Wednesday, December 22, 2010

The Autism Night Before Christmas

I am not sure if my friend Beth wrote this or not.  I received it in the mail today from her.  I like it. So I thought I would share...

Twas the Night Before Christmas, and all through the house, the creatures were stirring, yes even the mouse.
We tried melatonin, and gave a hot bath, but the holiday jitters, they always distract.
The children were finally, all nestled in bed, when nighmares of terror, ran thouh my OWN head.
Did we get the right gift, the right color, and style, woudl there be a tantrum,
Or even, maybe a smile? Our relatives come, but they dont't understand
The plasure he gets from flapping his hands.  "He needs dicipline,"  They say, "just a well needed smack,
You must learn to parent...", and on goes the attaack, we smile and nod, because we know deep inside
The argument is moot, let them all take a side, we know what it's like, to live with the spectrum,
The struggles and triumps, achievements, regressions...but what they don't know, and what they don't see
Is the joy that wee feel, over simplicity, he said "hello", he ate something green!
He otld his first lie! He did not cause a scene!  He peed on the potty who cares if he's ten,
He stopped saying the same thing, again and again!  Others don't realize, just how we can cope
How we bravely hang on, at the end of our rope, but what hey don't see, is the joy we can't hide
When our chidlren with autism, make the tiniest stride, we make look at others, without the problems we face
With jealousy, hatred, or even distaste, but what they don't know, nor sometimes do we
Is that children with autism, bring simplicity.  We dont' get excited over expensive things
We jum for joy, with the progress work brings, chirldren with autism, try so hard every day
That they make us proud, more than words can say.  They work even harder, then you or I
To achieve something small, to reach a start in the sky, so to those who don't get it, or can't get a clue
Take a walk in our shoes, and we'll asure you, that even 10 mintues, in to the walk
You'll look at us, with respect, even shock.  You will realized, what as we go through
As the next time you judge, I can assure you, that you won't say a thing, you'll be quiet and learn,
Like the years that we did, when the tables were turned....

We Love a Child with Autism!

Tuesday, November 23, 2010

Small Victories

Let me also shout from the roof tops as my son has learned just this week how to "thumbs up" and how to answer the question, "how are you doing?" appropriately. He is also on the verge of reading. Which I think all of these things epitomizes autism. You can be a genius who can do complex math and read at much higher reading level and yet not understand the questions being asked of you. I will say it again, autism can be cool. as well as bewildering.


Anyway, I am proud of my son. These are things "we" have all been working on. We as in the school, me and the therapists and of course my son. Small victories people. Small victories win wars. God, I love my son. I am so proud of you!  Love and kisses to him!

Mondays, Questions and Answers and Other Small Victories

So today is Monday.  Well it was, or is, depending on where you are.  Mondays are not fun at my house.  There is a lot to get done in a small amount of time.  I have two essentials that bookend my day.  Bible study in the morning and therapy at night for my son.  In between is anything and everything. (bible study ended today...more time in my future? God I hope so!)

Today included laundry and dishes as always, ABA home therapy these are pretty standard fare at my house on a Monday as well.

For some reason it was really nice out, I was going to clean the carpets.  They are making me want to climb the walls.  I didn't get to them.
Why? you may ask...

  I spent a good two hours explaining to my mother in law the ins and outs of autism.  Why I think my husband has it, why I don't want to share a three bedroom town home for a week with my brother in law, my sister in laws mother (never met) and my mother in law.  There are 3 kids between us.  It kid of goes like this one is an ex military time with some lingering PTSD, one is pregnant, two have autism, and everyone is is just plain crazy.  Sounds like it could be a Brady Bunch expisode...The Brady's are too close for comfort or the Brady's Very Merry neck strangling vacation. 

