Tuesday, January 5, 2016

What to Expect From Autism - The Unexpected

There are lots of things you expect from autism.

You expect difficulty making friends.  Sensory issues.  Eating problems.  Not sleeping.  Late talking.

There are books written about the common symptoms of autism.

But, we're getting outside the common blog topics and chapter headings now.

What about deciding that hard rock is THE new obsession.  AC/DC, Led Zeppelin, Pink Floyd.  Not that I mind!  I'm cool as long as Justin Bieber is not among the purchases.  We could have Sam write the Encyclopedia of Rock history, chapter one.

Strangest ways to make money:
  - Selling raw products to Ikea.  Frankly, cotton will not grow well in Pennsylvania.  I know, I made him research the latitude and conditions at which it grows.  Did you think that all those flat boxes are made in Sweden?  Most products are outsourced to third world countries to save money.  I made him look that up as well.
  - Copying all those hard rock albums onto reel-to-reel tapes and reselling them.  Ignoring the fact that it is unlikely that reel-to-reel is going to make a big comeback, the copyrights will be a bitch to get permission on.
  - Selling water to Ikea.  Huh?
  - Becoming a rock star.  And his girlfriend will be his back up.  He doesn't play guitar.  He doesn't have a girlfriend.  Details, details.

Joining Al Quaida in 4 years.  Not because Al Quaida is good, but because he read their long range plan on Wikipedia and they predict that America will fall into chaos by 2020 because of our colonialism and they will take over.  I suppose it will be like signing up for the draft, it just happens.  However, walking up to people and telling them you are going to join Al Quaida goes over like a a lead balloon.  Or a Led Zeppelin.

Fighting gangs and terrorists by infiltrating them.  Autism should make that infiltration thing easy peasy.

Just a small sample.  I make him research each of these, because just telling him that these are crazy ideas does nothing.  He has to have reasons.  He's getting quite the eclectic education.

Autism is a Moocher

Today, I read that one way I am damaging my children is by sometimes saying I 'dislike' autism.  This is just one of many ways I contribute to their future mental health issues, I'm sure.  I've reiterated on this blog that one of the recurring themes of parenthood is the requisite guilt. I honestly believe that parents contribute to the world economy by ensuring the continued health of the antidepressant and therapy markets.

Thus, I am contributing to the recovery of world markets.

I see parents who support this premise of damaging their children instead remark on their lives with sarcasm.  Instead of saying 'I dislike autism because we never fucking sleep,' they instead make a pithy remark on yet another sleepless night.

To me that is akin to saying 'Gosh darn, I hit a deer and my insurance is going up' instead of saying 'God dammit , that damn deer jumped out and left a fucking great dent in my car.'  It is the same statement, but said with the idea that you are offending God less by using profanity substitutes.  I'm pretty sure profanity substitutes are as healthy as sugar substitutes.

I follow Robert Rummel-Hudson (http://www.schuylersmonsterblog.com/) on Facebook whose daughter was born with a brain malformation.  Interestingly, she has many of the same challenges my kids face.  She has trouble speaking and uses an AAC.  She has motor issues.  She faces bullying at school from students and staff.  She has seizures (which we have never had, but is a common co-morbidity of autism.)  She has named her brain malformation her 'monster.'

I don't know what the right way is.  I will try to let my kids address their autism in their own ways.  Isaac vacillates between calling it his super power and blaming it for all of his ten year old misdemeanors.

Nathan can't tell me yet.  I hope some day he can.

Until then I hold his autism responsible for many of his inabilities.  His inability to communicate.  His inability to control his compulsions, including the ones that threaten to set our house on fire.  His inability to sleep.  His inability to go out of the house safely without a supervising person even though he is a teenager.

Autism is not all he is.  And it is not all he isn't.  No person can be everything and autism is not the root of all evil.  He is a wonderful, caring person who watches out for another boy in his class.  He is a good friend.  He has a wonderful sense of humor.  He isn't a math wizard (in a family of mathematicians.)  He's a great listener.  He loves to cook.  He's a major snuggle buddy.

But I don't see autism improving his life.  We've given it time.  15 years to be precise.  And it's been like one of those mooching distant family members that you wish would get a job.  Start to contribute, instead of just living off your largess.  Clean up some of the mess it makes.

Monday, July 6, 2015

Words and Words

When Sam started acquiring unprompted language, through our careful programming, I wrote each one down in one of those blank books you get at Barnes and Nobles .  I started with 'ice cream' when he was around 3 and stopped when he got to word #300 at about age four.  It started with a trickle.  And turned, if not into a waterfall, into a (dare I say it) babbling brook.  I stopped when I realized I just couldn't keep up.

