Workshop blues

This morning I had a workshop day at Boo's school. I had no idea what to expect. In all honesty I almost skipped because I had a meeting at work that was impossible to reschedule. I thought it was going to be like Open House at Allie's school where some one might notice a parent wasn't there but would understand that hey people work.

Then guilt crept in so I planned on being late and getting the kick at work. But thankfully my boss had an emergency and he rescheduled the meeting. Bonus he didn't realize I didn't make it in until after noon :)

I dropped Boo off at her morning program and killed time reading the JD Robb book while I waited for the workshop to start. (Hey I will take my 1/2 hours when and where I can).

What I didn't realize is that I would have to walk past Boo's class on the way in. Where I saw "normal" 3-4YO playing appropriately. Where I saw the teachers not letting Boo progress up the hall to meet me because she refused to say "Come On" as they commanded her to do. I totally get that she has to be obidient. But really, keeping her in the hallway for 45 minutes just because she wouldn't say a phrase on command.  I understand they are trying to curb her stubborness. But I was thinking to myself let's not turn her into a trained monkey!

(photo credit: google images/trained monkey)

I also did not realize that she would be attending the workshop with me. That I would be the only parent there, in the room with four of her aides and the leader of the SPED/ABA program. Basically a bird's eye view of what they do with Boo when she is not in the integrated preschool.  They went through all of her discrete trials with her and I was able to see why she is so exhausted at night.

They have more patience than I do. If I asked Boo to touch her head and she refused, I would move on. But they do not. They hand-over-hand the request and then ask again. She had to do it 5 times before she was allowed to get out of the chair.

Here's the thing....she didn't fuss. She didn't bang her head. She didn't cry. She did 'fade' out where you could tell she went some where else for a time. But eventually she "performed" how they expected her to. It took almost a half hour, but she did touch her head five times.

Part of me wonders if I can send the crazy puppy in for training. The other part of me wonders how I can possibly replicate this at home. I cannot wait 45 minutes for her to say hello to some one. I do not place a high importance on her touching her head just because I asked.  I'm happy if I ask her where her belly is and she points to it.

I question if demanding she follow commands is as important as teaching her how to color. I mean really, how many 3YO follow commands?

I do see the benefit of the program. I have definitely seen improvement in Boo's receptive language. Her speech has come so far and I give this new program the credit.

I just wish I had their patience!

Trying to be teacher's favorite...NOT

I know. I am supposed to want Boo's teachers and classmates to treat her just like everyone else in the class.

Husband says that it is a good thing they are not excluding Boo. Me? I would (guiltily) like it if they would. I mean really after working all day and doing the after-hours therapy with Boo, cooking etc...should I really have to do homework? They know Boo cannot possibly do it!

Last week Boo was sent home with the letter bag. She was supposed to go around the house and find four things that started with the letter "A". Come on people, how was she supposed to do that? So Allie had extra homework that night and had to help Boo find things that started with "A". Here is what she put in the bag:

• Picture of Allie
• A from the alphabet puzzle
• Apple (totally blowing the whole no food from home during class in the classroom policy)
• Acorn

Then this week, what comes home? The SHARE bag (what we old folks used to call Show & Tell). Boo was supposed to bring in something she wanted to share. Really? Hey Boo what to do you want to share? Again, come on people! 

So mom of the year that I am....I found two of the most obnoxious things that Boo likes. Bubbles and a Car that you shake and then it vrooms around the room saying Thanks Homeboy from Cars2.   

Boo loves the car. She cannot work it, but she can shout SHAKE at the top of her lungs until you make it work. 

Being the fair, mother of the year that I am striving for I held up both for Boo to choose. She chose the car. Yes, I am laughing out loud picturing the teacher with 12 boys in her class wanting to shake the car and Boo yelling them on. 

I thought for SURE they wouldn't send home another bag. But nope! Last night it was a letter bag for "B". I'm sending in the bubbles....

 

Just wait until the  "W" bag comes home :)

Keeping peace with the in laws

I am sure it happens in other families. But my mother-in-law and mother have a frequent, shall we say, disagreement on who my children take after. Allie is definitely her father's child. In looks and temperment. She has my blue eyes but that could also be a genetic gift from her paternal grandfather. But you look at Allie and just know she is her daddy's girl.

And when it comes to attitude and sense of humor? They are carbon copies!

.



When it comes to Boo, that is when the, shall we say, discussion gets heated between the two grandmothers. But an aunt recently sent me a photo that should dispel any further call to arms:

 



Me circa 1970-something

 

I think it is safe to say that my mom one this particular battle in the war of the in-laws!

