Sunday, September 26, 2010

Wow-I'm flattered..and I like it...

  What a wonderful way to start my day..I received this blogger award from one of my favorite autism bloggers Big Daddy Autism. He received the award from another of my favorite bloggers Floortime lite mama.. In order to accept the award, I have to tell you seven things about myself that you don't already know-And I have to pass this on to seven bloggers that I think are great. The blogger part is easy..the seven things about myself..well once you've admitted that you keep a spare toilet in your's hard to go from there...but I'll try...

1) I love candy in all its various forms.  I consider it the base of my food pyramid. I don't however eat green candy. I have never liked it.  If I am eating a box of "Jujyfruits" or any other kind of gummy type thing-I always throw out the green ones-or try and pawn them off on Omar.  If I were stranded on a desert island, and the only thing to eat was green candy-I would die. 

2) Peter Falk (actor who played "Columbo") has seen me naked.  I worked as an artists model in N.Y. and he came into the studio I was posing in- looking for models to use.  He didn't hire me. My ego blames his glass eye.

3)  Although I have gotten better at it-ordering pizza, calling a plumber..or in general making any kind of phone call like that freaks me out.  I am not the only one in my family like this.  I once made my sister pay me to call a locksmith. 

4) Halloween is my favorite holiday. I love trick or treating. I think that this is one of the perks of having kids. 

5)  I love shoes..especially platforms. Most of my shoes have a three inch or more heel.

6)  Through blogging, I have met one of my best and dearest friends-Kim Wombles.(also one of my favorite bloggers)  In the year and a half that I have known her, we have worked together on many projects. The autism blogs directory is our latest.  We have shared so much with each other-about our lives, our accomplishments, of chocolate. Funny thing is-we have never met for reals, nor spoken on the phone.  She doesn't even know what I look like.  Yet my day would not be complete without the thirty zillion back and forth emails to each other. Go figure.

7) If you had asked me twenty years ago what I'd be doing now-being married and having four kids was definitely not on the agenda.  I regret nothing-but from time to time find myself amazed thinking about the person I was as opposed to the person I am becoming.

  So there you have it-my list of seven unknowns.  Now on to the fun part. I could name at least a hundred blogs that I love. Because of the way my life is, I don't get to read as much as I want to. I usually reserve a day to just go and read, catch up and comment. I appreciate so many-but I'm only allowed to tag seven of my they are in no particular order-

The king and eye


Looking for blue sky

Mother of Shrek

No Stereotypes here

Embracing chaos

On the spectrum

I look forward to reading seven things about them-and the discovering the blogs that they choose. :)

Thursday, September 23, 2010

waiting for the bus on a Friday morning...

"If you want to make god laugh, tell him your future plans" ~Woody Allen~

  We have a steady routine on school mornings.  I get up before the kids so that I can at least drink a half gallon or so of coffee  before waking them. Because,  once they are awake, I have to be on my toes.  I never know what the mood of any of them is going to be like-so I want to be alert-ready to fend off any hitch in our very well structured morning routine.  We also only have one bathroom. One bathroom for six people. We have been trying to put in another-but we seem to be thwarted at every turn. We just don't have very good  bathroom Karma. From potty training to flushing Thomas and his cheeky friends..we must have gone through at least eight toilets so far. Sadly, I am not exaggerating.  There have been many nights spent standing in ankle deep....water-hopping from foot to foot..hoping that we can get it to work with a hammer some craft glue and tape. Oh we have learned to be prepared-the hard way. We now keep a spare toilet in the garage.  It's right next to the power tools and lawn mower.    

  Every morning after they have eaten breakfast, they sit and watch television until the bus comes.  We have about fifteen minutes before PBS starts broadcasting children's shows. So I usually make them watch Yoga...until "Arthur" comes on.  This is probably one of the only children's shows that I can bear watching. Even though I do take issue with an aardvark having a dog as a pet. What is it with that?  Oh you don't want to get me started on children's programming..Has anyone ever watched "Clifford the Big Red Dog"? Does anyone notice that his family lives on a small island-an island!  Where does a gigantic dog, the size of a small building- poop? How does this family whose only source of income comes from selling things made of sea shells afford to feed a dog of that size? Not only that-they have a big house with more than one bathroom!  On the ocean!. sigh...It's sad when you start questioning cartoon characters..worse when you are envious..but I digress..As I was saying, our mornings are pretty calm. We have a rhythm a routine- it works.

