Special Things

SnugSeat

On December 23rd 2000 the whole family was traveling to visit relatives. We were struck from behind by a drunk driver. Needless to say, that great big chunk of plastic called a Gorilla carseat (by Snug Seat), that was more often than not a right royal pain, came through tremendously. Connor didn't have a mark on him. The seat and associated 5-point harness did exactly, if not more than it was designed to do. If anyone had any doubts, put them to rest. My beautiful son, Connor owes much to the people at SnugSeat. 

Thank you.

Fathers' Day 2000

Almost 50 years ago, I used to watch Roy Rogers and Dale Evans on TV. When I was six, Roy and Dale were the kind of heroes that I needed. I was still learning about the world, and their show made it easy to tell the good guys from the bad ones. What I didn't know back then was that Roy and Dale were also parents of a severely handicapped child. Their Daughter Robin had Down syndrome with lots of complications. She only lived a couple of years, but Roy and Dale loved her and did everything they could to keep her alive as long as they could. Dale was one of the first parents to speak out about being the mother of a child with a severe developmental disability, in a time when most parents hid such children. Roy joined her in telling people that Robin had been a wonderful blessing for their family. They were heroes in more ways than one back then, and just like on their show, it was easy to tell who the good guy's were. 

Now, Father's Day in the year 2000 is here. I'm looking at an old photo of Roy Rogers holding his precious daughter, Robin Elizabeth. The caption reads "Our baby Robin helped show us the true meaning of love and faith." It makes me think about what it means to be a father in the year 2000. As a father who lost a severely handicapped daughter many years ago and who does the best he can to preserve and protect the life of another one today, I think I recognize the love in his eyes. In my mind, I can still hear Roy and Dale singing "Happy Trails to You" at the end of each show. It was sweet and a little sad when I heard it back then, and now I recognize its deeper meaning for them.

Today, life is a lot more complicated. We have new heroes. In a few days, Robert Latimer's murder conviction comes before the Supreme Court of Canada. Repeatedly we are told that he was a hero for killing his own child, for sparing her from a life of misery. People tell me that he must have been compassionate, rational, and brave. Media experts tell me that he must have loved his daughter a lot to do what he did. I guess it's a new millennium and we have different kinds of heroes now.

There is certainly no shortage of them. Michael Gentry will be sentenced for involuntary manslaughter of his 15-year-old severely handicapped daughter in Los Angeles on July 6th. Perhaps this too was an act of love. Oto Orlik stabbed his 14-year-old severely handicapped daughter more than 30 times before she died in Wisconsin in 1998. How many fathers could be that rational or compassionate? Eight-year-old Justin Blair, who was blind and had cerebral palsy was beaten to death with a hammer by his father in New Hampshire.  I can not imagine the kind of courage that would require. There are 110 fathers, step-fathers, foster fathers, and adoptive fathers who are implicated in the homicides of their developmentally disabled children in our current homicide database at the University of Alberta. These heroes shot, scalded, stabbed, poisoned, electrocuted, starved, beat, drowned, hanged, smothered, beat and gassed their disabled children to death.  One father who was enraged because the hospital would not give his child the care that he felt was required, threw the child out of a twelfth story window.

Only a few cases get much attention from the media. Often the sentences are light. In 1984, Louise Brown's father killed her and then claimed that his car had been stolen with her in it. The judge sentenced him to only five years for killing his daughter who had Down syndrome because he thought that her father might have been traumatized by having a disabled child. After all, he was no threat to society and a model citizen, just another heroic father overcome with grief, who spared his disabled daughter and his beloved family a life of unimaginable suffering. The English courts were less forgiving when he came back before them in 1997.  They sentenced him to life for killing his brother by stabbing him 63 times.

Now, I confess that I am not the best father in the world. There are times when I could be a better father to my son who has a severe disability and times when I could be a better father to my daughter who doesn't. I will never be the hero who takes decisive and drastic action. I know dozens of other fathers of kids with disabilities who are also less than perfect. They will never be heroes of the new millennium. They will just face life one day at a time, usually a little sleep deprived, feeling their way unexplored territory. Many of them have much tougher challenges than I do. Lots of them handle things with more grace. Some of them are better natured.