If I am going on vacation and let me make this explicitly clear, I have never been on a REAL vacation with my husband.  Don't believe me?  My honeymoon was self financed over Thanksgiving 11 months after our wedding to South Carolina for 3 days, we were so sad we at our Thanksgiving meal at a Shoneys!  SO, if I am going to go on a vacation it will not be to go to BRANSON, to be shoved in one room with four people to be herded around all these attractions while trying to keep my husband and son from having meltdowns!  Uh, I want to go to the beach and watch my children play in the ocean.  Not have someone get pissed because my son paces in front of the TV, while I have to hold my husband back from hitting his brother over what ever comes out of the brother's mouth about the pacing kid.  See my delima? 

I also had to explain, and I am not sure it got through, was that not everyone has autism in my husband's family.  I think I repeatedly said, "Unlce Eugene does not have autism because he shakes his leg."  This week I have had two different women in the family tell me two different people in the family have autism. Neither of the suspected people do.  Thanks for playing.  I am giggling a little because everyone wants to have the label in the family.  Or they want to pin the lable on someone else.  OHHHHH now that makes sense why he is so odd.  No its not autism, he is just gay...( How do you confuse that?)

I think that was the single most disturbing thing of the whole conversation.  The person I think who has autism is my husband and that isn't ok. No one agrees with me on that.  Yet, its ok ,my son does.  Also the others that autism "got pinned on" earlier in the week, they are the scape goats of the family.  So it was ok they had it...So I said, "No it is not ok..."  I am proud of myself for speaking up.  The apples in our house do not fall far fro the trees.  That is ok here. 

Did I mention autism is cool?

 It is here, I don't care what you say.

Saturday, November 20, 2010

John Lennon - "Beautiful Boy"



This is one of my favorite songs.  I love John Lennon. 

I first heard this song while watching the movie Mr. Holland's Opus.  I was young and without children at the time.  I thougth the movie was well, dumb.  I lived in a world of what I thought was perfection and nothing like "that" was going to happen to me I thought.  I certainly didn't want to identify with someone who was going through something like that!  (oh to be young and dumb)

I would like to go back and watch Mr. Holland's Opus and see what I think of it now.  I don't remember so much about the fustrated teacher and the students.  I remember the father having a hard time relating to his deaf son.  I remember not liking that particular part of the movie.  I do remember the song, Beautiful Boy.  I even remember the signs he used while singing the refrain.  I attribute that also to learning a little sign language in my day.

I think of my son when I think of Beautiful Boy.  Not because he is beautiful, which I feel he is, but for other reasons.  I would like to share the reasons with you.

I think of John Lennon writing this beautiful song to his son.  I think of his time being cut short with his son.  I hear a father expressing his deep love to his child.  I think of my son.  I think of autism and I think of my son's everyday stuggle with autism.

Close your eyes


Have no fear

The monster's gone

He's on the run and your daddy's here

My son is afraid of the shaddows on his wall.  Going to sleep can be hard for him and sometimes my husband stays with him and they talk and play.  I think of my son getting older and getting past the mosters.

Before you go to sleep


Say a little prayer

Every day in every way

It's getting better and better

We say prayers as a family at night before we go to bed.  Then I think about our lives together and how things are getting better and better.  I think of autism and how our family is coming to terms with autism and how it fits into our lives and how it is getting better and better everyday.  I think of how my son is getting older and how he is improving and learning so much.  It is getting better and better in every way.

'Cause it's a long way to go


A hard row to hoe

Yes it's a long way to go

But in the meantime


These lyrics remind me of how we have a long way to go in finding a cure for autism.  I think of my son's struggle with autism and how he has a long way to go. I think of society and how they have a long way to go, especially when it comes to understanding autism.  I think of my son growing up, having a long way to go.  After all he is only 5.

