Autism · Blogs I Know · My world

Autism hope and despair and everything in between

I have a 14 year old daughter who is severely autistic.

This has been, in ways, the defining statement of my life.   My daughter is severely autistic.  This morning I was reading at Real Learning and found this video : What Kind of World Do You Want  .

This brought up so many conflicting emotions for me. earlyintervention3.jpg

Because this sentence is true and yet it is NOT true for every child.  There are some, I dare say many autistic children, while they are helped with early intervention and intensive therapy,  are not brought up to the level where they can lead “full and active lives”.   As a parent of an autistic child I latched on very deeply to the idea that if I did enough Rachel would have a normal life.   I was offered more hope than possible every year.  Finally the hope hand-outs stopped but not until Rachel was in Jr high. 

I think all parents hold onto a certain amount of guilt when it comes to “doing enough” for their children.   Everything from baby enrichment classes to SAT prep and sports, and dance, and art, and camp.  Homeschool parents get to pick up a special type of guilt being responsible for our childrens’ entire education.  We can all look back at our “parent-of-the-year” moments where we over reacted or said the wrong thing.  Our childrens’ failures in a very real sense feel like our parenting failures.  But with autism there is a deeper sense of failing.  When every story about autism published is the miracle that shows an autistic child that with love and dedication the parents where able to find the “cure” and now their child is a happy fully functioning teen or adult.  Where did I go wrong?  What more could I have done?  I have failed my child.  My child is not cured the failure is therefore mine.

My daughter is 14 and still severely autistic.  Did we not try hard enough?  Did we not do enough?  If Rachel was dealing with Down’s Syndrome would I be looking at myself in the mirror asking these questions?  Probably not, because it is well acknowledged that Down’s is a genetic disorder, there is no miracle cure.  But with autism, the causes are so elusive and the hope built up so high that self recrimination becomes very reasonable.

My thought is that as autism is more studied, as the “bubble” of autism ages that we will see many many more cases where early intervention did NOT fix it.  Where parents did all they could and still they are looking at the teen years with autism as a very real part of their child’s life.  I don’t exactly resent those parents who have found success with early intervention and intensive therapy, but they speak  very loudly and the world likes to listen to them.  Those of us with sadder stories speak quietly or not at all.

But we need to speak.  We need to start speaking to one another and to the media at large.  Just as our children needed money and research and acceptance with their diagnoses and early intervention they also need as adults.  They need safe housing, they need law enforcement to be trained so that tragedies are avoided.  We need laws changed so that our  adult autistic children can receive funds for their housing and treatment without parents loosing their parental rights and the right to advocate for their children or make decisions about their lives.  These are problems, real problems, they need addressed every bit as much as early treatment.


Lenten Sacrifice

I gave it up for Lent.  It is almost cliche anymore isn’t it?  I don’t care I still give something up for Lent.   There are two approaches that I have taken to the Lenten sacrifice and they both seem to work well. The first is to give up something I enjoy, just for the sake of a little bit self-mortification. The other is to give up a bad habit.  Overall I favor the first method.

Lent is a time of fasting and introspection.  Ideally it is a time to dwell closer to God in preparation for Easter.  By giving something up, usually something that I would do every day, I help remind myself frequently of the reality of Lent.  In years past I have given up Chocolate, coffee, internet “play time”, television and other things that I know I will miss everyday.   Each time where I would have reached for the coffee or flicked on the TV I am reminded that for this short time I am doing something else, focusing on my Savior more deeply.

I have tried to use Lent to help jump-start getting rid of bad habits, but I find that this is slightly less “doable”.  Mainly because it somehow doesn’t feel like much of a sacrifice somehow.  The other problem is that I find myself falling off the wagon as soon as Lent is over.

Fun · Lent · Uncategorized

A very early Lent

If you think Lent is really early this year you are correct.  Easter this year is nearly as early as it can be,  as you probably know Easter is celebrated on the Sunday after the first full moon after the vernal equinox, or the Paschal moon.  Lent begins forty days before Easter.  I was reading these interestesting facts about the date of Easter at Wikipedia:

In the Western Church, Easter has not fallen on the earliest of the 35 possible dates, March 22, since 1818, and will not do so again until 2285. It will, however, fall on March 23 in 2008, but will not do so again until 2160. Easter last fell on the latest possible date, April 25, in 1943 and will next fall on that date in 2038. However, it will fall on April 24, just one day before this latest possible date, in 2011.

