I don’t know quite how it happened. It’s not like I don’t have enough to do in the hour, let alone the week, month year. I think it went something like this:

An innocent mom (hey innocent until proven otherwise!) picks up her daughter from school. The assigned aide asks the innocent mom to come to this week’s PTA meeting at the older child’s school. They need someone to ‘just help out’ and take notes at “the” meeting (notice I said “the” and not all”). Would I please just help out?

Two minutes into the meeting and I am voted in as the co-Secretary. But ‘don’t worry’ there is very little to do, 2 hours a month. The meetings are at night (in the school so no adult beverages). During the school year. There is a co-secretary who will do most of the work.

They neglected to mention the planning sessions (who knew, I am part of the executive board!) during the summer. And once a month has now turned into twice a month. The meetings are not 2 hours, but 3-4. With an additional couple of hours back and forth finalizing the notes.

The second meeting the other innocent mom, I mean co-secretary doesn’t show. Doesn’t respond to any messages. Of the 12 member board there were only 5 attendees. I offered to the PTA if the meeting was held in a Pub they would have a lot better attendence–I don’t think they saw my humor.

Last night was the third meeting to “plan” the coming year. The two hour meeting turned into three hours with very little resolved. Other than they “hope” I can help out with three events in August and there is another ‘planning’ meeting scheduled for three weeks.


I cannot even use the excuse that there was wine involved.

Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot .  It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.

In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.

Not only did the parents lose any hope of privacy, so did the other children.

It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.

The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.

But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!

When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.

We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.


When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.

I better make sure Boo’s socks match.

We have completed two days of implementing the PECS program at home. Here is how we did:

Day 1 “Creation”. Those that know me, understand that not only am I the least craftiest person on the planet the mere thought of entering a craft store makes me start thinking that it is 5 o’clock somewhere. First I went to http://www.do2learn.com and printed off the images (easiest part of this project!).

Then off we went, the girls and hubby came to help navigate the sheer quantities of craft supplies (really, who needs that many ribbons?). We picked up the felt, glue, laminating stuff and velcro. I then spent the next couple of hours cutting and laminating the images (this was not as hard as I thought although I see would still fail cutting w/scissors in kindergarten). 

With a sore thumb I began gluing the felt onto the cardboard. This was a spectacular failure. How could I possibly fail at glue? I have no freaking idea. But I bet I am the only one in the known universe who could not get felt to adhere to ANYTHING but my fingers. So instead we ended up with this:

After all this work, it was Boo’s bedtime and my wine time. Day two we are calling the crafty aunt (who Allie asked me to call while we were in the craft store).

Day 2 Boo is upset, I rush right over to the PECS window and try to offer choices. Except I forgot to take Boo with me. Go back, grab Boo and two choices.  Boo do you want bubbles or the ball? She points to the bubbles and I start blowing. As she walks over to the ball. 


This will be a work in progress!

Quick update: Crafty auntie answered my call of distress. Boo’s updated PECS:

 Now that we have the pretty tools, this should work. Right?

It’s funny how life works. At Boo’s recent Augmentive Communication appointment they asked us to retry the PECS system. We failed (in a quite spectactular fashion if I do say so myself) when we tried this about a year ago. Boo would just flip thru the picture book.

But I wanted to try. I just had no idea how. Then as fate would have it, this week at one of my favorite blogs (http://alongcamethebird.blogspot.com/2012/07/goin-old-school.html) the author offered some GREAT ideas of ways to implement the PECS system.

Yesterday at Boo’s regular SPT appointment she broached the idea of using the PECS system. Again, fate conspiring! Boo had finally started to respond (in a limited way) to using them in therapy. We both felt that the more exposure the better rate of success. (Yep, I’m a genius!).

So back to Along Came A Bird (really, you need to read her) and I find an update on PECS ideas. Read about it here (but then come back, okay!) http://alongcamethebird.blogspot.com/2012/07/more-pecs-talk.html#comment-form

Because Boo’s comprehension for PECS is so limited we are only going to use it for choices. i.e. take her to the board and use hand-over-hand to have her decide between two choices. Hopefully (fingers crossed) it will ease her frustration level and we can grow it from there.

Next step, I went to this website our SPT (have I mentioned she is a fabulous goddess!) gave us for free (yep, FREE) printable PECS. It is called Do2Learn and you can find them for yourself here: http://www.do2learn.com/ 

Now, I have them printed I just need to find some one with a laminater, buy velcro and a mat to hang on the door.

Guess I know what we are doing this weekend. And Allie says I’m not crafty.

Okay, I am not and there will probably be some laminating mishap. How bad could it get?

Today I am amazed. Simply amazed. I brought Boo to school and she went right up to  a little girl, called her by her name (Boo’s version anyway) and they hugged.

It was an awesome sight. Boo interracting with another child. Even more awesome, this little girl hugged Boo right back.

Then Boo called one of the teacher’s by name (again, her version but definitely the person’s name) as she passed by. (to be honest, I don’t even know the woman’s name!). She then saw another teacher and clearly said her name (this one I knew!).

The utter joy in Boo’s voice and expression was worth all the worry about this new school program.

There was month’s of anxiety leading up to the new school program. Originally the public school put Boo into an integrated preschool feeling that is all she needed. No one listened to us about her needs, etc… They would not give her an aide and did not start her therapies as directed. Thankfully the teacher in the program is simply awesome and took care of the aide herself and helped us advocate for the services Boo deserved.

In the Spring the teacher recommended a new program, a half-day in the preschool and a half-day with discrete (1:1) program that is dedicated to children with special needs. Those with CP, Downs, autism, undiagnosed like Boo. Okay, she is the only one “undiagnosed” but still the program seemed ideal.

Except I was beyond worried. I was afraid she would regress, that we wouldn’t have the communication we had when Boo was in Montessori.  You name it, I worried about it.

The first week was tough. It didn’t help that they forgot to feed her the first day.

The second week was less scary. It didn’t help that they lost her for a little bit.

The third week was without mishap so our fears were slightly less.

The fourth week, Boo met a friend and knew a teacher’s name.

The fourth week ROCKS!

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!)