A hard row to hoe- Again, I think of autism and all those before us that had a rough time being understood.  The mothers trying to get help.  The mothers that are still trying to get help and trying to get people to listen and/or understand .  I think of my son and how he will have a hard roe to hoe, how our family does, often feeling misundestood.  I think of those that came before us and how I am going to keep that trail they blazed for me on fire.  But in the meantime...
Before you cross the street


Take my hand

Life is what happens to you

While you're busy making other plans

These lyrics make me think of a father dispensing wisdom that is so true.  I think of my son who is still young and needs that guidance of having his hand held while crossing the street.  Yet, it means so much more than simply holding a hand.  I love the phrase Life is what happens to you while you make other plans. It is true.  It makes me think of autism and getting the diagnosis.  It makes me think of therapies that we go with out because we can't afford them.  It makes me think that I need to stop and remember how precious this journey is and take my son's hand.

Beautiful, beautiful, beautiful


Beautiful boy

Beautiful, beautiful, beautiful

Beautiful boy

These lyrics make me think of my son as the figher he is.  I think of signing the refrain and singing this song to my son, more often.  A lot more often.

Thank you John Lennon for sharing this intimate song.  I understand now.

Thursday, November 18, 2010

What Not to Say to The Parents of an Autistic Child



This is meant to be hilarious, make you smile and to inform.  I probably don't have enough facts in here, but I hope you read this and you can think a littlee about what you say before you say it.  The best thing is to just be honest and ask if you are curious.  I love to advocate for my child.  I love to inform people about autism.  I just hate it when people try and tell me how to do my job with out walking in my shoes. 

They’re gonna grow out of it right?

I hear this one A LOT lately. This has to be the single most hurtful and annoying thing to say to a parent of an autistic child. The smart ass answer is, "Totally, because where did all the autistic adults go? You never hear about them!" Sigh. This is one of those what rock do you live under? I also like to say, "Have you met my husband?  He hasn't out grown it." 

NO Jokes aside... Autistic kids do NOT grow out of it. It kills parents when you say that. It diminishes what early intervention is all about.  Why would I be spending myself into bankruptcy, with speech therapists, occupational therapists, physical therapists, behavior therapists and the like.  Buying books and learning the therapies...I am busting my ass to improve my son's quality of life, and it doesn't matter.  So you are saying I work endlessly with my son for no reason because he will grow out of it? Geeze, why am I working so hard?  In the next decade there will be more and more autistic children turning into adults and there will be an epidemic on our hands because they are not going to grow out of it.  The reality is that it is not at the forefront and so everyone thinks it doesn't exist.



He is fine. I don’t believe he has autism.

 I will refer you to Aaron Likens for this answer and the "grow out of it" phrase as well. He is a Community Specialist for TouchPoint Autism Services and he has autism and he addresses both of these questions well.  
My dad says this one on a regular basis, and the previous one as well. I always like to say, come live with me for 24 hours and then we will see what you say. Come sit on my couch one afternoon and watch my son pace for an hour and then lets revisit this conversation

To be a little hilarious here...if you say that to me, I like this one, sometimes.  I like the more, "I would have never known he has autism."  Awesome.  Until, the world knows more about autism, I am trying to get my husband to fit into the world, not the world to conform around him.  I do live in reality.  Unfortunately.


I think my (dad, uncle, brother, whom ever) has autism because he does (insert annoying behavior)

Really? This one goes both ways. I like it when people “get it” and they list all the right symptoms and its appropriate. Then there are those others. My ___ has autism he used to build really detailed “power lines” out of yarn and clothespins. I think he had autism. Really? That is when I bring out the what is the intensity, Duration, and Frequency of the behavior.  That is a way to begin to determine if it is autism or not.


Why does he do that? I  explain it and get... Bullshit that isn’t why.

Uh, I have to come clean, this one is most uttered by family.  It is very annoying.
The honest answer.  Uh…really who knows. He could be anxious, bored, annoyed. He could be stemming. 