  So there we were on Friday morning....We were running a few minutes late..Sammy was still in the bathroom...when Oscar started singing the cow song. Now this is totally my fault.  Oscar, being the computer whiz that he is, finds the most interesting (but not always appropriate) things to watch. He loves Youtube.   We try and monitor him with this..but sometimes..well..lets just say "Punching Barney" isn't what I want him viewing-no matter how much I might agree with the sentiment.  So, I try and find more appropriate things that we both will find amusing.  Because, if Oscar likes it-he will repeat it over and over.....and over.  That's why I showed him the cow video...sigh..What was I thinking?  

Me- "Alright..does everyone have their stuff?  Sammy hurry up..the bus is gonna be here in a few minutes"
Oscar-"I am cow..I am cow..."
Sammy-"I'll be done in a minute.."
Oscar-"Hear me moo...moo...moo..."
Oscar-"mama?...Cow..cow...Mama?  I need to go into the bathroom."
Me-"O.K....Sammy hurry up, Oscar needs to get in there.."
Oscar-" I eat grass..gas comes....Mama..I WANT to go in the bathroom said I can say things in the bathroom.."

 It's true..I did..Oscar sometimes has this great need to yell certain things out..we are trying to teach him that not everything is acceptable in public.. trying to give him a private place..a place to go when the URGE  overwhelms him...The bathroom is that place.  Only on Friday morning the one bathroom was occupied and Oscar really really wanted to express himself...and we really needed him to do this BEFORE school.

Oscar-" you want to hear how I sing the cow hahahahaha song?"
Me-" really need to get out of there now!.."
Sammy"But I'm not done yet!"
Oscar-"The gas comes out my AA...hahahahahaha..
Oscar-"That's not it...Mama?...The gas comes out my...heehee..Mama?...Can I say it..haha..Mama?"
Me-"You can't hold it?"
Oscar-"I'm trying!! ..haha...haha..The gas comes out..HAHAHAHAHAHAH!  "
Me-"Go ahead.."
Oscar-"I eat GRASS..hahaha and GAS comes out my..hahahaha...MY HINEY! HAHAHAHA!!"

  He tricked me! He had me thinking that he was going to say something else..that little weasel really had me going!  I thought "Wow-he's really getting it-getting that certain words should not be yelled at the top of ones lungs." For the next ten minutes or so he sang parts of the cow song...looking at me when it came to "that" part..laughing away..until he got to the line "Milk and cheese and butter made with liquid from my....Mama?...He's peeing milk."  "No is an is a get milk from GIRL cows..from their UDDERS."..."But looks like a PE.. hahahahaha...""Oscar it is an UDDER!"....""O.k. Mama..but it looks...""Oscar."..As the bus pulled up and the kids were going out the door..Oscar started singing.."Made with liquid from MY.." he gave me this big smile..a hug and kiss...and ran on to the bus...

  And so another week has come to a close.  Our first full week of school since it started.  I think we are all doing o.k.  And although I am still desperately hoping for a second bathroom-We seem to be doing just fine without it. 

Thursday, September 16, 2010

Getting off the wheel....

"Now the thing about having a baby - and I can't be the first person to have noticed this - is that thereafter you have it."    
~Jean Kerr~

You know, they told me it would be hard..that I would feel sad..lonely. That this big event would be difficult for me-bittersweet. Personally?  I think they just need to get out more.  Because,  I am....overjoyed! Thrilled..Giddy..absolutely out of my mind with happiness! Zoe started pre-school last week, and for the first time in twelve years..I AM ALONE!!!   Monday through Friday, for four beautiful hours a day-my time is my own! Did I mention that I was happy?  

  I really wasn't sure what to expect this year. Change...transitions..they are hard for all my kids.  Yet, so far this year has been almost too easy.  So many changes-and yet, they are doing really well! I have to admit, I was kind of worried....and the irrational part of me..the one who knocks on wood and is afraid of "jinxing" things, makes me almost afraid to write about it. But the kids have really been amazing.

