My son was diagnosed with autism twice - the first time took me by surprise and I rejected it, almost as if by rejecting the news I would also reject the reality. By the second diagnosis, I had seen enough, researched enough and experienced enough to accept that it was indeed a reality. The time between each events was filled with anger, self pity and self absorption. But I got through it and was ready to hear the word the second time around.
Autism is filled with second times around. Prior to his diagnosis my son was a pretty typical toddler - he toddled, babbled, cooed, had about 20 single words, played peek-a-boo and gave lots of eye contact. After diagnosis or more precisely, after his 18 month vaccines, I literally watched my son disappear. It was a gradual disappearing act, but disappear he did.
First his interests went away - from toys to pots and pans, but not in the usual way. He developed a near perfect spin of my tops, able to spin multiple tops with the perfection of a magician, never letting one in the row stop. Then his words gradually went away, first he added fewer and fewer new words to his repertoire, then the words that he did have slipped away till finally the fated day that he uttered the last intentional word.
I can still remember all the details of that day. We were sitting on our futon in the family room watching a Sesame Street video, or at least I was watching. He was walking back and forth on the futon until the video was nearly over. At the end of this video there were 3 monkeys and Morgan stopped, sat down and said clearly. Monkeys (pause) monkeys. I was thrilled - I finally had evidence that my son wasn't autistic. The next day I tried to replicate the day - setting up the video, same food, same time and waited for the end to hear those beautiful words. Nothing. Morgan didn't utter another intelligible word for nearly a year. But when he did....
That's what I mean about second firsts. Most moms celebrate their baby's firsts one time - I was given the privilege of celebrating twice. His first words - even sweeter the second time around. I remember that day vividly as well. It was after 6 months or so of ABA therapy - 35 hours a week at a cost of nearly $2,000 a month. We had been working on saying bye-bye and leaving the house without taking off running down the street without anyone with him. It had not been going well. I had tried over and over with the help of his ABA consultant and he just couldn't seem to wait to get out - he would tear off like a streak of lightning down the sidewalk toward the street. David would then grab him and bring him back as often as he ran away. I was getting pretty despondent and wondered if he would ever get it. One day David suggested that Morgan's sister, Geneva give it a go. I gladly said yes as I was tired of being disappointed and wearily walked back inside. The Gods were surely smiling down on us because instead of tearing off, he allowed Geneva to hold his hand. When he got about half way down the walk, he turned around, looked up at me and said "bye,bye mama" and gave me his Queen of England backwards wave.
It was as if the sun had just broken through a wall of dark clouds and a chorus of angels were singing. He spoke his first words - for the second time. Since that time we've had lots of second firsts - first kisses (Geneva also an integral part of this one), first peek-a-boo, first successful hair cut, first bike ride, first trip down a slide, first time in a pool - the list is endless and they continue to come, though not as often as he's gotten older.
Second firsts - one of the blessings of having a child with autism. Of course if I had to choose, I would choose only once, but our seconds have been sweet. As I've often told my friends, autism is like the best club that I never wanted to be a member of, but now that I am - I will continue to relish all of my son's firsts, be they the first or second time around.
Wednesday, May 27, 2009
Monday, May 25, 2009
ATAA - Feel Good Legislation or Potential Resource?
One of my favorite sites to peruse is Library of Congress Thomas Guide - http://thomas.loc.gov/. The search function is fairly easy to use and it also has a thorough archives section allowing you to search for earlier versions of legislation.
Right now I'm following the Autism Treatment Acceleration Act (HB 2413, S 819). The first bill is sponsored by Rep. Michael Doyle, the second by Sen. Richard Durbin. When I first visited the site on May 15, very little information was available other than the title and that the bill had been read. Since that time quite a bit is available and the bill appears to be quite ambitious.
If passed it will provide for a national network allowing access by parents, medical practitioners, educators and other professionals in the field. It will provide for comprehensive services for school age and adult children as well as training opportunities parents and service providers. Finally it will also supplanting state insurance legislation by requiring coverage for ASD nationally.
In fact both the House and Senate versions of this legislation describes a perfect world for parents of school age and adult children with autism. The one line that is the fly in the ointment is the most important section on appropriations - which we all know is the lifeblood of any legislation - There are authorized to be appropriated for fiscal years 2010 through 2014 such sums as may be necessary to carry out this Act. Herein lies the rub. If passed without an actual dollar amount or if the dollar amount is woefully inadequate, then this idyllic world crashes and burns and morphs into wishful thinking and feel good legislation - designed solely to make us believe that our legislators feel our pain, just not enough to spend any money on.
Right now I'm following the Autism Treatment Acceleration Act (HB 2413, S 819). The first bill is sponsored by Rep. Michael Doyle, the second by Sen. Richard Durbin. When I first visited the site on May 15, very little information was available other than the title and that the bill had been read. Since that time quite a bit is available and the bill appears to be quite ambitious.
If passed it will provide for a national network allowing access by parents, medical practitioners, educators and other professionals in the field. It will provide for comprehensive services for school age and adult children as well as training opportunities parents and service providers. Finally it will also supplanting state insurance legislation by requiring coverage for ASD nationally.
In fact both the House and Senate versions of this legislation describes a perfect world for parents of school age and adult children with autism. The one line that is the fly in the ointment is the most important section on appropriations - which we all know is the lifeblood of any legislation - There are authorized to be appropriated for fiscal years 2010 through 2014 such sums as may be necessary to carry out this Act. Herein lies the rub. If passed without an actual dollar amount or if the dollar amount is woefully inadequate, then this idyllic world crashes and burns and morphs into wishful thinking and feel good legislation - designed solely to make us believe that our legislators feel our pain, just not enough to spend any money on.
