Why does Boo use sign language, don’t you want her to talk? 

Yes, I do want her to talk but I also think having a second language is so helpful these days.

Yesterday I took the day off. Completely off. No work, no housework, nothing but spending the day with Allie. 

First we dropped Boo off at her school. Then….

We went to Dunkin Donuts and discovered the joy of the new Oreo donut. We went shopping. When offered the choice between doing our nails or going to a playground she chose the playground. We went to lunch, her choice where she could make our own pizza.

I was told I was the best mom ever (I am writing it down to remember when she is 16). I was told that we ‘have the most fun together’ (I am saving this for the college years). 

Then I was told something was missing. I’m biting my tongue to not tell her to be selfish when she says:

The only thing missing was Boo.


So we went to get Boo from school and finished the perfect day.

Today instead of going to work and getting a sitter for Allie I am taking a day off. Completely off. From housework, real work, laundry, etc…We are dropping Boo off at school and spending the day just being us.

We are going to lunch, getting our toes done, who knows. We are just spending Allie & Me time.

Enjoy your day! 

Stupid people shouldn’t bother me, but they do. The sad part is that they are not even stupid (and I should probably be ashamed for passing judgement like they did). But it is so frustrating sometimes.

This afternoon I took the girls to Mass. Usually we go Sunday mornings, but being a tad bit selfish I thought let’s go to 4p and then we can ‘sleep in’ tomorrow (yeah right). Anyway, Boo is never the perfect practitioner, she always screams ALLIE at the wrong moment, tends to laugh and squeal at the wrong moment. But I persevere. We will be a “normal” family and go to Mass (in all honesty, most not all weeks). We will not sit in the baby room. We will go to the child friendly one so that she is not so obvious.

My reasons for sitting in the pews are twofold. One, how can Allie know how to act in Mass if she is relegated to the baby room. Second, Boo isn’t THAT bad. Sure she squeals and talks loud when it is not appropriate. But at least she sits in my lap and (for the most part) behaves.

But this week, I screwed with the schedule. (oops probably shouldn’t use screwed when talking about Church!). Instead of going bright in early in the morning, I chose to go in the afternoon when Boo already had a bad day. Like horrific. Like I wanted to run away at one point because it was getting so bad. 

So here we are in Church and Boo is acting like Boo. Not terrible, but not perfect. Then all of a sudden she had too much. I don’t know too much of what, but whatever IT happened to be, the woman in front of us did not appreciate. Now, to be totally honest, Boo wasn’t too bad. She just started laughing and trying to hug Allie. 

Then all of a sudden a switch was flipped and (maybe because she had to be still) Boo started pounding her head against my shoulders. All of a sudden I felt like a spotlight was on us. I wanted to shout: LOOK PEOPLE I don’t know why she is doing this. If I did I would know why she does it on the pavement, the wall, anything without a soft cushion (believe me I’ve tried to redirect to soft surfaces). 


They don’t know that she is suffering from a roller coaster of constipation to diarrhea to constipation. That her ass is a mess from being torn by the constipation and burnt by the acidity of the diarrhea. They don’t know that she didn’t sleep well. 

They don’t know that they are lucky to have children who do not suffer.


The looks range from pity to “why can’t she control her”. And it undoes me. Seriously, for the first time I sit in the pew and think: Why?  Why has God done this to her? To our family? What did we do to seriously piss him off? 

Why don’t these God-fearing people look at me in the pew with two beautiful girls and say, can I help?


Why didn’t I wait until tomorrow when my husband was home and let him stare down these people?

Why am I embarrassed? I know it isn’t her fault. Why does she suffer? I know it was nothing I have done/didn’t do. I know that this head banging must provide some relief for her. I know I am doing the best I can.

I KNOW I shouldn’t care what these people think of me or her.

But I do.

As I left Church the family behind me approached and commented on how beautiful my daughters are. 

I guess I have to stop and look around at all the faces, not just the ones who don’t understand.

• Clean her room
• Laundry
• Sweep up the dust-bunnies created by crazy puppy
• Clean Boo’s room
• Cook dinner
• Wash the windows
• Clean my room (hey, why not?)
• Clean the bathroom (okay, NO ONE wants to do that!)

Last year I started running. I needed to find a way to deal with stress and running proved to be the perfect match. Since I had to concentrate on breathing and not falling in the road (I am kind of a clutz)  I could step away from life for a short time.

