He's a stickler for traditions

Autism has changed just about everything in my life. I have met people that I would have never met, researched more than I ever did for anything in college and learned to be more flexible than I ever thought I would have the ability to be.
As we are making our way through this holiday season, I have noticed more and more how OCD my son has become and how this new development is changing our lives. Or, rather trying to keep it exactly the same.
With Halloween it was the peel and stick window clings. We have had the same ones for years and I do generally put them in about the same place, so this year I thought I would mix it up and bought some new peel and sticks. I'm wild like that.
Stella and I thought we would surprise the boys and have the house decorated when they got home from school.(Really, this was my attempt at not having to decorate the house with all three of my super helpers present)
As Miles came up the driveway from school I could see the panic on his face. He nearly jumped out of the moving vehicle when he saw that not only had we added new decorations, but had moved the location of the old decorations. I spent the next 45 minutes consoling Stella over the destruction of her had work and consoling Miles over the window that I promised Stella I wouldn't let him disassemble.
Later, he dug through the basement until he found the third wooden pumpkin to complete the set from the year before, as I had only brought out two of the original three.
We managed our way through Thanksgiving with little trouble. Apparently, he is not as attached to some of those traditions. We did however, have to say a personal good bye to each and every pumpkin and gourd in the house before sending them on their merry way with the garbage.
Christmas is bringing it's own challenges. You would not believe how difficult it can be to decorate a Christmas just as someone remembers it in their own mind from the year before. He did chill once we got Thomas the Tank Engine safely in his predesignated position. What would I do without Thomas?
I was surprised too when this morning he did not want to go and get the tree because the moon was not out. We did eventually convince him that it would be okay to get the tree in sunlight, but he muttered about the moon the entire car ride and said he was scared when we got to the tree lot.
He is in bed now, after asking for the 5,000,000 time what day it was. He was not satisfied with any answer that involved the word November. Apparently, we can only buy trees in December.
After trying to reason with him and showing him the calendar to no avail, I just proclaimed it 'Tree day' and saved us all a lot of grief.

If it itches....

I got a phone call from the school clinic yesterday informing me that Miles seemed to have a persistent itch down south. His APE (adaptive physical education) teacher had brought him into the clinic.
I was later told by a friend who teaches at the school that she indeed saw Miles and Mr. I in the gym. Miles was trying to persuade Mr. I to take a look at his itchy parts and Mr. I was adamant in his refusal.
So, off to the clinic they went.
This is when I received the phone call. The 'nurse' informed me of the apparently unscratchable itch and expressed grave concern.
My thought was, he's a boy, he probably didn't wipe well, he's bored......
When I asked if she noticed any rash, I was informed that she was just a sub and not an actually nurse at all and checking random boys for rashes was way out of her area of expertise.
It was decided that he should be sent home so that I could properly investigate the rash and apply an anti-itchy cream.
My question is what is the use of a substitute nurse if she is not even willing to take one for the team and investigate a little rash.
There was no rash. Maybe some dry skin. Maybe.
He came home. He played on the computer. I think he secretly laughed about the nurse who refused to sneak a peek at his bum. He did not scratch his itch.
I actually wrote a note in his notebook today that if he is to start itching again, maybe suggest that he itch in the bathroom and then wash his hands.
My hubby of course thought it was hilarious and called him Mr. Crabs all night. The kids of course, thought we were referring to Mr. Krabs on Sponge Bob and Stella started calling herself Sandy.
Never a dull moment.

Can you hear me now?

There are all kinds of reasons why I hate going to urgent care. My co-pay is higher, the people in the waiting area seem sicker and the doctors seem like they would rather be just about anywhere else in the world.
So, when Miles stuck a bb in his ear the other night, I quickly weighed my options.
* leave the bb and play dumb until my husband is around to go with him and sit in the urgent care.
* try to fish is out myself.
* heck, the Dyson has some serious suction, I could always......
Although I seriously thought about the vacuum and even held it up to my ear to see if it would hurt, (it kind of did). I thought I would rather go to the urgent care to get a bb out than have to explain why my son had a bb in his ear and his eardrum had been sucked from his head.
Also, the other kids knew about the bb, so I figured they would call me out if I tried to play dumb and pass the job to Dad.
Three hours later after sitting as far as possible from all the mask wearing, feverish, flu symptomatic sickos, we got our call to see the doctor.
She came in and I think she was like 14 years old, and she says, "I hear someone has something suck in their ear, which one of you gets to see my cool 'light-saber'?"
I thought she was kidding, but she made no move towards Miles, so I kindly directed her away from me and toward my 7 year old son.
Really? Do you think they get a lot of adults in the Children's urgent care to have bbs dislodged from their ears? Apparently.
For the record, her 'light-saber' was cool. It was a little wand that glowed so she could see into the ear while she was fishing out the bb.
But then she stumped me again when she handed the glow stick to my son. Which he promptly stuck into his ear.
If he busts his eardrum, they better not charge me another co-pay.