The second half of this one came from my mother in law. This was the response to my husband after he explained that why he and his son prefer sameness is to ward off anxiety. Also she also screamed in a Cold stone Creamery, “You can do Calculus in your head and you can’t pick ice cream from a board! That is bullshit!” When my husband couldn’t get the kids to leave him alone while he looked at the board and didn’t want to hold up the people behind him so he gave up. I told her that statement pretty much summed up autism. She again said, "bullshit." Some people don't care and are just annoyed by the behavior...Move on people nothing to see her.  You are annoying me with your ignorance and profanity...  All I can say is well then, you tell me if you don’t believe my answer.


You should spank more then he wouldn’t do that.

I love this one. This one really makes me want to hurt the casual observer in public. Again, come with me for 24 hours and you can walk in my shoes.  Some kids actually like the physical pressure spanking gives them.  YES, do not refer to the above, "Bullshit!" I really should have made this into a bullshit flow chart now that I write this...LOL nerd joke.
 Lets go with the regular answer also I would give if you were talking about my daughter.  Spanking doesn't teach her anything but to hit others.  Is it necessary sometimes?  Yes it can, it needs to shock not hurt or bruise. 



I have heard of autism but I don't know what it is.  What is that?

Again, this could go both ways, it usually depends on my mood, the kids behavior in the store, and if the person asking is sincere or not.  Usuallyy I get the attitude of "and I don't want to know or hear you lecture me" that goes with that statement above.  So it makes the annoying list.  Well then if you don't have anything nice to say...you know the rest.


Staring open mouthed.

Really? Seriously? Cut us some slack. It is hard enough to endure going to the store sometimes when you know it really bothers your kid. When you know his clothes are scratching him and so he can't hear as well, the lights are really bright and  that is distracting him.  The amount of people in the store is giving him anxiety and he just wants to "hooo" as we call it and flap or pace.  It makes him feel better so what.  Your bad behavior really just taunts  me to throw a tantrum or yell a profanity at you so move along.


How do you do it? You must have a lot of patience.

 I don’t have that kind of patience. Really? I don’t have any more than you. I have had time to adjust. You can’t wrap your brain around it. Neither could I. Also its your kid, and you don't have a choice, you adapt because you love them more than oxygen.  What would you do then abuse your kid? Ignore them? Leave them on the side of the road? I would hope not.


I feel sorry for you. This can be pity or said.

NO. I feel sorry for you. That is not sarcasm. I do. Your kids are all “what did I get for Christmas? WHAT? NO X BOX? (pouting)  Your kid also takes everything for granted.  Not mine. My kid, is thrilled at Christmas like it was his first.  His excitement is genuine, even over the littlest stuff.  My kid is asking questions and telling me what he loves. He doesn’t take anything for granted.  He works very hard for everything he learns and he loves to learn.  Autism is so cool, when you accept it and love it. Like anything it has ups and downs, but my kid is so genuine, real and pure, I would not trade it for sulky or for what is considered normal.



Will you always have to talk to him like that? Like a dog?

My girlfriend said this to me after about a week of ABA training. My mouth dropped open because we had seen so much progress and had learned so much that week. It was such an insult. What we had said was, “Great job looking at me.”  every time he looked at us.  (I guess it got annoying.)  Hell it was great he was looking at me, he had never looked at us so much. Plus, if your kid did it all the time you would take it for granted too. Needless to say, she is divorced and treats her kids badly and we are not friends anymore. 



You must have a lot of compassion

Again, see above with patience. What would you do? Yell at your kid, smack’em? What? Ignore that the autism is there?  Hope he grows out of it?  Put your head in the ground?  I guess enough parents do it.  I am his mother and I will fight for him!  I love him. You never know until it is handed to you, I guess. So yeah I am a mom, I thought that came with the job description?


Do you ever wonder what he would be like if he was normal?

Thank God no one has ever said this to me.  I  may do some irrational stuff to them if in a bad mood. 
In all blunt honesty.  I used to, I used to cry about it. I used to wonder.