  Sammy started middle school this year. Big change for him.There is a lot more expected...the work, changing classes..a locker.  Add puberty and all the fun with hormones..and I thought we were really going to struggle.  This past summer, he was a regular bundle of anxiety and worry. There really wasn't much anyone could do about it..I think the thought of it, the expectation...the unknowing-really had him going.  Now that school finally started and everything he stressed over has finally happened..he is a new boy. He is calm and relaxed. He has taken on all these new challenges with relish. I am in awe!  We were talking about school the other day.  He had had an assignment where he was to write a descriptive paragraph about a place he had been. With just a little prompting, he wrote a lovely piece. He told me that the ed. tech in his class room had made a big deal over it. Saying that she really could get a sense of the place he had written about because he had done such a good job.  He was so proud!  He said "Mama..It's a good thing I have an autistic brain." "Why do you say that?" ... "My brain lets me think and picture things different.  That's why my writing was so interesting." He then went on to tell me in intricate detail about certain television shows and their characters- their wants, needs, hopes, desires...what they like to eat, wear, read, sing..their political ambitions....sigh... Assuming that I knew exactly what he was talking about...

   The fact is, we have always been honest with the kids about autism. How could we not?  Especially as the boys are getting older .. they know they are different from their peers..and we couldn't ignore that. We have explained about the spectrum and how all people autistic or not see things differently. Autism is an explanation not an excuse.  It is certainly nothing to be ashamed of.  It's funny, in talking to Sammy about this, I have many times mentioned that he and Oscar are both on the spectrum-but in different places.  I said "Sammy, sometimes people look at Oscar, and all they see is his shaking and his noises and they assume he isn't very smart." He looked at me as if I had two heads...he said "That's just crazy talk! Don't they know Oscar is a comic genius!" I'll have to remind him of that the next time Oscar starts..ummm..hugging the mannequins at Old Navy. 

   So my kids seem to be doing well in these first few weeks.  I have to say, I am pleasantly surprised.  Usually we get into the flow of things just in time for the Christmas break. After which we spend a month or two adjusting all over again.  This year has certainly been different. As for me-well I get to step off of the hamster wheel that has become my life- for at least a few hours a day. It is a little too early for me to decide just what I'm going to do with this "extra " time.I'll tell you something though- I refuse to let it just be laundry-although I do have some catching up to do. (like two months worth) But,  if things keep going as smoothly as they have been..well the possibilities are endless.  But just in case...I'm gonna knock on wood.

Saturday, September 11, 2010

A letter to my former dentist...

"Avoiding danger is no safer in the long run than outright exposure.  The fearful are caught as often as the bold"~Helen Keller~


  Dear Family Dentistry,

  I am writing to thank you for the care you have given both Omar and myself. When we moved here five years ago, we were happy to find a dental group that advertised "care for the family".  As we do have four children, it was nice to find a practice we would all be able to go to.

  Your patience with both myself and Omar has been thoroughly appreciated.  As you know I have extreme dental anxiety, your understanding, kindness.... and well... Valium have helped significantly. And Omar? Well that gag reflex gets him every time doesn't it?  He still feels awful for the time he threw up all over your floor even though you assured him that these things happen.  Last week, my kids left feeling pretty good about their dental experience.(even though there were a few minor mishaps)  So you can imagine my dismay when you called to tell us that you would be unable to treat Oscar.

  Now I know that he didn't have the easiest visit. He does have sensory issues like his mom and a gag reflex like his dad. We blame ourselves for not thinking to tell him to close his eyes during the x ray. He was distracted by something he saw at the last minute and moved a little. I also understand that an extreme gag reflex is hard to work around, and that the mint sealant you tried to use made him throw up.  Thankfully it was only on himself and Omar.  Although I have to mention that your jumping back horrified and saying "I can't do this! I can't do this!" didn't really help the situation. Oscar felt pretty bad about that.  I own the fact that I didn't fully prepare him for this visit.  I assumed that  he was scheduled for just a check up. ( his last one went so well ) I didn't think to prepare him for any work being done. I take full responsibility for that. Had I thought to prepare him , it would have been a different experience.  I did try to explain to you that the next time it would be easier. But unfortunately, there won't be a next time, because you don't want to treat him.

