Monday, August 29, 2011

ACK! The Dentist!!

At least we don't have THIS dentist!
Few things evoke such powerful fear in me like the dentist. I don't really know why-  I can't recall a particular horrifying dental appointment for myself- unless they were all horrible and I have done my best to block each and every one of them!

Then I became a mother and my fears were multiplied by like a million by those of my kids.  The oldest had AWFUL teeth- and his first real dental appointment had him strapped down and screaming the whole time as they attempted to get an abscessed tooth out of his head. If that doesn't scar you for life- I really don't know what will.  Every  single dentist appointment after that- including 18 months in braces- was sheer torture, for him and for me. Now that he is 20 - he has bad teeth again and is begging to get in to see a dentist. Is it totally wrong of me to say "Na nana na na na- I told ya so?"

The boy has been my most challenging-Autism and dentistry- mutually exclusive terms to be sure. So I started with him by reading books, social stories and taking him when Teenzilla went to the dentist. So I killed 2 birds with one stone- I got the social story done- and made his first visits exploratory in nature. Then I had to seek out a pediatric dentist- preferably one who had experience working with special needs kids.  When I found her- I was beyond relieved.

So today's excursion to the dentist office was one for *GULP* extractions. My boy had developed a very snaggle tooth smile- with 3 baby teeth not coming out and the permanent teeth coming in right on top of them. This was a problem in many ways- one being his inability to wear his mouth guard at football...

Goofy Juice
Now the boy has to be sedated for dental work of almost any kind. He has the most sensitive gag reflex and sitting in the big chair with the lights etc etc well- let's just say as a non autistic adult- that gives me the creeps. So he takes what I lovingly call "goofy juice"- and not willingly either. It is called Atarax- which calms him and reduces his anxiety enough they can get the mask on him for the happy gas. Which was ANOTHER near disaster when i told him about it- he said "NO NO NO! I don't want any of that!"  So the "goofy juice" works it's magic- turning him into a slack jawed, glassy eyed  stoned version of himself- and then he is ready for "The Chair".

Did I mention the dentist doesn't allow parents to go back with the kids....ONLY if it is absolutely necessary- and we have yet to have an absolutely necessary instance. So- I sit in the waiting room, nervous and worried awaiting the hygienist to come and get me, or to bring the boy out in a meltdown. Luckily- this doesn't happen. From start to finish the tooth extractions took a half hour. 30 MINUTES PEOPLE!!! Now of course these are baby teeth and have little root and were already loose but that even impressed me. He walked out a little unsteady on his feet, but all in all no worse for wear!

Poor kiddo
I got the after care instructions and we left. I told him he could not drink through a straw today and through a mouthful of gauze he asked "Why?"  I explained it would make his gums bleed...he shuddered but seemed happy with that answer. About halfway home  he asked in that slurry, numb after the dentist way  for McDonalds. Yup- he is gonna be just fine.

Saturday, August 27, 2011

And this is why I cry in the car sometimes...Damn


This was at football practice...Friday I believe. Look at the 3 boys in green...ALL looking at my boy- while he stands apart from the pack. *Sigh*  

He IS trying- his coaches are awesome, he goes to long ass practices wearing all of that equipment without a struggle or even a whimper. I am so proud of him- no matter what - he is my MVP and always will be. 

It's pictures like this that drag me back to reality- a reality with Autism- and no matter how much progress he makes- he will always be "different". I celebrate his uniqueness every day- but that is not to say that somewhere deep down ( and sometimes not so deep down) I just wish so bad that he was "normal"

Whatever the fuck normal is anyway...

He has now completed 2 weeks of practice- this is the "make it or quit" stage- and he made it. His scrimmage is next week and the first game is on  September 10th. I know he is third string and won't get much play time (well  he gets a guaranteed 4  plays per half, them's the rules)but I hope that the first game gets him deep down where that passion is- that same passion for dinosaurs he has. He would be absolutely unstoppable at that point!

I posted this quote on my Facebook page, Red Vines and Red Wine the other day:

Never disourage anyone who makes progress, no matter how slow. You cannot do good unless you feel good. When you are serene, relaxed and enthusiastic, you are also more productive, creative and dynamic.  This is something that has been proven time and time again yet we consistently get caught up in the apparent immediacy of our routine and fail to see the forest for the trees. 