I don't care how thick my skin is, sometimes it just hurts.

A few years back a pediatrician that we had landed with for the moment and thought, for a moment, we were happy with gave me this less than stellar advice..."Miles is just different. He will always be different. So instead of focusing so much on how to change him, you would be better off just growing some thick skin and getting on with it."
I can't remember what my question was that prompted her to say that. I just remember leaving there with my head sort of spinning, wondering if I should take my kids medical files with me now or pick them up later, because I sure as hell wasn't coming back.
Well her advice was crap. Except for maybe the 'grow a thicker skin' part.
I have found that I have stopped noticing as often when people stare or respond in a less than sensitive way to some of Miles' behaviors.
I don't have the time or really the desire to explain to every person that seems uncomfortable around my kid what exactly is going on.
For the most part he pretty much blends right in and save for some random flapping in most situations you wouldn't even be able to tell that he has autism.
So when I got pulled aside a few weeks ago at his gymnastics class to be informed that they did not any longer feel he was a good fit for the class I was shocked and happy for my thickened skin.
It took every ounce of will power and energy I have to not bust out crying as I was being told that the coach running Miles' class wasn't used to working with 'special' kids. Any other coach would love to have him, but this just is not a good fit and could I please get him out of class now and maybe try back another time for another class, where he might fit in better. He is doing great, blah, blah, just not a fit with this class, blah, not fair to the other kids. Ouch.
The worst part was that when I walked up to pull him out of the class he was fully participating, as he had been each week, and had the biggest flippin' smile smeared across his face.
When I asked him to come on because we had to go home, he responded with,"Mom, not now I am doing my gymnastics."
Thick skin or not. That hurt like hell.
My husband met me in the parking lot. He was coming to take over so that I could head off to a curriculum night at school.
He dropped the kids off with his parents and then went back to the gym to let the staff and owner know what we thought of their lack of sensitivity.
We had after all spoken with them before the classes started about our concerns and we were assured it would be fine.
There is just nothing like the disappointment of your own child to break through even the thickest skin.

The wheels on the bus go round and round.....

So here is a little diddy that made me laugh after the fact. I was too stricken with anxiety the day it played out to see any humor in it. Now, I think it's kind of funny.
The first day of school the kiddos and I gathered in the driveway to wait for Miles' school bus. He was anxious. I was a wreck and there was a lot of tension in the air. We were strangely calm and ready early. Way out of character for us. As we stood there in a sort of huddle waiting for the bus, this conversation ensued....
Me: Okay Miles, your bus will be here soon. hand wringing
Miles: No Mom. I no go school. hand wringing
Me: School is fun. liar You will be fine. doubtful
Miles: No Mom. I stay home.
Caleb: It's okay Miles. You get to ride the bus. The bus will be so cool. I wish I could ride a bus to school.
Caleb: whispered to me. I hope it's not a short bus.
Me: Evil glare, but thinking the same damn thing.

Now before you think I am a horrible person let me just tell you this. Do you remember those little jerks that you went to school with? They made fun of you for not having the right outfit and they made fun of your bff for her frizzy hair? Well, they also made fun of the 'short bus'. Well, guess what. Those jerks grew-up and some of them had kids and some of those kids go to school with Miles and I don't want them to have anything on him. Not funny clothes, not goofy hair, no short bus.
In case your curious. The bus was medium. Not full size, but not quite short. And he loves it.

911 what's your emergency? Sucky baseball? We'll be right out.

I am always worn out after baseball night, because I expend a lot of mental energy trying not to yell harassing comments at my son.
"Swing the damn bat."
"If you watch one more strike fly by without swinging, you will have to find someone else to pay for Fall ball, because it won't be me."
"Wake up in the out-field."
"I've seen your sister throw harder than that."
You get the idea. I spend a good deal of my time chasing the two kids not on the field around the park and thinking of nice ways to tell the one on the field he's sucking it up.
The hubby throws the kid 800 pitches a night. He hits 790 of them. Still he freezes up in the game and it just gets ugly. Last night, they were behind by one run. Two outs, bases loaded. My sweet boy watched as three strikes flew by. Never swung the bat. Never. Swung.
Needless to say, I was already in a stellar mood when some woman stomped up to me, hands on her hips, "Just so you know, your son just pushed the 911 button."
"Um, okay. I'll talk to him."
"He would NOT listen when I told him to stop. The police will have to come out. You need to wait and tell them what HE did" she said as she jerked her head towards my flapping, circle running son.
"Okay. We'll wait and explain.Thanks."
She stood there staring, hands still on hips, eyebrows raised, lips pursed. I think she was expecting me to give Miles the shake down. Give it to him good.
It wasn't going to happen. I didn't even want to try to explain to this ninny that, oh he's autistic, so he wasn't ignoring you he probably just didn't realize you were talking to him you arrogant bitch.
I took great pleasure in watching her stomp off, mad that I had not properly disciplined my little heathen.
When she was gone, I explained the button to Miles. We waited for the police, glad it wasn't a real emergency as he took his sweet-ass time getting there.
We did not get thrown in jail.
I told Miles that he may need to use that button again next week, because if his brother watches one more strike go by and doesn't swing the bat, I just might beat him with it.