Nathan was never like that.

He has rarely had unprompted language.  Around age 10 we realized he had language stored in his brain.  Words he could read.  Words he could understand receptively.  Words he could use prompted (Do you want cheese sandwich or chicken?  Chicken.)  Words he could be prompted into using on Proloquo2Go - 'I want to eat...Chicken').

A few years ago we were in a craft store and he saw a restroom.  "Toilet!"  He had to go.  I was so hopeful.  But still he requires scheduled bathroom breaks to prevent soiling himself.

He has so many words locked away in his brain.  So many things to tell us.  So many needs to get met.

But the key has yet to be found.  And I don't know if it ever will be.  I want so desperately to find it.  But I'm losing hope as time trickles by.

Tuesday, April 7, 2015

How Strong, How Long?

'You are so strong.'

As if I had a choice.

As if letting my kids drift into adulthood without fighting for their rights and their future was an option.

I have been strong for 17 years.  Plus 14 years.  Plus 9 years.

Unless you subtract the times I wasn't.

The times when I hated myself for how I parented.

The times I steal for myself.

The times I am lazy.

The times I don't really like my kids.

The times I am an asshole to my kids.

Those times are probably counted at time and a half.

I think I must have a negative balance.

Saturday, January 17, 2015

Testing, Abortion and Disability Rights

With the commonplace use of the 'triple test' we have become a society of eugenicists.  The test that gives warning of an increased risk of Down Syndrome and neural tube defects (spina bifida) is supposed to allow us to plan.  I rarely hear of anyone using it to plan, but instead hear people say "If it's positive, I'll have an abortion."

I am pro-choice.  I will fiercely defend the right of a woman to decide when she wishes to carry a pregnancy, and when she doesn't.  If she would have chosen to not have gotten pregnant in the first place, she has the right to choose not to carry the pregnancy.

Also, I cannot know all of the reasons that go into termination.  Perhaps she already has as much as she can handle, or perhaps she would be in danger if she had a child with a disability.

But the most common use of the triple test, to have a 'perfect' child, is a symptom of a larger problem in society:

              -The fear of disability.

Disability is hidden.  With autism we hear of people 'losing their diagnosis.'  Of 'passing' for normal (like light-skinned blacks in the last century would pass as white.)  When taking our boys out to family restaurants, we have heard people say "Why don't they just keep them home?"  People don't want our children using up the school moneys, being school in the same classrooms using up the teacher's time, as 'normal kids.'

Disability is feared.  "I never want to be like that.  If I'm paralyzed/unable to talk/cognitively disabled, just shoot me."  "I'm so sorry you have a child with autism/Down/CP.  I could never do it."  Because you would just kill the child as soon as you got the diagnosis?  Or put it up for adoption?

Disability is criticized.  "Well, he was speeding/drinking/texting."  "She drank alcohol during pregnancy."  "God will take this away if we pray hard enough."  "The doctors didn't get the baby out fast enough."  Someone must be to blame, right?  You just didn't try hard enough to get rid of it or prevent it.

But, as we are mortal, disability is certain.  The second law of thermodynamics, that everything is tending toward entropy (and away from order) is as true for the human body as it is for anything in the universe.   On a macro scale of losing limbs, to a micro scale of genetic changes, disability will find us throughout the life span.

Disability must be brought into the open.  It's presence must be aggressively defended by law and by society. Disability must be welcomed by the schools, the workplace and society as a whole.  The disabled have a wealth of information and experience that the abled do not yet possess.  But will need in the future.

We are all awaiting our own disability, or furtherance of already present disability.

We are working in our own best interest when we promote the rights of the disabled.

We are lessening the fear of the unknown.  We are bettering our lives.

Thursday, November 6, 2014

An Open Letter to the Psychologist Who denied my Son's Hours

Dear Dr A

I'm not sure if you remember us. I expect you are very busy denying lots of requests at the end of the year.  It is such a pattern for your agency that I'm pretty sure you must earn a bonus. Use it wisely!  So, anyway, I'll remind you about us.

We requested eight weeks of an extra ten hours per week to help our 16 year old son with autism adjust to his first year of high school, and his first year of cyber school. We explained that he hadn't been able to school at home because of his brother, who is more affected by autism. So we made all the accommodations we could. I took him to my office. I help him between work and after. I love helping him with algebra, since that is my personal favorite. But explaining metaphors and racism in ways he can begin to understand is a huge joy to me.  It made all the loss of personal time worth it.