Pretty damn profound don't ya think?  Our coaching staff is patient,( oh so patient!) and works hard at making ALL the players feel good.  Today he had a GREAT day...and even though he dropped the watermelon in the watermelon drill- he worked his ass off- got high praise from the coach and led the boys in the end of  practice cheer.  So- no crying  in the car today....let's see what next week brings.

The melon was cracked and slippery- he still got it across the field- and coach was videoing it too!

Wednesday, August 24, 2011

Going back to school with Autism. A letter to my teacher

He is so awesome
In 11 days my son will begin school as a fully mainstreamed 4th grader at his new school. I am excited, nervous, worried and hopeful. He is playing football now, he is getting better at socializing - we really just need to work on the whole dinosaur thing- helping him to learn when people don't want to hear about dinosaurs anymore. But he has come so far in the last 4 years- and this is what we have been working for.

I came across this article and this letter, and I modified it a bit for the boy. Please feel free to take and use what you need - it is what it is there for.

Check out NLC Concepts for other great autism resources.


Hi, my name is _________________________________and I am in your class this year.  I want you to know a little about me.  I’m nervous to be in your class because it’s new and I don’t know what to expect.  I need some time to adjust and then I will feel comfortable.  Please don’t judge me on my first few weeks.  As the time goes by, you will be amazed by the skills you never thought I possessed.  I sometimes look like I don’t understand.  That’s just because I don’t have the same expressions and reactions as other people.  I might not look at you when you talk but that doesn’t mean I didn’t hear you.  I did. In fact I  usually hear more than most people.  As I become familiar with your classroom I will begin to shine.  A great way to speed up this process is letting me know what to expect.  A written  schedule will help me through the day and reduce my anxiety.  A five minute warning before a change of activity can help me greatly too.   You are my teacher and I look up to you.  I want to succeed this year but I can’t do it without your help and most importantly, your belief in me that I can do it!

1. What is my general disposition?
2. What am I really, really good at?
3. What do I absolutely LOVE doing?
4. What do I absolutely HATE doing?
5. What academics are my strong areas?
6. What academics do I need a lot of extra help with?
7. Which skills would my parents really like me to work on this year?  8. How do you know when I’m getting frustrated?
9. What can you do to calm me down before I melt down??
10. Too late!  Meltdown!  What can you do to calm me down?
11.What strategies work really well to get me to do something I don’t want to do?
12.What typically makes me laugh?
13.What consequences back-fire and don’t give the desired results?
14. I don’t like consequences, but which consequences work well for me?
15. I would also like you to know…


Think back to when you were 6, 8 or 10 years old. Do you remember your teacher? Do you remember 
how you looked up to her?  Her words were golden. Do you remember when you forgot to do your 
homework or weren’t paying attention? Her stern words cut you to the core. Not because she was mean 
but because you desperately wanted her approval.

School ended and those days were long forgotten. Then my child was diagnosed with autism.
Why didn’t anyone warn me I’d become that 8 year old again?I desperately need teacher approval, not for me, but for my child.This is a common sentiment of parents to children with autism. So if you’re a teacher, Autism consultant, SLP, ABA therapist, OT, PT, Psychologist, Social worker, Camp Counselor or anyone 
else that’s an authority figure to a child with autism –THIS IS FOR YOU!

My child has autism. I know that. I’m not in denial. How could I be? I live it every day. I have other 
children. My friends have children. I know the difference. They answer questions, my child might not.They play together, my child might not. They share their thoughts, my child might not.My child is different. He is on his own mission. I’m happy to be by his side. I am thrilled when he learns  something new, no matter how small. I am proud when he accomplishes something I once never thought possible. I take delight in his idiosyncrasies. Please rejoice with me. Please notice his worth.

My child is multifaceted. He has weaknesses and strengths. He has deficits and skills. People are always 
pointing out the deficits. Please join me in noticing his skills.

Teachers. In our meetings, please allow for some time to recognize my child’s good points. When you do, 
I go home walking on air. When you don’t, I drive home in tears.
SLP’s, OT’s and PT’s. When your opening statement is a positive remark about my child, I begin to relax.
When you only voice concerns, my stomach twists into knots.
Consultants, Psychologists and Social Workers. When you begin with positive observations, my heart 
soars in delight. When you only stress your concerns, my heart splits in two. 