Monday Confessions

 

I am addicted to The Real Housewives and am sadly distressed that the RHONJ finale was last night.

 

I look forward to 8pm when the girls are in bed and I can relax with a chilled glass of wine.

 

I dream of running away to a tropical island. By myself. WIth a cabana boy named Marco whose only job is to bring me tropical drinks.

 

 I think popcorn and M&M's should be considered a healthy dinner alternative.

 

 I love that my nephews text me (and not their uncle) during hockey season

 

I think people who iron their clothes have way too much time on their hands.

 

I won't read 50 Shades of Grey because my mother did and she told me how hot it made her.

I was relieved to go to work this morning. I do not know how stay-at-home moms do it. There must be wine involved.


Phew, got that off my chest. I can go to work now :)

 

Yup, we are a supportive family

The other day Boo came home with some art work she had done that day. Allie took one look at it and proclaimed, Mom I don't want to break your heart but there is no way Boo did this!

 Allie looked it over and over and has decided that Boo did 'help' by putting the purple scribbles on the picture. But thinks Boo might have stolen another child's work.

I asked how she can be so sure, and Allie replied, She does it to my artwork all the time!

If only

Yesterday Boo came home from school with a form for me to complete for OT. It says it is to "have my input" as they develop new treatment plans. I know that it will eventually be on some IEP reevaluation form in the next meeting. So I had to answer the questions in a mature matter. 

However, if I could have answered honestly....

• What are some of your child's favorite activities? Least favorite?
• Well, she has been in school for about a year now, don't you think you should know what she likes to do in therapy?
• Does your child participate in after school programs?
• Yes, after school Boo participates in 2 hours of secondary therapy at our local Pedi center. Does that count as an activity?
• What is your child's normal morning routines?
• Well, Boo usually has a hazmat that I have to clean up. Then Boo throws her breakfast on the floor and  laughs at me while I try to clean it up before the puppy gets to it. Then she screams and hits as I do her hair. But she loves brushing her teeth and gets upset when it is over. Then I move my kitchen chairs back into the kitchen and her bed back into her bedroom because as I am getting Allie ready for school Boo has redecorated. We then rush out the door 5 minutes late for school because the puppy gets into something.
• What are some of your child's strengths and weaknesses?
• Strength--her right throwing arm
• Strength--moving furniture 
• Weakness--Falling down stairs, but she gets that from me
• Does your child use a tablet?
• Hell, no. I cannot afford an IPAD!
• What motivates your child to learn? 
• I have no idea, it changes on a daily basis
• What is something you would like your child to do at school this year?
• To keep her left shoe on

  

Exactly when did I get my medical degree?

I consider Boo lucky, because she only has to go to the variety of specialists every six-months or so. The problem with that is for some reason the doctors only see patients in clinic one day a week. Hardly any of them are on the same day!

Because we have to travel over 2 hours (if there is no traffic) for Boo's speciality appointments, I try to bundle the appointments together. As I scheduled one appointment for GI I asked if she could see Dr. R at the same time. Dr. R is Boo's specialist for her laryngomalacia. For the uninitiated, this is a congentital abnormality where your throat muscles are "soft". If your child has ever had a stridor that is what Boo sounds like when she is excited or breathing heavy. She used to aspirate her liquids so we had to make everything the consistency of a thick shake. Over time we gradually trained her throat to take thinner liquids.

Since I know that Dr. R sees patients in clinic the same day as the GI and Pulmonary doctor I tried my best to coordinate the appointments (another aside--shouldn't there be some one who works at the hospital that can do this?)

Okay, that was a long aside :) Anway to continue.....

I get an e-mail a couple of hours later:

I spoke with ZZZ, Dr. R’s physician assistant and she said that on Boo's last visit she was taking all consistencies of liquids without problems, so he does not necessarily need to see her back unless you have concerns.

If you do have concerns, please let me know and I will have Dr. R's new administrative assistant contact you to set up a follow up appointment.

 

Hello? yes she is taking thin liquids, but she still has that pesky congential abnormality. Rember, the one that they told us would 'outgrow' but hasn't. Don't you think some one should be interested in follow-up?

 

We had a similar experience with Boo's new rheumatologist last winter, that sure Boo was turning blue for no apparent reason. But we only had to come back if we were concerned.

 

Again...isn't anyone concerned that this child turns blue when chilled? Since, we have a standing yearly appointment and I e-mail them frequently with updates. And now it is fall and guess what? Blue hands and toes this morning!

I  know I have to be Boo's advocate, but this is getting a tad ridiculous. I didn't realize I had to be her MD as well.

