowns, gloves, and masks. They had even been isolated from the main nursery so they were even deprived of the sounds and cries of other infants. Plagued with the various HIV related issues, they were slow to develop, having tremendous separation anxiety. Lotti had made herself voluntarily blind to deal with the severe stimulation deprivation of her infancy.
As months passed the bright little pepper that is truly Lotti began to peek out and her vision began to improve. Today Lotti is left with a mild Nystagmus (constant involuntary, cyclical movement of the eyeball) that she has learned to manage fairly effectively. Both girls are now very articulate 7 year olds with quite sophisticated tastes in music and hobbies. Unlike Luci, who functions at a 1st/2nd grade level academically both Ida and Lotti are age appropriate in their school work.
Molly came to us as a one year old, a total care baby on feeding and breathing machines. She had already had Wilms tumor and a kidney resect. We were told that we could only expect to give her custodial care until the end of her very short life. Within 3 months we had Molly off of all artificial support, hoping to at least increase her comfort and ease her pain. It is true that Molly is severely impaired and quite fragile - her remaining kidney is pre-cancerous. Yet, as Molly bonded and was allowed to experience life, independence, real food, and was allowed to interact with her siblings, she developed into a bright and feisty little girl. Molly is develop-mentally challenged but she has grown beyond all medical prognosis and developmental predictions. Her doctors just shake their heads in amazement as she learns to talk, nag, and act like a 6 year old.
Beatricia, was the only survivor of a very premature set of twins that were severely drug exposed. At 3 months of age and barely 5 lbs., with cranial and spinal anomalies, hearing impaired, AIDS, and failure to thrive, she came home to us.
Her prognosis was poor. The Docs doubted that she'd ever hold her head up - never mind walk. Luckily we never told her! Here she is now, charming a room full of people in under 5 min.
Unfortunately, she is almost constant pain, which will only get worse. This year she has made wonderful progress developmentally. She makes her letters sideways (mid-line brain defect), but she is dedicated to learning them. She does need the material presented backwards and forwards before she can process it but she is a typical kindergartener. Her pain causes her to be short-tempered and intolerant but she is sweet and loving.
In a traditional school setting she, like other children, would be seen in the light of their challenges rather then their abilities.
We originally decided to homeschool the children because of their medical issues. It is our opinion that it is clearly dangerous for a child with AIDS to have to fight all of the illnesses that they would be exposed to on a daily basis. We have seen HIV children in much better health then ours die very quickly after being put into school situations.
We are a family and we, as parents provide all care, as much as possible. In support of that one of our sons is an O.T., and comes in as mother's helper 3x a week. This allows us to provide one on one instruction. Our primary child care person has been with us for nearly six years providing us with approximately 20 hrs of care weekly plus on call care when a child is hospitalized. Our older daughters can also pick up the slack during hospitalization. Alison stays home to provide stability and continuity. So many things can go wrong at hospital when Mom isn't there.
Our most essential assets are organization, consistency, flexibility, and patience, patience, patience! We work hard on that last item, giving the children plenty of time to work at their own pace, absorbing what they have learned and being creative with the information.
Most importantly we work to maintain our faith - faith in our Maker, faith in our children, and faith in what we are doing.
Winter 2002 / 2003