My child faces judgment at every turn. I need you to be different.  Stand strong with us! Unique is 
good! Let’s tell the world! Help me instill pride in my son. Show him his greatness. Try and see his
perspective. Praise him as much as you can. By doing so, you improve my child’s life and build his 
confidence. You will motivate and inspire him. He will exceed your expectations and I will be eternally 
grateful to you.

Monday, August 22, 2011

Football and Autism- can they mix?

After watching the boy practice this last Saturday I totally get why the Mister says it is painful. He seems to be trying so hard- for awhile anyway. Then he hangs back and hides so as not to get picked for certain drills. Drills where they are hitting. He is not a hitter. That would be a good thing under normal circumstances- but when playing football it is kind of a requirement.

He likes to run- he likes the physical exertion of it all- until it's time to hit. Personally I think he should be quarterback- everyone protects the quarterback and they don't have to tackle a whole bunch. But unfortunately he isn't much on throwing the ball, and he is just learning how to read plays... maybe a running back? If he stops running like a girl that is- and then all I can hear in my head is "Run Noah! Run!"  In my best Forrest Gump voice.

Right now-  I truly have to say I am so proud of his effort. We have just begun week 2 and he has yet to complain, has not whined once about getting ready to go- and believe me- getting him ready is an ORDEAL...cup, girdle (full of pads), pants, rib protector, shoulder pads and helmet- it is exhausting just helping him get dressed.

 In the last few years I have been so focused on writing, math, social skills and the like- I was floored the other day when I realized my boy is 9 years old and still cannot tie his shoes.  There have just been more important things to work on.  So now that, along with practicing taking his helmet on and off, snapping it, and wearing his mouth guard- he must learn to tie his shoes. No pressure pressure.

We had to have our first meeting with the coaching staff and the vice president of our league regarding the boy and his not wearing his mouth guard and keeping his helmet on. It is a safety issue and the coaches are first and foremost concerned with keeping the boys safe. So the vice president tells us he went out and found a lady who started an all autistic kids soccer league.  She gave them some pointers about things to keep the boy going. I was IMPRESSED. They went above and beyond and are wanting to help the boy learn the game, but stay safe. I got a little choked up to be honest- it was a wonderful thing and not something every organization would have done.

So week 2 has begun- and our first scrimmage is in a week. The first real game is in almost 2 weeks.   My little cheerleaders sound like chipmunks, and Teenzilla got a "solo" in her cheer. And the mister just told me the boy has been assigned as a tackle...we'll see how that pans out.

Thursday, August 18, 2011

Surviving football- one week at a time

So the boy started little league football this week. To say this is monumental is an understatement. Team sports and autism don't always mix- at least for us thus far. But this week has been amazing for my boy.
Damn he is cute!

My first place girls last year!
Little League Football is GRUELING. 6 days of practice a week- 2.5 hours a day. In the heat. In full football gear (which I need a crash course on getting him in to..what an ordeal!) Top that off with me working 8 hours a day with 3 year olds and then coaching the freshman cheerleaders. Yeah- I am insane- but I love it.

I haven't got to watch a lot  of the boy practicing- getting it all via text from the mister during - since I am alllllll the way at the other end of the practice field with my adorable little cheerleaders. But  I do see him running on occasion and will yell encouragement- but I am not getting to see the bulk of what he is learning.

From what I hear- he is doing o.k  He is woefully out of shape and has not played an organized sport since our soccer debacle 4 years ago.   But hubby says he is taking coaching without shutting down, or quitting, and he does seem to be trying. "Chalk Talk" is apparently not his thing- and he zones out.   But he is still there- participating and developing skills and a sense of accomplishment I hope. And that makes my heart so very happy...

Every day this week- we have gotten home, had a few minutes of down time and then it's get dressed and to the field. He has not complained- he has not said I don't wanna go, he just gets ready and GOES.  And then there is whiny Teenzilla, "I HAAATTTTEEE CHEER!"  and her "team" of clique-y punk ass teen girls which makes me question my motives a hundred times and it is ONLY THE FIRST WEEK!

Today we got stuck in the clubhouse because of thunder and lightning and I had a minute to talk with the head coach... Coach "Z". He said he has hope for Noah- it IS only the first week, and he said he won't pull any punches- if after next week he doesn't feel like Noah is going to be able to hack it- he will tell us. But he also said he thinks Noah is a great kid and has potential- just like the other boys on the team. "Don't worry Coach" he said to me today...and while that is easier said than done - I have to say I do feel a little better.