The cycle of Easter dates repeats after exactly 5,700,000 years, with April 19 being the most common date, happening 220,400 times, or 3.9% compared to a mean for all dates of 162,857 times, or 2.9%.


 So, yes this is really early for Lent to start.

Blogs I Know · rants · Uncategorized

A thin line

There is at times a thin line between what is right and what is wrong. As Catholics we have centuries of moral theology, direction, logic, scripture, tradition and the living breathing magisterial teaching to guide us in navigating even the most baffling questions and sometimes we still have to pick carefully through the jetsam that whirls around us as science presses ahead with the question of “can we” often trumping the more important “should we”.   A few months ago several friends and I were commenting that as we age we find ourselves more and more accenting to the Church’s judgement on issues of moral teaching and dogma even when we are not intellectually convinced.  All out us have grown tired of inevitably being proven wrong in the long run.   We had each had an issue at one point with Church teaching.  We had, all being educated and sensible creatures, put our minds to work and begun researching the Church’s teaching on our issue thinking certainly we would prove ourselves right, only to slowly become convinced that we were actually wrong and the Church was right all along.

But I have also seen the opposite happen.  Where someone would be so very, very certain that they were right that they couldn’t accept the reality that they could be wrong.  To my mind the most honest thing for a person in such a position to do is to say, “Oh, well this can’t be right and if the Catholic Church says this then I can’t be Catholic.”  and to quietly, or even raving, angry and nailing their complaints to the Cathedral door, walk away.   Of course it is obvious that a good number of people don’t agree.  Some even stick around and they either want to “update” the Church or they try to be more Catholic than the Pope.

The more Catholic than the Pope people bother me far worse than those who run left of center.   They confuse not only loyal Catholics but those outside the church who stumble into their rants and confuse their lay organisations with the magisterial Church.   You don’t see the media picking up “We Are Church” too often and confusing them for the Catholic Church… you do see them getting  Bill Donohue and the Catholic League mixed up with the See and read headlines about Catholics calling for a boycott only to find out it is not the church at large, but a lay organisation.  Somewhat akin to claiming that “Ohio sees massive crop failures” based on a single farm loosing its corn and potatoes. 

These thoughts were brought firmly to mind last night while reading over at  Confessions of a CF Husband where someone had posted a link (now deleted) to some crack pot with an MD behind his name and rosaries on his blog claiming that the medical profession vivisects people in order to harvest their organs for transplants.  He goes to great lengths to point out the sections in the catechism addressing organ donation and the papal edicts to the medical community addressing end of life issues… and the does his best to apologize around them.  “Brain death” is viewed as too vague, irreversible is somehow beyond his ability to grasp.  What truly shocked me was finding this Dr. had also writing in other more trustworthy Catholic sources.  His doubts and ideas presented there seemed much more reasonable, but placeing these issues in a light far more delicate and confusing than they need be. 

The simple straight forward facts are that the CCC views organ donations as a good as long as there is consent and for postmortem donations that a mortem is reality.

2296 Organ transplants are in conformity with the moral law if the physical and psychological dangers and risks to the donor are proportionate to the good sought for the recipient. Organ donation after death is a noble and meritorious act and is to be encouraged as a expression of generous solidarity. It is not morally acceptable if the donor or his proxy has not given explicit consent. Moreover, it is not morally admissible to bring about the disabling mutilation or death of a human being, even in order to delay the death of other persons.