Some of them are great writers or artists or musicians. Most are just ordinary people, but in the middle of the night, trying to soothe a sleepless child, they are all pretty much the same. Some complain that life demands a little too much from them, and others don't, but deep inside, they love their children and they love being fathers to them. Most of them consider themselves lucky. They have grown as human beings and learned new things about themselves because of their special relationship with a child who needs a lot from them. Some of them are single fathers. Most have wives that give as much or more to their families and who share the triumphs and setbacks. Some have other children who feel deprived because their parents give so much to the child with a disability, but most of these brothers an sisters are comforted to know that their parents would do just as much for them if they needed it. 

These men are not the heroes of the new millennium, far from it. They are only fathers. Their names will not become household words. They will not receive thousands of letters of support for their courage. They will not be discussed by lawyers and bioethicists. They will never become poster boys of for the right-to-die movement. They will just keep doing the best that they can for as long as they can do it.

Neil Young is the father of a son with severe cerebral palsy. He's written songs about his son. He bought a controlling share in Lionel Trains in order to get them to make adaptive controls for their trains. He and his wife Peggy worked actively worked to develop services for children with disabilities. Kenzaburo Oe is the father of a son born with a severe disability more than 30 years ago. He has written extensively about his relationship with his son and won the Nobel Prize for literature for his efforts. Others, who are not so famous, work long days and come home to take care of a severely handicapped child. These actions are not the kind of fatherly heroism that gets national attention. They are not heroes. They are simply fathers.  

Roy Rogers died a few years ago. To me, he is still a hero, in the old fashioned sense, but hero means something very different, now. For Fathers Day for the year 2000, I want to salute all the fathers of kids with special needs and to all fathers everywhere who find away to give there kids a little more of themselves when it's needed. Here's to all those dad's who will always be less than perfect and never be heroes but keep on doing the best they can. 

Happy Father's Day.
7 June 2000

Dick Sobsey is a Professor of Educational Psychology and Director of the JP Das Developmental Disabilities Centre at the University of Alberta. He is the father of a nine-year-old son who has a severe global developmental disability. 

Please feel free to share this father's day message with anyone who may be interested.

The following is a report published in the American Journal of Medical Genetics describing research done on X-Linked Infantile Spasms. It is rather dry reading, but for a health practioner contains a host of very good information.

Extract:

Clin Genet 1999 Mar;55(3):173-81

Confirmation of linkage in X-linked infantile spasms (West syndrome) and refinement of the disease locus to Xp21.3-Xp22.1.

Bruyere H, Lewis S, Wood S, MacLeod PJ, Langlois S

Department of Medical Genetics, Children's and Women's Health Center of British Columbia and the University of British Columbia, Vancouver, Canada.

The syndrome of infantile spasms, hypsarrhythmia, and mental retardation (West Syndrome) is a classical form of epilepsy, occurring in early infancy, which is etiologically heterogeneous. In rare families, West syndrome is an X-linked recessive condition, mapped to Xp11.4-Xpter (MIM 308350). We have identified a multi-generation family from Western Canada with this rare syndrome of infantile spasms, seen exclusively in male offspring from asymptomatic mothers, thereby confirming segregation as an X-linked recessive trait. Using highly polymorphic microsatellite CA-repeat probes evenly distributed over the entire X chromosome, linkage to markers DXS7110, DXS989, DXS1202, and DXS7106 was confirmed, with a maximum LOD score of 3.97 at a theta of 0.0. The identification of key recombinants refined the disease-containing interval
between markers DXS1226 and the adrenal hypoplasia locus (AHC). This now maps the X-linked infantile spasms gene locus to chromosome Xp21.3-Xp22.1 and refines the interval containing the candidate gene to 7.0 cM. Furthermore, this interval overlaps several loci previously linked with either syndromic or non-syndromic X-linked mental retardation (XLMR), including one recognized locus implicated in neuroaxonal processing (radixin, RDXP2). Collectively, these studies lend strong support for the presence of one or more genes intrinsic to brain development and function, occurring within the critical interval defined between Xp21.3-Xp22.1.

Entire Report:(710 Kb)

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