My biggest worry is if he makes it to the first game- I will be  on the sidelines with my cheerleaders- RIGHT BEHIND THE BOYS! Talk about stress! And the fact that he is SUPPOSED to get 4 plays a half..Goddess help that coaching staff if he doesn't!

But I am getting ahead of myself..let's just see if he makes it to the first game. I hate to sound like a Debbie Downer- but it worries me. He is proud of himself- his dad is over the moon and I think with a little time he will really get this football stuff.  So that alone should get keep him going... pride in himself is the most important thing to me.

Now I just gotta get my mini cheerleaders in shape and keep Teenzilla on track. Oh and drag my ass outta bed at 4:15 A.M. every morning. And still be ON for my kiddos in all the between times.

Damn- there are still  9 weeks left.....I need a glass of wine and a nap.

Monday, August 15, 2011

10 Things Your Student with Autism Wants You to Know

Football starts today. Which means school starts in two weeks... the boy will be starting in a fully mainstreamed 4th grade class in a NEW school. I am more than a little nervous- about all of it.  So I re-read Ten Things Your Student with Autism Wishes You Knew by Ellen Notbohm. I made my own comments on some of the points.  I WILL be gifting this book to his new teacher. Let's hope this one reads it. ( His first teacher in kindergarten didn't even crack it open)  Here are the main points of the book.

1.Behavior is communication.  All behavior occurs for a reason.  It tells you, even when my words can’t, how I perceive what is happening around me. Negative behavior interferes with my learning process.  But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.

There is no more meaningful statement than this. ALL children communicate through their behavior. 

Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from “bad” behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don’t understand what is expected of me. Look beyond the behavior to find the source of my resistance.  Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings.  Over time, a pattern may emerge.

The boy DOES want to learn! He doesn't want anyone to be mad at him- and he hates not knowing what people want and he can't understand.

2. Never assume anything.  Without factual backup, an assumption is only a guess. I may not know or understand the rules.  I may have heard the instructions but not understood them.  Maybe I knew it yesterday but can’t retrieve it today. Ask yourself:

Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I’m asked to do a math sheet, maybe I don’t know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids.

Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn’t eat breakfast and am now famished.

Remember- when you assume you make an ASS out of U and ME.

3. Look for sensory issues first. A lot of my resistant behaviors come from sensory discomfort.  One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me. The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. 

Or maybe I need to sit closer to you; I don’t understand what you are saying because there are too many noises “in between” – that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding. 

Ask the school occupational therapist for sensory-friendly ideas for the classroom. It’s actually good for all kids, not just me.

Ahhh..the lovely sensory issues

4. Provide me a break to allow for self-regulation before I need it. A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn’t so far physically removed that I won’t be able to rejoin the activity flow of the classroom smoothly.

A "break" after the meltdown means NOTHING. The break is before the storm to prevent the resulting meltdown from too much stimuli.  

5. Tell me what you want me to do in the positive rather than the imperative. “You left a mess by the sink!” is merely a statement of fact to me.  I’m not able to infer that what you really mean is “Please rinse out your paint cup and put the paper towels in the trash.”  Don’t make me guess or have to figure out what I should do.


6. Keep your expectations reasonable. That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me.  Maybe I’d be better off helping the school secretary put together the newsletter.

Forcing him to do something that might be downright painful for him is not helping!! 

7. Help me transition between activities. It takes me a little longer to motor plan moving from one activity to the next.  Give me a five-minute warning and a two-minute warning before an activity changes – and build a few extra minutes in on your end to compensate.  A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently. 

This is SO important- transitions using a picture or written schedule, a bell or other sound are imperative 

8. Don’t make a bad situation worse. I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don’t mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis:

·        Raising pitch or volume of your voice.  I hear the yelling   and  shrieking, but not the words.

·       Mocking or mimicking me.  Sarcasm, insults or name-calling will not embarrass me out of the behavior.

·        Making unsubstantiated accusations.

·        Invoking a double standard.

·        Comparing me to a sibling or other student.

·        Bringing up previous or unrelated events.

·        Lumping me into a general category (“kids like you are all the same”).

All of these are cruel and counterproductive for ANY child

9. Criticize gently.  Be honest – how good are you at accepting “constructive” criticism?  The maturity and self-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you.

  • Please!  Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you.

  • Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me.

  • Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response.

