Monthly Archives: July 2012

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 🙂

Boo played!

Boo played. By herself. She chose a toy off her shelf, took it down and played with it. For 5 minutes.
This is HUGE step for Boo. Usually she sits back and watches. But today, she played. Life is good.

Thank goodness Boo took a right turn!

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.

For a little back-story, when Boo first started this program I repeatedly warned them that she needed a one-to-one dedicated aide. I also warned them of her tendency to wander. She would not be misbehaving, just something may catch her attention and the next thing you know she is down the street. 

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.
 

 

Freeloading

Our friends have a house at the beach. Every year we go and freeload for a couple of days. Allie is always excited to go and so am I. Who doesn’t love a beach house? Cocktails, sun, sand, surf and a clean bathroom you don’t have to share with strangers.

Boo would rather be in occupational therapy. She hates the beach! The past couple of years have been torture for her. Last year was probably the aha moment where I realized that Boo not only had sensory issues but that they could and would be paralyzing.

This year was much easier for Boo. During low tide, as far from the water as possible. She stood on the hard-pack sand!

 All Allie wanted to do was surf


Even crazy puppy got in on the action (Boo was no where near the water, preferring to stay at a safe distance!)

As the tide came in, Boo felt that it was safer back at the house, so she stole Allie’s board…



 But Boo spent the day at the beach and was content to go home and relax with her pup

 We are going back this weekend. We hope to get Boo a little closer to the water!

Can I have a do over, please?

This first week back to school has been hell. No other words for it! Let me list the ways I have made mistakes this week:

Yesterday I left work early, took Boo to therapy and then went to meet Hubby & Allie at the beach house our friends had rented.  

·         My first mistake was leaving work early.

·         My second mistake was taking Boo to therapy without Allie as back-up. She was exhausted, the OT therapist was the one who doesn’t want me in the room. Another OT in the room left the door open, so Boo escaped back into the waiting room screaming for me. She was barefoot as she had thrown her socks into the trash. They take her back in and she throws the toy at the OT’s head. She comes back out, wearing the socks that she threw in the trash not once but twice. We head to the supermarket where I made…

·         My third mistake, the supermarket at 5pm. Boo tried to hug everyone and was upset when they wouldn’t hug her back.

·         My fourth mistake was heading to the beach. Where Boo screamed most of the way until I started feeding her pretzels and teddy grahams.

·         My fifth mistake was staying until 9pm.

·         My sixth mistake was waiting until I got home to open her lunch box to discover Boo hadn’t eaten or drank anything ALL DAY at school.

·         My seventh mistake was letting Allie stay at the beach with hubby and friends until the fireworks/bonfire because….

I had to wake Allie up at 7am for summer school, then woke Boo up at 7:30, so both girls were miserable because we spent too long at the beach.

I dropped Allie off at school at 8am, went to the store b/c I realized my mother’s birthday is TOMORROW (8thmistake and it was only 8am), drove back to the school to drop Boo off for 8:30 where I had a talk with her aide about her not eating.

She immediately got the head of the program and they figure out that Boo was taken out of the classroom for OT at 11am which is WHEN THEY FEED THE CHILDREN!!!! When she returned at 11:30 and because the teachers/aides do lunches in shifts no teacher realized that she hadn’t been fed!

They, of course, were completely apologetic and were very heartfelt on how guilty they felt that she hadn’t eaten. They said she was a little fussy at one point but I had told them she was tired b/c of the weekend so they chalked it up to that. They said they would make sure this type of thing never happened again.

 

My 9th mistake was telling Hubby as I drove to work that everything was handled b/c he exploded at me and said he wasn’t happy with this program and this type of thing keep happening and that he wasn’t going to stand for it. That there seems to be an issue with everything at this program and we never should have left Montessori.

My 10th mistake was coming to work b/c apparently I reminded my boss of a meeting for 8am this morning and it isn’t until tomorrow at 8am. He was actually on time and very upset and we have to stop ‘making these types of idiotic mistakes’.