  Had you called and simply said "we are afraid that with his gag reflex and sensitivity issues, we won't be able to do the work necessary-and that a pediatric dentist would be better able and more qualified to help"  I would have been more understanding. But you didn't. I again tried to explain that we hadn't properly prepared him, and asked that we give it another try. Instead you you went on to tell us that yours was a practice that didn't really deal with kids and that you didn't carry non flavored sealants.  You don't really deal with kids??? So then why the play area, the toys, the contests-Am I supposed to believe they are there for those wishing to let out their inner child?  What about  THE WEB PAGE that gives a full and detailed description on  how you treat children in your practice?  Or how about the fact that you call yourself "Family dentistry"?  No, what I think you really meant to say was that you don't treat kids like Oscar. Big difference. Non flavored sealants-my bodacious backside!

   You see, the thing about autism or really any other disability, is that sometimes this is all that people notice.  They don't bother looking at the person. Instead, they make assumptions. Kind of like you thinking Oscar can't behave any other way and me thinking I had prepared him enough..We were both wrong. The thing is, I can admit it.   Oh sure, I could send Oscar to a different dentist than his siblings-it certainly would be easier for us. But what would Oscar think?  That is important.  The really disappointing thing?  Is that with just a few minor accommodations, some simple explanations and a lot of preparation (on our part), we could have made this work. Oscar (as you implied) is not going to "out grow" his sensory issues. To tell you the truth, I was stunned when you suggested this.Stunned...  and then you went on to say that he would be welcome back at that time. Wow.  No, Oscar is an autistic kid-who is going to grow up to be an autistic adult. I wonder what people will say to him then. 

  Now, I can continue to kick myself for not having prepared him better( I really do hold myself mostly responsible)-or I can move on.  I choose the latter.  My family will no longer be needing your services as a dentist. Because we are a "family"... and to us "family" means that no one is excluded.

          UPDATE....This phone conversation did indeed happen.  I wasn't clear enough though in the beginning.  It was between Omar, myself and the dental assistant.  The dentist did indeed try and get in touch with me later, but I wasn't home to get the call.  Although I see no point in calling back...sigh...

Saturday, September 4, 2010

Seeing IS believing and therein lies the problem...sometimes.

Common sense and a sense of humor are the same thing, moving at different speeds. A sense of humor is just common sense, dancing.”~William James~

  I think that I have sat down to write at least fifteen times in the past two weeks.  I turn on my lap-top..log in to my site..and just sit there staring at the screen.  I have plenty of things I could write about-so many ideas. I just seem to be having a problem getting them out of my head. I think that a lot of it has to do with school starting this week. There have just been so many meetings and phone calls, doctor appointments and shopping trips. There have been freak outs and crying fits, arguments and tantrums. And my kids-they have been stressed out as well.

  Getting four kids ready for school takes monumental effort, nerves of steel and gallons of coffee. There are I.E.P.'s that need to be gone over, school supplies to be bought and the most dreaded thing of all-clothes shopping.  I HATE clothes shopping..dread it..loathe it..I would rather chew on tin foil than do it.  Everyone else with the exception of Oscar, loves it.  And therein lies the problem.  When Oscar finds himself in a situation that is stressful or boring, he finds interesting ways to entertain himself.  Sometimes it's stimming..and other times..well, he likes to yell things out..usually inappropriate things..because deep down, he KNOWS he's funny.  We do try to work with him on this stuff-we do. And my boy he really really works hard on this.  I know that I spoke a few weeks ago about this and at the time, I had thought we had  made some progress.  You know, I can't say that we didn't-because Oscar has been trying.  He waits now until we are in the car before yelling things out.  It has made our car rides quite interesting to say the least. 

Sammy"-Mama?  Are we almost home?"
Me-"We should be there in about twenty minutes.."
Lily-"Can we swim when we get home?"
Zoe-"I want to swim"
Me-Oscar do you want to go swimming?"
Oscar-"Yeah...can I have a snack first?"