Donation and transplanting of organs

83. The progress and spread of transplant medicine and surgery nowadays makes possible treatment and cure for many illnesses which, up to a short time ago, could only lead to death or, at best, a painful and limited existence.[175] This “service to life,”[176] which the donation and transplant of organs represents, shows its moral value and legitimizes medical practice. There are, however, some conditions which must be observed, particularly those regarding donors and the organs donated and implanted. Every organ or human tissue transplant requires an explant which in some way impairs the corporeal integrity of the donor

85. <Homoplastic transplants>, in which the transplant is taken from a person of the same species as the recipient, are legitimized by the principle of solidarity which joins human beings, and by charity which prompts one to give to suffering brothers and sisters.[177] “With the advent of organ transplants, begun with blood transfusions, human persons have found a way to give part of themselves, of their blood and of their bodies, so that others may continue to live. Thanks to science and to professional training and the dedication of doctors and health care workers…new and wonderful challenges are emerging. We are challenged to love our neighbor in new ways; in evangelical terms—to love ‘even unto the end’ (Jn 13:1), even if within certain limits which cannot be transgressed, limits placed by human nature itself.”[178]

In homoplastic transplants, organs may be taken either from a living donor or from a corpse.

86. In the first case the removal is legitimate provided it is a question of organs of which the explant would not constitute a serious and irreparable impairment for the donor. “One can donate only what he can deprive himself of without serious danger to his life or personal identity, and for a just and proportionate reason.”[179]

87. In the second case we are no longer concerned with a living person but a corpse. This must always be respected as a human corpse, but it no longer has the dignity of a subject and the end value of a living person. “A corpse is no longer, in the proper sense of the term, a subject of rights, because it is deprived of personality, which alone can be the subject of rights.” Hence, “to put it to useful purposes, morally blameless and even noble” is a decision “not be condemned but to be positively justified.”[180]

There must be certainty, however, that it is a corpse, to ensure that the removal of organs does not cause or even hasten death. The removal of organs from a corpse is legitimate when the certain death of the donor has been ascertained. Hence the duty of “taking steps to ensure that a corpse is not considered and treated as such before death has been duly verified.”[181]

In order that a person be considered a corpse, it is enough that cerebral death of the donor be ascertained, which consists in the “irreversible cessation of all cerebral activity.” When total cerebral death is verified with certainty, that is, after the required tests, it is licit to remove organs and also to surrogate organic functions artificially in order to keep the organs alive with a view to a transplant.[182]

The Church is, and rightly so, against many things such as fetal tissue research, IVF, abortion,  euthanasia and cloning.  These things violate the sanctity of life.  They reduce the human person in one way or another almost always with an eye toward utility.  They remove barriers that shouldn’t be taken away because then end results are ghastly for us all.  But organ and tissue donations do not fall into that category.  Far from devaluing life they elevate life, both the life of the donor and the life of the recipient as long as those few critical aspects are giving their full weight and importance.

Morally one life can not be shortened to save another.  Not matter how hopeless the case is, no matter how desperate the need.  Those aspects of the human body that are the seats of individuality, the reproductive and cognitive aspects, can not be transplanted.  There must be full consent on the part of the donor and/or their proxy.  When these issues are met then organ donation is a moral good, a postmortem act of generosity that extends the gifts of life and health to a fellow person.  This is a beautiful and honorable thing.

Where Dr (who’s-name-I-won’t-mention) goes floundering is in his conviction that people aren’t really dead when brain function ceases.  He even goes so far as to toss out his anecdotal proofs in cases where someone was “brain dead” and then came back.  I know God can work miracles, but moral theology and medical science do not base general practice on miracle cases.  In general if your heart will stop beating and your lungs will stop breathing with out mechanical support and your brain show no functioning then you are dead.  Lazarus was brought to life after three days, but organs sitting in a morgue for three days would be useless to everyone. 

Trying to frighten people off of organ donation by telling grisly tales of someone being cut open while still alive and feeling is reprehensible.  How many people out of fear for themselves or a love one would hesitate at that critical moment and say “no.”  Almost as bad is mixing the pot to confusion, talking about “persistent vegetate state”  a term heard frequently in the tragic Teri Schrivo case leading to the idea that organ “harvesting” might occur when the donor was capable of breath and circulation on their own.  Assertion that the papal documents are vauge  when they are only vague to someone determined to obscure them adds confusion that might keep a Catholic wanting to do good from signing an organ donor card. All this while quoting a dozen Popes and the catechism itself to prove the agendized point that organ donation is wrong in direct contradiction to what the documents actually say.