But he was still having trouble. His live lessons are in the morning, when I am busiest at work. In case you don't understand autism, auditory processing is often very affected.  And this is the case with Sam.  Because it is hard for him, he tunes out and misses the point of the lecture. We are seeking further accommodations for him with the school, but he also NEEDS to practice paying attention because as he goes on, listening for content will never go away. Especially if he goes to college, as we hope. 

He is also having trouble using the cyber school website, and could use someone who could help him with flexible thinking.  If the information is not in an email, perhaps it is on a message board. 

So we asked for 80 hours.  Two full time weeks spread over eight. I bet you get more vacation than that, don't you. Or perhaps, you get additional ones if you come in under budget?

No one from your agency attended that first meeting. No one knew what my son was like. Or what his brother was like, the one that meant he couldn't study at home. But it was denied.

And you conference called for our grievance hearing. So you didn't see his brother walk into the room and smash a lightbulb laying on the mantle before he could be stopped. And you didn't see Sam laughing to himself as he played his favorite stim in his mind and tuned us out.   You questioned us so much about our report of Sam walking out of my office without my knowledge that I actually thought you might report us for child neglect.  

But that wasn't why you questioned us.  Instead I found out from your colleague that you wrote down that we had applied for those eight weeks of help because we wanted 'child care.'

I was enraged. And I found it ironic in such a very unfunny way.  Because if we were wanting to abrogate our duty, we could have left him in school.  Where his help was so patchwork that we found out about weeks long projects days before they were due.  Sam was told over and over to 'hurry up and get to work on it' without anyone realizing that he didn't know how to begin, how to organize it, how to overcome when he got stuck. His solution to getting stuck is to stare at his paper.  Which is one of the problems he had starting cyber school. Another time we found out he had a concert 8 minutes before he was supposed to be at the school for that concert. Because no one had taken into consideration that he has theory of mind problems. And so did they, apparently, because everyone had assumed that, since they knew and he knew, we knew.  

But you know what they say about the word 'assume.'

If we were wanting relief from taking care of him we could have left him to fail upstairs. He's a really quiet kid, and rarely makes an appearance where his brothers are creating noise. As long as we keep him fed, he's happy. If we installed a dumbwaiter to raise his food to him, we wouldn't even have to look at him.

If we were wanting childcare, I could have skipped the meeting, stayed at work and made enough money to have someone work those lousy ten hours a week.

But we wanted someone who was trained to help him. Someone who could actually teach him the skills he needed to do it independently. Which is why we only asked for eight weeks.

Funnily enough, that same colleague of yours asked why, when we were denied those eighty hours, we came back and asked for 30 hours per week to work on clinical needs.

I didn't bother to come to that meeting, because I knew it would be denied on the initial request and wasn't going to waste my work time for it.  But I'll be at the next, have no fear. If I had been there, I would have opened up my mouth and told him it was for two reasons:
1. Sam has a lot of skills he needs to learn. Social skills, life skills, job skills. He needs to learn to cope with the noise his brothers make, because he can't go through life putting his fingers in his ears or shutting down the music, video, loud vocalizations of others. We had planned on working on that in the evenings and weekends with him. You know, when we could be relaxing but don't. But it is a thing that professionals could do. And that would free us up to be a family. 
2. I wasn't going to waste time for a lousy 80 hours. If I am going to have to hire a lawyer, take time off work to travel to you 90 minutes away and then take it off again for our Fair Trial. 

You are right that we could use childcare. We have no one to help us. I go to work and come home. When I take off from work, it is because of my children. My husband stays full time with our middle son. Who, if he was in school, would be one on one. Paul homeschools him because when he was in school they assumed that nonverbal meant not intelligent. They kept teaching him the same prelearner shit over and over. When we brought him home we realized he could read. Even though no one had actually taught him. So Paul wakes up and goes to work before he even has coffee. And stays at work all day. When I come home I spend 1-3 hours making sure Nathan is safe while he falls asleep. On the weekends I try to take all of the boys off Paul's hands at least one day so he can pursue his hobby of long distance bicycle riding. But he never goes to organized rides anymore. That involved at least one overnight and we can't risk having him away in case Nathan becomes aggressive. 

We have sacrificed so much for our kids that to be accused of being, essentially, lazy that it is ludicrous. 

I have attended so many seminars, read so many books, researched so much that even without my 'on the job training' I bet I have more actual autism-related training than you. 