  It's almost as if he has to get it all out of his system before he can concentrate on doing anything else. And that is absolutely fine. I can't have him yelling these things out in school or stores if he can help it. So if doing it in the car or at home helps him-so be it. People judge him enough as it is without adding anything else to the mix.  I think that is what bothers me the most. Oscar really struggles with pragmatic language..conversations ideas..thoughts, are hard for him to express. This in no way means he is incapable of them. Unfortunately, people see his stimming or grimacing and dismiss him. Or even worse, say things like "I'm afraid of him."  Yup, someone said that to me recently after Oscar loudly proclaimed he was frustrated and slammed his hands down on a table. He had been asked to do something that involved fine motor skills and he was having a problem with it.  I'm thrilled that he expressed is frustration..but not so thrilled with the "afraid" comment. That a knife through my heart.  I wanted to say "What the hell do you think he was going to do? He expressed himself! Do you not see what an achievement that is? He was upset and let you know it! "  Instead, I let it go and spoke about how amazing a kid he is-about how the world is so very hard for him..and yet he doesn't give up..and that I wished people saw THAT instead of judging him on his behavior. 

  I think that this is my biggest worry with Oscar. He is so very bright-but his stimming and struggle with expressive language sometimes cause people  not to expect too much from him. That is a big mistake and it does my boy a great disservice. He is quite capable-he just shows it differently. All anyone really has to do is look.

 I had all four of them with me as we went shopping for clothes at "Old Navy" last week. They all know that when we are out,  I expect the BEST behavior. I keep them on a tight rein in order to get what we need done in the fastest possible way. We get in, we get out and we go home.  That way, no one is too overwhelmed(especially me). So there I am at the register checking out when I hear Sammy saying (in a very loud whisper) "Oscar! Stop doing isn't polite!" I didn't  even turn around. I thought..I can't hear Oscar saying anything and Sammy..well, he's at that age where EVERYTHING embarrasses him. I chose to ignore it. Sammy wouldn't let me though. "mama?...MAMA!" I said "Sammy leave him alone..he isn't doing anything.."But...MAMA!"  SIGH! " Sammy..." I happened to glance at the cashier ..she had a very odd expression on her face..Crap.. I turned around and there is Oscar...his arms wrapped around one of the mannequins...rubbing his face  between her pointy plastic breasts.. all the while laughing and saying "She's my giiiiiirlfriend Sammy!  Her name is Suzy!" while patting her bottom with his hands. Unfortunately... sigh... I burst out did the cashier...the floor manager..and anyone else in the vicinity.(absolutely mortifying Sammy)  I said "Oscar, could you please STOP doing that?" He looked at me laughing and said "But she's my girlfriend! Her name is Suzy!"  "OSCAR! Please put Suzy down...she is too old for you.." "Ohhh...alright..." He gently put her down saying "Goodbye Suzy."   I grabbed our bags and out we went  .. In the car, after consoling my horrified Sammy...I told Oscar that he really couldn't do that in stores, that mannequins were for looking not touching.. Oscar said "I was just  making everyone happy..I'm funny."  "It wasn't funny to me" cried Sammy "He was saying she was his girlfriend!  Oscar! Mannequins can not be girlfriends!"  "Sammy...bud...Oscar knows one in the store thought he really believed that..he was just making a joke.." "Well I didn't think it was funny!" "Well it isn't always about what you think Sammy!"  sigh...I really don't like shopping...

  School started Thursday for my three oldest.  Zoe starts her program on Tuesday. For the first time in twelve years, I will actually have a few hours every day to call my own.  I don't think that I need to mention how very exciting this is for me. I worry though...this is a hard year for some of them.  Sammy has started middle school (so far so good) and Oscar fourth grade.  There is a lot expected of both of them-especially Oscar. My worry is that he will be dismissed..that his outward behavior, the way he communicates..the way he moves..his sense of humor...sigh...I worry that this is all that people will see. That they won't challenge him..that when he becomes frustrated..they won't try to work around it..opting instead to lower their expectations. He is a great kid-and much smarter than people think. All anyone has to do is take the time and look. And if you won't take my word for it.. Just ask "Suzy"...