I then looked to his father. I noticed how successful his father is, how great and pure his dad is and I learned about his dad’s quirks. Hell, I had been married to the man for 11 years before I realized he had quirks. So I think my son will be “just like his dad” and I am wonderful with that. I fell in love with his father and I loved my son from the beginning, so I consider them both to be "just fine."   In fact, I would rather be around them than most “normal” people. “Normal” doesn’t exist. .

Do I wish they had an easier time in life? Yes, but I also wish you and the rest of the world understood them better and how they function. But that is OK, you are missing out.


Oh so what special power does he have?

Well, he isn’t a superhero. Also, he is just 5 so I don’t know yet, he hasn’t revealed them to me.  His dad can do large math problems in his head, it is handy, more often than not. He also can remember a ton of historic facts, he knows a ton of useless trivia, (once he has a trivial pursuit game launched at his head-by a sore loser.) he can remember movie lines word for word. He and my son have an amazing memory.

Also not every autistic person has a “power” Yet every one of them is unique and special and if you talk to them and get to know them, I am sure you will find out they are super and awesome in their own right and that is their superpower.

This is my take on it.  This was my therapy to put this out there.  I have been in the line of fire with a lot of these questions lately and you may not feel the same way I feel.  That is ok.  Hopefully someone reads this and they go, "oh I didn't know."  and they change how they approach it. 

Tell me what do you not want said to you as the parent of a child with a disability, autisitc or not.

Monday, November 15, 2010

The part of the autism puzzle that is bewildering to me...family part 1

I was watching Parenthood the other night... And when Max's dad hauled off and hit that jerk in the grocery store, I screamed, "HELL YEAH!"  I could not help it.  I was seething with anger.  The incidents on that show are so true to life for me.  I want to call up family, put it on facebook (which I do regularly) and tell the world..."This is exactly how I feel! Feel it with me, do you understand how visceral this is?" The show captures the essence of what is like to parent a child with an autism spectrum disorder, and it captures it painfully.  I usually end up crying sometime before 10 p.m. central time.  I can SO relate to that feeling of wanting to hit someone because of what they say or how they treat my child... Unfortunately, and bewilderingly so, its usually is not the nasty woman in the grocery store, its usually a family member that says the offending comment.

Yeah, I said it.  My family.  I told someone the other day, I have failed my family in some way.  I am an advocate for my child, a very passionate one.  Yet, my family is pretty clueless, when it comes to autism.  I think we just figured they would figure it out, like we did. We assumed they would find a book on it and read up.  We assumed they would call us up and ask us what is this autism about? Yeah, we know what happens when you assume...Thanks. My husband and I did not figure that our family wouldn't, or wouldn't know what to say or do... What has been our response you may ask?

We have retreated.  We are hurt.  We have pulled away.

I know we can't be the only parents of autistic children who feel this way.  Hell, I know, and other parents of autistic children will tell you...it can be a very isolating disorder, not just for the child, but for all involved.  We feel misunderstood, we are shamed into feeling like bad parents.  We are even told, if we would spank the kid every once in a while he wouldn't do that!  (Really? Let us not go there.) 
Just this weekend I had a conversation that went like this.

 "I was speaking to your grandparents about Uncle So-in-So."  My mother in law was telling my husband.  "They were talking about how your uncle used to build these "telephone towers" (string and clothespins) and they kept talking about how good he was at it!"  My mother in law continues.  My husband and I are wondering where is this going?
"I asked them if they ever thought he was autistic.  They looked at me really funny."  Ok.  There are several issues I have with that statement, but I will get there.  I will keep going with the conversation for now. 
I was quiet up till now, I had sprung awake at her words.  I said, "What do you mean by was?" My anger building "Do you think he still has autism?"  (meaning uncle so-in-so)
"No." my mother in law replies as if I had just insulted her.
Here it gets fuzzy.  I even called my husband to verify accuracy. I think the anger and the complete bewilderment I was having blocked out the worst of it... I am going to recount it like I remember it.
"So are you saying he had it and now doesn't?" I am trying to nail the jello to the wall at this point.
"Are you saying HE GREW OUT OF IT?"  :(not the first time I have heard this statement from this side of the family) I say my voice growing more and more angry and louder with each word that escapes my lips.
Her reply is, "I don't know!"  Seriously? WRONG ANSWER!!!  (I am trying not to channel Max's dad in the grocery store...)
I looked away and then straight at her, and  it was painful to look her in the eye-at that moment.  I did not want to look at her,.  I was so angry. 
I stated in a  very pissy tone, "You don't GROW out of autism." I think I even stated, "You always have it, some people just learn how to blend into the world better than others."  I can't even remember!
Her response, "Oh, you don't? Well, I don't know."  We quickly changed the subject. 