Sunday, May 24, 2009
Marriage - How Badly Can We Suck
Now that domestic partnerships are being signed into law for gays and lesbians, I think that it is time that heterosexuals take a good look at our own institution of marriage. That’s right - marriage – a social experiment long past needing a make over. We’ve given it a good millennium or two and the jury has long been in – we suck at marriage in it’s current state. So how about we re-visit the institution and it’s terms. When I say we, of course I mean Americans. I also think that as a whole, we have some serious self esteem issues. Re-vamping this tired and broken institution could be a real ego booster. Our stock abroad would soar, or at least improve a bit.
First – marriage in its current state primarily benefits the husband – in hetero unions. I have high hopes for gay marriages, I hope that they set the standard in long term commitment. I know from experience what I speak because my ex-husband didn’t believe in marriage. I was married – he wasn’t. His life went on as it had before and he kept his wedding bands (yes multiple) in an assortment of odd places – like the console of his car (that was later re-po’d and taken away) or at one point – on his key ring? I have no idea what that last one was about psychologically.
But marriage benefits the husband - generally speaking. I have heard tell of a rare kind of union where couples share responsibilities and enjoy each others company, laugh, dance together. I’ve not witnessed nor experienced it so I cannot confirm. It benefits the husband because it’s in our DNA to give and care for and it’s in their DNA to pretend not to see and to be disabled, dim witted or in some other way impaired – when convenient.
Yes – I’m bitter. And a bit wiser – about the farce that we wax so poetic about, incessantly called love. But that’s for a later entry. Marriage is an institution for the insane and it should be a union of like minded people who agree to co-mingle assets and body fluids for a guesstimated period of time, hence a contract.
First of all if we all know that a life time commitment to anything is just silly. Written for a time when a life sentence was maybe 30 years – we now would have to go through 3 of those today. From there the contract could be as specific or general as you want it to be. A contract between two people who agree to behave a certain way for the good of the pair or group as it expands, for a period of time, with liberal options to extend. Whether you choose to bring God into it is your preference. And as far as kids are concerned – who knows whether it’s better to expose them to a loveless, selfish experiment in long term torture OR to the rigors of divorce. Either way, they will definitely have topics to discuss in group or individual therapy.
I think that if marriage vows were written to reflect our collective attention spans we would be better at it. We would also have to revise how marriage statistics were reported. That would be a real image and self esteem booster. If a couple contracted for 5 years with an option chose not to renew – that would go in the success column. Our numbers would soar as would our reputation abroad. Wow – check out the Americans – 92% success rate – how do they do it?!
I envision a time in the distant future when this relic called marriage will be gazed at with great wonder and amazement. Picture it – 500 years in the future a father and son in a museum. “Wow, Dad – you mean people actually stayed together till they died? That would be like 130 years with the same person!” Dad - "Well they didn’t live that long way back then, son. Still it could amount to 50, 60 years. Yep. I hear tell that men would have affairs, online porn and order brides from catalogs. It was a crazy time. Now go find your fifth step sister and 3rd mom twice removed so we can go get lunch.”
It could happen.
First – marriage in its current state primarily benefits the husband – in hetero unions. I have high hopes for gay marriages, I hope that they set the standard in long term commitment. I know from experience what I speak because my ex-husband didn’t believe in marriage. I was married – he wasn’t. His life went on as it had before and he kept his wedding bands (yes multiple) in an assortment of odd places – like the console of his car (that was later re-po’d and taken away) or at one point – on his key ring? I have no idea what that last one was about psychologically.
But marriage benefits the husband - generally speaking. I have heard tell of a rare kind of union where couples share responsibilities and enjoy each others company, laugh, dance together. I’ve not witnessed nor experienced it so I cannot confirm. It benefits the husband because it’s in our DNA to give and care for and it’s in their DNA to pretend not to see and to be disabled, dim witted or in some other way impaired – when convenient.
Yes – I’m bitter. And a bit wiser – about the farce that we wax so poetic about, incessantly called love. But that’s for a later entry. Marriage is an institution for the insane and it should be a union of like minded people who agree to co-mingle assets and body fluids for a guesstimated period of time, hence a contract.
First of all if we all know that a life time commitment to anything is just silly. Written for a time when a life sentence was maybe 30 years – we now would have to go through 3 of those today. From there the contract could be as specific or general as you want it to be. A contract between two people who agree to behave a certain way for the good of the pair or group as it expands, for a period of time, with liberal options to extend. Whether you choose to bring God into it is your preference. And as far as kids are concerned – who knows whether it’s better to expose them to a loveless, selfish experiment in long term torture OR to the rigors of divorce. Either way, they will definitely have topics to discuss in group or individual therapy.
I think that if marriage vows were written to reflect our collective attention spans we would be better at it. We would also have to revise how marriage statistics were reported. That would be a real image and self esteem booster. If a couple contracted for 5 years with an option chose not to renew – that would go in the success column. Our numbers would soar as would our reputation abroad. Wow – check out the Americans – 92% success rate – how do they do it?!
I envision a time in the distant future when this relic called marriage will be gazed at with great wonder and amazement. Picture it – 500 years in the future a father and son in a museum. “Wow, Dad – you mean people actually stayed together till they died? That would be like 130 years with the same person!” Dad - "Well they didn’t live that long way back then, son. Still it could amount to 50, 60 years. Yep. I hear tell that men would have affairs, online porn and order brides from catalogs. It was a crazy time. Now go find your fifth step sister and 3rd mom twice removed so we can go get lunch.”
It could happen.
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