Please note that I don't ever actually yell those comments at my son. I just wish I could. I did however really threaten to beat him with the bat. He knew I was kidding. For the most part. Also, I don't take calling 911 lightly. I just didn't appreciate the way the woman behaved.

Game on

Every year when the unofficial kickball season gets underway in our neighborhood I know that summer must be around the corner.
I don't know if this is just a phenomenon that occurs here in our little patch of the world, but the kids in this neighborhood take their kickball seriously.
Once the days get longer and the sun is stretching itself into the post dinner hours it's game on. At least a few nights a week there is the inevitable knock at the door and behind that knock there are a couple of kids letting us know that it's game night.
The scene is as about as 'Leave it to Beaver' as you can get. Kids running up and down the street gathering in the 'green space' within our circle of homes.
I need to get pictures. There are usually 20-25 kids and a handful of adults. The sight of it all makes me want to sit down with a slice of apple pie in one hand and a sparkler in the other and belt out my own off-key version of 'God Bless America'.
The usual routine is that Caleb plays and Stella,Miles,Dad and I are in the cheering section.
Unfortunately, during the last game, Miles decided he wanted to play. This was unfortunate only because that meant I had to play with him.
Did I mention that these kids take their game seriously? Did I mention that it is shocking how fast an 8TH grade boy can throw a playground kickball? Did you know that in kickball it is perfectly acceptable to tag a running player out dodge-ball style?
Super.
Being that I am always supportive of Miles efforts to join in any activity, I only felt mildly guilty about trying to discourage his desire to join in the kickball game.
Yet, my warnings went unheard and before I knew it we were up to 'bat'. He understood the kicking. Not so much the running of the bases. This was where my super sweet kickball skills were put to the test.
We ran the bases hand-in-hand. He cracked up the entire time. I prayed to God that I would not get tagged in the back by one of the 8TH grade boys, who apparently have caught on to the new steroid craze.
The other kids were awesome. They whole-heartedly included the both of us. They let us run the bases unscathed.
Other than being reminded once again that I need to get into shape ( I was totally huffing after my base running) it was a really fun time.
I wanted to keep playing, but Miles apparently got it out of his system and was happy to return to the cheering section.
I was afraid the kids wouldn't be as kind to me if I was running the bases solo, so I returned to the cheering section with Miles.

Happy Autism Awareness Month: part deux

Holy hell. Miles got the memo about it being autism awareness month and he is doing his part to raise awareness.
It has been a flappy, squirmy, whiny, OCD, filled month. And those are just my symptoms.
We need to make some changes and get him back on track. We do a lot of supplementing with him and lately have let that slide. It is starting to take a toll on his behavior. I do like to take him off all of his supplements occasionally and slowly reintroduce each thing. It helps to determine what is continuing to benefit him and what he could maybe do without. It is time to begin the reintroductions.
We also changed our funding from Family Directed Resources to a level one Waiver and in doing so had to change out all of our therapists. We have yet to find replacement therapists.
We were on a wait-list for almost three years for the waiver, which is not bad, considering neighboring counties have wait-lists that run for over 10 years. Unbelievable.
Now that we have the waiver, we are on wait-lists for people who except the waiver. I am still unsure if the benefits of the waiver out weigh what we were receiving through the FDR. I am waiting it out. Don't want to make any quick decisions and end up back on the bottom of that wait-list.
We have a new therapist/intervention specialist coming over tonight. She will work with Miles throughout the summer.
I am crossing my fingers that all goes well. I think it will. We know her fairly well and she is a trooper. We need a trooper.
I have seen Miles drop speech language pathologists like a hot potato. He is a rascal and can put even the best through their paces.
I guess that is one of the things that I love so much about him. He keeps us on our toes.

Happy Autism Awareness Month

Here it is already April 3RD and I haven't even wished you a happy Autism Awareness month. Shame on me.
We have so much to be thankful for. Our beautiful boy has come so far in the last several years. He has a long road ahead of him, but he has what it takes to rise to the challenge of whatever autism brings to the table. Game on.
He teaches me new things everyday. He has brought a layer to my life that would have gone forever unknown had it not been for this kid. He makes me a better person.
He is funny and loving and consistently wins the hearts of anybody lucky enough to know him.
In an ideal world there would be no Autism Awareness month, because there would be no Autism. This world does not work that way.
I can deal with autism because of him. He makes the worst days worth it. If he can do it so can I. It is with his small boy hand that he reaches out, touches my heart and says, "Come on Mom, we can beat this thing together."