I did really well, not every day. But at least 3-4 times a week I ran in the morning before anyone was awake. I even did a 5K in the fall and was extremely proud of myself. My husband also did the 5K without any training, and I admit to being quite jealous.

My problem is I am a fair-weather runner. I do not run in the rain, the cold, extreme heat or the snow. So after I did the 5K it got cold and I stopped. I had every intention of restarting in the spring. But oops, it is summer and I still haven’t begun running.

And I need to. Not just for the stress but for the thighs and butt.

Except it is 90 flipping degrees (or felt like it) and the bedroom is air conditioned. So I failed, again.

Last night I was determined to wake up early enough to have enough time to get in a quick training run/walk, get ready for work and get the girls ready for the day.
Then today, THE DAY I was going to get up and go…it was raining. Who can run in a thunderstorm.

But tomorrow, for sure. Right?

Allie is taking some summer help in math at a local school. This morning when I dropped Allie off she was telling me about the kids in her class. Some were from her current class and others she didn’t know. Allie said that there was only one other girl, a bunch of boys and one weird boy.

            What’s that? Allie replied.

Although Boo is not autistic, she exhibits a lot of similar behavior. This weekend I read an article in Outside magazine titled “Little Boy Lost” by Dan King (http://www.outsideonline.com/outdoor-adventure/outdoor-skills/survival/Catch-Me-If-You-Can-20120801.html?page=all) . It is about an 8YO autistic boy that was lost for five days in the forest. In the article they state that it is estimated that “40 percent of children with autism will go missing at some point in their lives” (page 75 section 4 of the article).

It happened to Boo this week.  She not only escaped from her classroom, she wandered quite far from the class into the hallways of the school.

Fast-forward six-months and Boo’s teacher not only requests an assigned aide, an updated IEP and a transition to a dedicated special needs class for half the day. This new program began this summer. Again, we expressed to the teachers & aides of Boo’s tendency to wander. It was agreed that all doors would be shut and that Boo would have a person assigned to her well-being w

Thursday it happened. One teacher thought the other was working with Boo, when they notice the door was opened (handicapped, so much easier to open for Boo!) and no Boo to be found. They were unsure how much time had elapsed, quickly got coverage for the other children in the class and went to on a Boo hunt. 


This is when I know that Boo has a guardian angel looking out for her well-being. As this is the summer, the school is not locked to the public and the front doors were wide open. Had Boo taken a left out of the classroom she would have been a short walk to the great outdoors. Had this been during the traditional school year, there would have been students milling around and she might have been tripped or run down by an energetic child. 


But she took a right turn and ended up in the middle of the school. Quite a distance away from her class, but still a right turn. One that led her into the relative safety of the indoors. Thankfully her teachers found her in short-order, thankfully she is fine and this was a lesson learned for all of us. 


Her daddy, rightfully so, went nuclear when I told him. He didn’t understand why I was calm about the incident.


First, I have been waiting for this to happen for six months and was just thankful that it happened in a somewhat controlled manner. Secondly, we are not saints and it has happened to us! In the front yard, blink for a moment and she is gone. Sure the teachers were warned but until it happened they would not believe us. Lastly, I do not want to ever think the teachers cannot tell us something. I want them to know I not only will I not ‘overreact’ I will work with them to figure out a solution that will work in the school and home too.


I wasn’t going to post about what happened on Thursday. But after reading the Outside magazine article, I felt compelled to share the story. Boo was missing for, at most, 10 minutes and I was completely unaware. Because Boo is virtually non-verbal, had her teachers not told me, I would have never known. Had Boo taken a left-turn and been found by a stranger she would not have been able to give them any information. Even scarier, had she taken a left and gone unnoticed she very easily could have run into the busy street. She is so petite, a driver may not have noticed until too late. The what-if scenarios are endless and nightmarish.

If 40% of autistic children ‘elope’ how can they not figure out why? With all the money in medical research, they can figure out how to keep a man happy but not our children safe.


Personally, I am going to see if they can get a door alarm for Boo’s class. I am going to look into a medical alert bracelet for her to wear with her name and number (the trick will be making her wear it). I may even go the extreme and start labeling the inside of her clothes! 


I would be very thankful for any other ideas. What do you do to make sure your child is safe if they wander?

40% of autistic children go missing. Thank God Boo took a right-turn.