My 11th mistake was having hubby pick up Allie from summer school at 9am because he couldn’t find her. So I got a panicked phone call from him asking for the teacher’s name, room, etc…turns out that he was in the next drop off line and not in the pick up line.
It’s days like this that makes me wonder why I work. Well, I know why…I like having a house and a car and heck the girls need clothes and Boo needs diapers and Lord knows I need a glass (or two) of wine! 
And when I get home tonight I plan on having one or two to make up for this horrific week. It is only Wednesday.YIKES!

SPAM

Yesterday was the 75th anniversary for SPAM. Allie asked if we could have a celebration because she loves SPAM. This is the meal of choice when I am not home. My husband makes Allie & Boo SPAM sandwiches, SPAM with Mac & Cheese, SPAM with hot dogs, SPAM with SPAM.

No offense to SPAM lovers out there. But I just do not get it. First, it smells up the house. Second it has this weird gelatin thing on top. Lastly, it looks (and smells) like cat food.

I admit to being a picky eater. Although I have grown in the years to like a variety of foods, as a child I was impossible to feed. My husband thinks I still am! Becuase of this, I was determined to expose Allie to a variety of foods. And failed. She will eat chicken in a nugget form, but heaven help me if I roast a bird and expect her to eat it.

Boo was more difficult as she had feeding issues, allergies and the list goes on. I always tried: avacado, meats, stews. Her feeding therapist was adamant that we explode her palate with flavorful foods so that the food would ‘wake up’ her mouth. Now that we have worked out her allergies and given her solid food and graduated feeding therapy I thought we were in the clear. That I would have a child who ATE and ate well.  But again, she will only eat chicken in a nugget form!

Yet they both love SPAM. I guess in a way that it is a nice bond they have with Daddy.

But my snarky side thinks that anything odd about the girls is from their daddy and not my fault! 🙂

Summer school

Today was Boo’s first day in the summer program. She is in a half-day integrated preschool followed by a half-day of one-on-one special needs learning. I was really nervous dropping her off because she has been out of school on a 3-week break. Usually we have regression issues as she forgets what she is supposed to do in the program.

I thought for sure there would be an issue with drop-off as for the summer program each teacher works 2-days a week. The teacher today was not Boo’s normal teacher, nor was she in the same classroom that she is acclimated.

It was complete chaos when I dropped Boo off. First there was about 25 children just running around. The teacher could not tell who was coming and who was going. I bring Boo into the room in her stroller as she cannot walk long distances. Thank goodness! She would have been lost in the mix.

And then the teacher told me that she Boo not supposed to be there. There was some mix-up and she thought Boo was only there two days a week, today not being one of them. Hello? We had how many meetings about this program!

Thankfully Boo’s aide (the one the school didn’t think she needed) was present and stepped right in. She explained that she had been assigned to Boo for the day in both programs. She unbuckled Boo from her stroller and off they went to the stair climber.

So while I had anxiety about drop-off, apparently Boo did not!

Boo doesn’t really like OT

Boo is not a fan of occupational therapy. She doesn’t mind speech therapy, loves pool therapy and physical therapy. She would be happy either in the gym or in the pool. When the occupational therapist comes to get her for therapy she runs the other way.
Allie, on the other hand, LOVES occupational therapy. And she doesn’t need it.  She keeps telling Boo that OT is so much fun, just look at what you can do:
Boo would much rather hide in the tunnel:

But this being summer vacation, Allie has to attend Boo’s therapy appointments. Yesterday was a LONG day. She had SPT and OT back to back. Since Boo would much rather do pool or physical therapy, Allie’s attendance was a HUGE advantage. After a half hour coaxing, Allie got Boo into the ball pit!!!

Thanks, Allie! It has actually taken months, not a half hour to get your sister into the dreaded pit. With your help she did it!!