When the only thing that is keeping my heart beating or my lungs moving is something plugged into the wall… go ahead, turn it off.  In fact take any usable part of me and give it to some other person who needs it.  I feel quite comfortable that the magisterial Church would laud that choice.

Books · Lent · My world

Lent 2008

Wow! Lent comes early this year.  February 6 to be exact.  That means it is almost upon us and I still have some minor Christmas decorations to store.  (mostly my end of the season floral “to good to pass up” deals).  Each year we try to make our family Lenten sacrifice something meaningful.  We also encourage the children to “give up” something within their abilities to manage.

Several years ago we gave up TV.  It worked for us, in fact after a couple years of giving up TV as a family for Lent we gave it up entirely.  We still own a TV and use it for watching videos, but we no longer have cable or any type of “station”  — I am considering hooking up some rabbit ears so I can watch Masterpiece Theater’s Complete Jane Austen.  I am ecstatic! They will be showing all the books.  I wouldn’t resubscribe to cable for it… but a set of rabbit ears I can handle.

Catholic Homeschooling · My world · rants

Nature Journals

Yesterday we took a walk through the yard to investigate the plants that we have growing.  We were on the look out for angiosperm, gymnosperm, seedless vascular plants, and non-vascular seedless plants.  We took small samples and photo.  The children illustrated the samples on pages that will be going into their books.  Tomorrow they will work on the narration for the pages.  It should all bind up nicely.

Our history is concentrating on Ancient Greece. Christopher is working on a portfolio of various aspects of Greek society and culture.  I am using a prepared book to guide us along in this but I am finding that I have to fact check the stupid thing so much I am basically just using it for the illustrations and crafts.  It is sort of funny as one little thing caught my eye and caused me to look further. 

The book claimed that Spartan woman often married at 15 and received little education.  This is patently incorrect women in Sparta had rights that surpassed nearly every other woman in the ancient world.  In addition to being educated they also owned outright approximately 40% of the land and controlled most the rest.  The same laws that bound Spartan men to the military left the women at the helm of civil society and commerce.  They also rarely married in their teens and a woman who died in child birth was given the honor of a tombstone with her name, something reserved for men who died in victorious battle and a few other noble instances.  They were barred from war and state government only but so were most men.  Only those men who could complete the rigours demands of Spartan military service were given the title citizen.

Of course this leads to a rather sad idea.  One of two things happened here.  Either the writer and publisher of this book dropped the ball and didn’t fact check and lazily went with some source that was unreliable.  OR they knew they were fudging but for some reason like the idea that Sparta women married at 15 and received no education.  I think their biases are showing: Education can only happen in a classroom and Woman are victims.  Spartan girls did not get trucked off to school with their brothers at the age of seven.  Instead they learned at home taught by their families and tutors.  This (in the minds of some educational professionals) means they received no real education.

I have often pointed out to my own daughter that in many cultures and times she, at the tender age of 15, would be very seriously looking at becoming or already be a wife in charge of her own home and household.  The funny thing is she doesn’t look at this with horror but more a sort of awe that  a young woman would be expected to manage servants, home production of clothing and food, maintenance of the property, in some cultures the planting and harvesting of crops, perhaps wine making, olive pressing, carding, spinning, and weaving, and the care and education of her children.   I just really don’t get the odd fascination that I find over and over again with the idea that woman were pathetic chattel dominated by oppressive men who wanted to keep them stupid and worthless when history and plain common sense say otherwise. 


I would much rather my children look through history at the beauty and honor of women.  How they have worked their looms, tended their homes and gardens, made good cheese and raised their children.   I defiantly don’t want them too look at woman as historical victims.  Victims are often worthy of pity, but they usually do not inspire respect.

Caritas · Catholic Homeschooling

To keep in your prayers

I stumbled across this story today and I hope everyone can take a moment to pray for this family:  Tricia, Nathan and baby Gwyneth.  Gwyneth was born at 24 weeks, her mother Tricia has CF and is waiting for a double lung transplant.  Tricia is remarkable in deciding to carry her baby she might well have cut her life very short and made it impossible for her to receive the lung transplant she needs.