We have spent over a hundred thousand dollars to help our kids. Nathan was barely born and Sam was not yet three when I went to my first seminar - Barry Prizant. Since then we have read up on ABA and started our own program at home, because nothing was available in West Virginia. Then I found out about Verbal Behavior, bought books, traveled 8 hours to a seminar, then 4 hours to another so we could set up a program in that. I researched PECS in the days before tablets. There was no speech therapist in our town, so I had to do it all. Since then we have gone to seminars and camps for sensory issues, medication issues, anxiety in autism, preparing for transition, preparing for adulthood, preparing for work, the best ways to teach visual learners and kinesthetic learners. I researched AACs and we traveled to Deleware to find out the best way to help our middle son communicate. I now take Sam to meetings where there are adult autistics so that he can be proud of his gifts and have role models like him. Yesterday he saw Temple Grandin and it seemed to make quite an impression on him.

Dr A, I am going to assume (that word again) that when you went to school to be a psychologist, you believed you were going to be able to help people. You had somewhat grandiose notions of how much people would benefit from your services. And then you got out in the real world and found out that it was more complicated. Not all people were willing to accept your recommendations to change their lives for the better. I don't know how you came to work for CCBH. I don't know what exactly it is that leads to these end of the year denials, the claims on the agencies that they are doing their paperwork wrong, that they are using the wrong words, that the way they've been doing their work all along is dead wrong and you want the MONEY BACK RIGHT NOW.  But I'm willing to bet that money for your boss, and perhaps for you, comes into it. 

And when money comes before people, that means you are serving the wrong group. You have failed as a provider. You are not the person you intended to become. 

If you are not helping the people you are supposed to serve, you are a failure.

Sincerely, the mom of the boys you are paid to serve. 

Friday, October 31, 2014

Holidays: Why Halloween sucks sometimes

All parents have an idea of the traditions they will pass on to their kids.  The excitement leading up to Christmas and opening presents.  The trick or treating and getting to as many houses as you can in your allotted time.  The chasing across a field to get as many eggs as you can, maybe get a special egg that wins a prize.  Watching fire works on the Fourth.  Going on picnics in the summer and sledding in the winter.  Bonfires and Haunted houses in the fall.  So many fun things we did as kids that we can't wait to share with our kids.

And then our kids are born.  And they don't even vaguely fit into the mold we imagined. 

They are overwhelmed by crowds and changes in routines.  They can't envision the future and aren't excitedly enjoying the holiday buildup. 

They hate any clothes but comfy ones.  Dress up pictures and costumes are out. 

They don't want to or can't say "Trick or Treat" and don't understand going from door to door and never going in. 

They have motor planning problems and we watch as much younger kids grab the eggs while they stand over them.

They have sound sensitivity and can't stand the boom of fireworks without melting down.  And it didn't matter anyway, because staying up later than their scheduled bedtime is completely forbidden. 

We know that going to company and family picnics is a waste of time since they won't eat the food,.  We'll spend our whole time trying to keep them from drowning in the lake or getting lost in the woods.  And they are sure to tell gramma or our boss how fat they are.

It seems that by the time our kids start to acquire the skills they need to participate, they are huge and considered too big.

Every holiday is another way of reminding us how far our kids are from their developmental norm.  We still get the twinge of regret that we have buried in our every day lives.  Perhaps because they only come once a year, we don't get immunity.

And so we develop new traditions, that still seem a bit hollow to the ideal movie running in our heads.

We now stay home for Christmas, because it was so stressful to stay in a hotel and chase Nathan all over the grandparents' house to keep him from escaping, breaking, poisoning, setting fire to, or creating a flood.  We don't put up Christmas lights because it freaked my husband out when Nathan bit the bulbs off.  We keep all presents put away so he doesn't open everyone's presents, including his own.  We have made our own, sewn ornaments to hang, because he kept breaking ornaments we loved.

But we still get a tree.  And we still keep special presents back for Christmas morning, after exchanging gifts the night before.  Everyone knows that Santa doesn't exist, but mom gets humored a little. We try to limit the number of presents to keep it from being over stimulating and spread them out a little.

We dye our own eggs, which the boys love.  Even though it IS a huge mess.  And we hide them in the yard.  Over and over.  So everyone gets  a chance to find eggs.  And they get baskets that are things THEY like and not too over the top. At 13 he still loves finding eggs, and his older brother doesn't mind hiding them.  Win-win.

And we still go trick or treating on Halloween.  It has improved.  Costumes now seem fun (although our 16 yo is so OVER THAT!)  Nathan uses his AAC to request and thank you.  And he thanks EVERYONE, unlike most kids.  He's gotten so much better at using it.

But he gets tired after an hour.  Even at 13, so much weirdness and social interaction is very wearing.  And he now has a behavior of spitting.  So I had to be reminded that COLORED candy is not allowed.  No exceptions for holidays.  Which kind of sucks.  Because that leaves him with only the chocolate.

And I was planning on stealing that shit.