  • Practice or role-play – show me—a better way to handle the situation next time.  A storyboard, photo essay or social story helps.  Expect to role-play lots over time. There are no one-time fixes.  And when I do get it right “next time,” tell me right away.

  • It helps me if you yourself are modeling proper behavior for responding to criticism.

10. Offer real choices – and only real choices.  Don’t offer me a choice or ask a “Do you want…?” question unless are willing to accept no for an answer. “No” may be my honest answer to “Do you want to read out loud now?” or “Would you like to share paints with William?” It’s hard for me to trust you when choices are not really choices at all.

You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself.  Providing me with frequent choices helps me become more actively engaged in everyday life.

  • Whenever possible, offer a choice within a ‘have-to’. Rather than saying: “Write your name and the date on the top of the page,” say: “Would you like to write your name first, or would you like to write the date first?” or “Which would you like to write first, letters or numbers?”  Follow by showing me:  “See how Jason is writing his name on his paper?”
  • Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can’t.  When this happens, I won’t get as frustrated if I understand why:

    1. “I can’t give you a choice in this situation because it is dangerous. You might get hurt.”

    1. “I can’t give you that choice because it would be bad for Danny” (have negative effect on another child).

    1. “I give you lots of choices but this time it needs to be an adult choice.”

The last word:  believe.  That car guy Henry Ford said, “Whether you think you can or whether you think you can’t, you are usually right.” Believe that you can make a difference for me.  It requires accommodation and adaptation, but autism is an open-ended disability.  There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I “can do it.”  Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I’ve left your classroom.

I hope you will share this blog- it is my goal to help as many parents dealing with this back to school thing as I can!

Thursday, August 11, 2011

Road Trip!

As promised- here is the next installment in the "One Time In Chicago" series. But I am lazy and tired and unfocused- so the "series" may be just this one blog....
Candy Ass and I getting ready to go!

 So- the original plan was to take the train from Detroit to Chicago. Then shit happened and it turned out that my fellow Mom Who Drinks and Swears Candice  would be flying in and then renting a car and we would just drive there. Saving me some $$$ and giving us time to bond!

And bond we did- the drive from Detroit to Chicago is a little over 4 hours. Not too bad. But- Candice was buying a car- it was in Illinois and we were going to take a slight detour so she could go see and drive it. Cool- we didn't have time constraints- other than just being insanely excited to meet the rest of these  foul mouth, booze, swilling mamas.

Our detour took us off the freeway onto the surface roads- where we saw a terrible car accident, got stuck at a four way stop that apparently threw every single driver into a complete tail spin and then finally to her new car! ( which WAS a Mercedes- drove like a dream and the ass who worked at the dealership sold it out from under her...)

Night vision drunkenness!
The add in an interesting trip through Joliet Illinois- which we couldn't figure out if it was ghetto or nice- so we just settled on Ghetto Fabulous- a stop for night vision goggles and then a very round about trip to the hotel and we had ARRIVED!! 7 HOURS LATER!!! 

Meeting all of these women after having been friends online for over a year was so amazing- words seriously cannot express it. I have never hugged so many people in such a short amount of time It was HEAVEN!!

Oh Nikki you're so fine!
Then off to the rooms for cocktails- and I finally got to meet the crazybeautiful genius that started MWDAS..Mizz Nikki herself! We hugged like long lost sisters -( which is what all of these women have become to me- sisters)

The rest of the weekend is a semi blur of drinking, planking, singing, dancing, swimming and talking talking talking! I have never felt so comfortable with a group of essential strangers- and can't imagine life without them in it now.  
Outback Parking lot Plank!

Pool Table Plank!

Who the fuck are you?!?!
All of these women- together for a whole weekend- and not ONE OUNCE OF DRAMA! NONE!! That is how easy it was. It is truly inexplicable. 

So to my honey badgers- CALM THE FUCK DOWN.  We will see each other next year - count on it! 

Tuesday, August 9, 2011

This One Time in Chicago

This One Time in Chicago a group of super amazing women from Moms Who Drink and Swear met up- most of them for the very first time. They came from all over the country...they were even international. It was a beautiful, amazing, wonderful time- and complete strangers were immediately like family.

Over the next few days you will get to hear some stories about this epic weekend and a glimpse into the lives of some super bad ass honey badgers.

A select few of the awesomeness that is MWDAS
Stay Tuned