Allie & Me 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

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.

 

Summer vacation is wasted on the youth!

I love that line in “It’s a Wonderful Life” when the old man says to George and Mary, “Aw, youth is wasted on the wrong people”.

I think the same can be said about summer vacation. Allie is ‘BORED’ and you know it is bad when she is not only bored, but bored in capital letters! And for the life of me I cannot think of why! She has played in the pool—granted the kiddie pool because we cannot trust Boo or crazy puppy with the “big” 4ft pool, gone to the playground with Daddy while Boo is in school, gone to the marina and the fish hatchery, played with her Barbie(s) and the list goes on. And let’s not forget the week she was a freeloader at our friend’s beach house—while I was at work!

I offered to give her a list of things to do. But she wasn’t too impressed with my ideas:

• 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!)

If I had summer vacation, I would be ecstatic to be BORED. I would read, yes read, a book that had no meaning at all. I would go for walks on the beach. I would…I don’t know what I would do because it has been about 25 years since my last summer vacation!

But I bet there would be a nice glass of pinot grigio!

I failed, again

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?

Out of the mouths of babes...

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.

Weird boy, I asked, do you mean the boy with Down syndrome?

            What’s that? Allie replied.

Well he is special needs, like Boo, I explained

Oh, is that why he has a teacher just for him in the class? (Yup) That makes sense now. I thought there was something different but couldn’t figure it out. Why didn’t they tell me so I could help him?

This conversation floored me on many levels. First, Allie has intuitively known that there is something special about Boo and has accepted her without conditions. I automatically assumed that she would recognize and accept it in another child. Second, Allie attends enough of Boo’s therapy appointments to see other children like this boy. I was completely astounded that she even had to ask, or worse in her mind label this boy as “weird”.

Allie has been a staunch defender of Boo. She would never let one of her friends use that term with her sister, so why did she do it with a boy she just met? Have I failed in some way in to prepare and nurture her to accept all others like she does Boo?

Of course, I asked Allie! Not that specifically, but why she did she not understand that this boy was special. She thought because he was so big and not little like Boo he was just a boy.   I asked (just to make sure) that she hadn’t made fun of this boy. She was quick to say no, but that she wished that the teacher had told her because the other boys in the class did. Allie was so cute, telling me that she would make sure it didn’t happen again! We had a long talk about Boo and how would Allie feel if one of her classmates called Boo “weird”.

But it made me think, is inclusion working? Are the teachers and other parents explaining to their children that not all children can run, read, speak like others. Whose responsibility is it really? Mine, in some way because while I can educate/prepare Allie and she can then teach her peers. But neither Allie, her dad or I can go into Boo’s class and wake up the other children/parents. I can only be responsible for the children who interact with Boo in my presence.

Is it the teacher’s responsibility? Certainty, but how can they do this without embarrassing (not the right word, but hopefully you get my point!) the child in question. Allie thought the teacher should have let the kids know.

I think the biggest obstacle is that the other parents are not on the playground or in the classroom with their children. So they might not even be aware, like me, that their child may be prejudging some one. Think about it, if you do not have a special child would you think to educate your ‘typical’ child about a child with Downs, CP, and autism or like Boo one who is undiagnosed? I will admit that before Boo I cannot honestly say I would have said something to Allie until she asked/made a comment in my presence.

I think as children get older they may become more aware (and yes, mean). But at Allie’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.

Boo is in an integrated preschool with a not so equal ratio of special/typical kiddos. Even there I notice that some parents look at us askew when Boo is not participating like their ‘typical’ kid in the class. Once a child asked their mom what was wrong with Boo and the mother, instead of educating, told the child to ‘hush’.

So I don’t know what the answer is, if integration is worth it or how to educate the world at large that Boo just has a different sense of typical.

Phew!

It was with extreme trepidation that I dropped Boo off for school yesterday morning. Last week, the first week of the new program, they “forgot” to feed her the first day and lost her on the fourth day. It was not an auspicious start!

But I am happy to report that Allie is on top of Boo’s safety. She went with Daddy to pick-up Boo and asked the teacher, “Did you lose Boo today?"

I think accountability is a good thing, don't you? Even if it is from an 8YO :)