Roy G. Biv

Miles loves rainbows. When we are out and about he goes through this thing where first we have to find something red, then orange, then yellow and so on until we go through the whole Roy G. Biv.
Winter makes this even more of a challenge. There is no gray in Roy G. Biv.


Miles decorated his fingers and toes with "Rainbows". He was very proud of himself

He did not want to wear socks or shoes all day. Couldn't hide the rainbows. Thank goodness we didn't have anywhere to go!

We think he will eventually grow into those front teeth! He is so cute. I love that boy!

What Expiration Date?

Today, I was going to write about my MIL and her unwillingness to accept expiration dates. I love my MIL. She is great and would do anything for myself or the kids.
I worry that some day she will come across this blog and her feelings would be hurt if she read what I was going to write.
So, I will just say that she does not believe in expiration dates. For anything. Milk, meat, cheese. If it has been frozen, it is good. I recently saw some chicken from 1994 in her freezer. 15 year old chicken. Yummy.
Recently, she discovered the little green bags. As seen on t.v.. Bananas last indefinitely. You know the ones.
She bought me some and I tried them out. The strawberries did last longer, but they got strangely hard.
In my mind I pictured some weird space-aged chemical seeping from the bags into my strawberries keeping them from aging. Years from now I would notice that the children were not aging, due to the high amounts of the anti-aging chemicals they had ingested by eating 'fresh' fruit.
I couldn't do it. I couldn't keep my berries from aging. I had to let them go naturally.
I am afraid my MIL is going to buy these bags in bulk. I am afraid we are going to go over one day and everything in the fridge and pantry will be 'green-bagged'. I bet she could get one more year out of her 2001 mayo if it's in the green bag.

Home Today

I kept Miles home from school today. It wasn't because of the bully. At least that is what I keep telling myself. Maybe it has a little to do with the bully. I just wanted to keep him home today and give him lots of hugs.
He also still has a bad case of the crap. Crappy cough, green crap coming out of his nose, crap stuck in his eyes. You get the idea.
I am sure he could have gone to school today. But, I am his Mom and so I get to decide that he just needs to be home with me today. Maybe I needed to be with him some too.
I am 'that mom'. The mom that has trouble some mornings waking up the kids, who are sleeping so warm and snug in their beds. Sometimes the thought of waking them and sending them out in the cold gets the better of me and I just let them sleep.
Then they wake up and I say, "Oh shit, what have I done!"
I rush to get them ready for school. Stuffing them into their coats and mittens, all of the 'warm and snug' thoughts gone, so I can have my few wonderful hours of peace and quiet.




Stella looking warm and snug. In this state, I am convinced that my children are lovely and quiet and listen to all of my Motherly suggestions. Then they wake-up.

Pretending to be Kitties

Stella and Miles are fascinated with Myrtle's ability to sit in the window sill or perch on the arm of the couch. Our only pet before the kitty and the pup was a big dog. He wasn't perching on anything. They like to pretend to be kitties.


On this day I came downstairs to find the bunch watching their cartoons like this. I thought it was funny.

You've got a friend in me.

I try to not be a complainer. I try to 'look on the bright-side'. I think if I didn't, I would go down. Hard.
Miles has been having an 'off' couple of weeks. He has been getting notes home that say things like, 'Miles needed a lot of extra sensory input today.'
Which means he is doing a lot of flapping and running and squeezing. He also started having accidents at school this week. He has been potty trained for over three years and I can't tell you the last time he had an accident. Until now. Four. This week. Three at school.
I took him to the doctors thinking maybe a UTI? I was reaching. Grasping at straws. Trying to supply the school with an explanation.
It was a no go. Sorry, no medical explanation.
I wish I could sit him down and say, "Hey look. Unfortunately you already have a long road ahead of you. The last thing you need is to be known at school as the pee-pants kid."
I know this seems harsh. But, that is how much I love him. As much as I want him to succeed academically, I also want him to be accepted socially. I want him to have a friend on the playground.
When I was in high school, there was this kid. His name was Lucas. He was tall and strong and he used to move his fingers in front of his eyes. Sometimes he would reach out and try to touch you. I was afraid of him. Looking back now I am certain he was autistic. Just like Miles.
I had a friend who wasn't afraid. She would always say hi to him. She would yell at people who teased him. I pray every day that Miles has someone like her to be his friend at school. Someone who is braver than I was back then.
I am making up for it now. I am not scared any more. I am so proud to be his mom. I bet Lucas' Mom felt the same way.