I have a dear friend who we never get to sit face to face and talk, it is always over email , facebook or on the phone.  We are very busy special needs parents.   She has a son with a disability and I just had to ask how she broached the subject.  Again, maybe she didn't have any incidents, maybe she sat them down and said, "Hey, here is how it goes..." or like I joked with her, maybe your family is nicer than mine.  She gave me good stories of course!  She, like me, always has wacky stuff go on in her life.  She gave me good advice and I will be honest with you, we are still discussing it via email. 

I would love to know how other people handle this.  I know I am not the only person who is dreading the holidays and how family is going to handle my kid.  I want to know what I should say that isn't too snarky when someone looks at my son as he is pacing in the house.  I know there will be comments.   I want to know what someone says when they give me the pity face, when I tell them autism is a life long affliction.  I usually say that autism is pretty cool.  I am not sure grandma is going to get what I mean...  I want to know what to say when someone says, "Oh that is bullshit.  He doesn't do that."  or  "Oh, he is just controlling you.  You need to whip his ass once in a while.  I wouldn't put up with that."   

Oh, yes people, it happens.  I recently had a family member ask me about Temple Grandin.  At first it seemed to be going well, there was a dialog.  We discussed her lack of speech till the age of 5, and that is where the wheels came off.  The family member said, "What?  Did Temple's mother not like her?"  My husband and I stopped.  We even asked..."Why would you think that?"  The response was just a shrug.  We quickly ended the conversation after that, it was going no where. 

I know, what you are thinking, .Do what do you do when you are in public."  Well, we haven't had too many incidents in public.  My son is a very curious kid and doesn't really throw too many fits.  The worst of it is the the pacing and the "hooing" as we call it, when he gets excited.  The other nuances of autism are easily disguised.  Oh ,and when incidents do happen, my son is 5.  So tantrums are still a socially accepted behavior, when it happens in Walmart.  Or we just ignore the people and deal with the behavior (our sons).

I think we just want our family to want to understand and accept our son.  Isn't that what everyone wants?

Tell me if you have some good suggestions.  I would love to hear them.  Personally, I am not sure I want to associate with such ignore and on the other hand, I am not sure I can let it continue.

Saturday, November 6, 2010

PBS interested in talking with families that have a child with autism approaching adulthood

A friend of mine works for NAMI and she passed this information on to me. If anyone is reading this blog, I thought it would be nice to pass along.  My son is still very young.  This is great that PBS is doing this.  I love to see Autism out there in the news.  We need to keep it out there and have people realize it affects more children than childhood cancer, juvenille diabetes and pediatric aids combine.

 

A PBS television program is interested in talking with a family in which a child living with autism is approaching adulthood--or already is an adult--and the family is trying to find an appropriate home or care for the future. If you or anyone you know has a story to share, please send a summary (approximately 400 words) to Bob Carolla from NAMI’s media relations team at bobc@nami.org. Please include telephone contact information, your city and your state.

NAMI cannot guarantee that a story will be used, but each one submitted will be reviewed. Some people may then be contacted for additional information. This PBS story will focus only on autism, but if you wish to share a story about a similar transitional challenge involving a different diagnosis, NAMI will keep it on file for possible future use.