 

 

 

Seven Snippets

--- 1 ---

I think that I have to admit that I still haven't started training for the 5K. But I hope to by next week. I think I might have enough time, barely, not to embarrass myself.

--- 2 ---

I think I might have been hit on the head, but I am allowing Allie to have a friend over after school. They are taking the bus home together. Usually I try to discourage 'playdates' something about having other kids in the house and knowing I am supposed to be the calm/rational adult. Add in the crazy puppy and Boo. YIKES. And of course, my husband mysteriously took an overtime shift. Funny how that happens.

--- 3 ---

I think Allie has finally come to terms that her mother is not crafty. She had a project for school, decorating a vacation bag, and asked if we could just skip mom trying to help her and call Auntie K. Now, this is something I totally could have helped with, but I don't want to start a precendent.

--- 4 ---

I think Boo is spending too much time with crazy puppy. Not only is her hair and his fur the EXACT same color, she now keeps sticking out her tongue and panting.

--- 5 ---

I think if Tia lived closer we would be a lot less stressed. But our husbands would probably miss us!

--- 6 ---

I think that Boo's new special-ed program is the best thing that could ever happen to her. She has made so many advances this summer it is amazing. But it was also easier when I didn't have to look around the house for where she put my kitchen chairs.

--- 7 ---

I think that the weekend is here. I don't know what Allie is more excited for: her playdate, apple picking or the fact that she doesn't have any math homework!

For more Seven Snippets, visit Bringing the Sunshine!

I wonder

I sometimes wonder if by not having a diagnosis for Boo-itis our lives are easier than others. This past weekend when we had our semi-family reunion a cousin was telling me the story of a co-worker whose twins had a horrible syndrome. The daughter had already gone home to Heaven at only 3 years of age and the son was likely to go home by age 6. The parents had lived with the knowledge that their twins would most likely not survive long in this world and felt blessed by the short time they had. L asked me if the doctors have any idea what is wrong with Boo (in a nice way where you didn't want to slap the person). I explained that the doctors say Boo is an enigma, that she just doesn't add up to what science knows to be true. But that, finally, I am okay with the not knowing if Boo has X syndrome or Y whatever. Because at the end of the day, no child comes with a user's manual.

Visiting the hospital with Boo I constantly think to myself, there by the Grace of God do I not have to travel that road. I have an acquaintance I met in the waiting room of Boo's therapies. She knew from ultrasound and lab testing that her child would be "special". She believes that because she and her husband were able to prepare for a life with a disabled child, she had it easier than us. We had no idea that Boo would have to be such a fighter, nor that we would learn that being a parent also means being an advocate.

Boo's difficulties (to my mind) are manageable. She is happy and relatively pain-free. Boo is growing, taking her time about it, but growing. She hasn't been hospitalized (almost) a year. Boo is learning, again at her own pace. Boo is just Boo.

By the doctors not being able to tell us what to expect, we can expect the world for Boo. At her last neurology appointment they told us she would be eventually labled intellectually disabled, no known cause. However they cautioned us to live life as we have. To continue to push Boo to her potential (just as we do Allie) and to continue to harrass her medical specialists to provide the best care possible. The neurologist (who has had Boo since the NICU) admitted at this appointment that she never thought Boo would walk or talk. That looking at the child she was in her first year, they never expected her to make the gains she has. But they were determined not to undermine our desire to acquire all the therapies possible.

So even the doctors expect the world for Boo.

Sure I continue to wonder why and stay up at night wondering what could have prevented her having such a hard road to travel. And I will continue to Google and generally harass Boo's physicians and therapists for answers. I do wonder if finally getting a diagnosis will help Boo or hinder her progress.

We are undiagnosed, and still okay with that. But that doesn't mean we stop looking for answers.

This is what happens when you take the morning off for yourself!

I am not a pretty runner. Nor am I fast. I look like one of those cartoon figures huffing and puffing. I haven't run in about a year. Last year I ran for stress, and to make sure I didn't kick the neurosurgeon! I did a 5k and that was it.

This year I haven't run at all. And my thighs are showing it. So I figured if I had a goal that would get my butt out of bed in the morning. I downloaded the 1/2 marathon training schedule and today I set out on the first step.

And failed miserably. In my defense, I also had a dentist appointment and ran afterwards. With a mouth full of Novocaine. I chose a popular bike path because I am competitive and figured if there was some one watching me I wouldn't walk the 3miles. I didn't count on the heat and humidity of mid-morning or the fact that after having 2 cavities filled my face would be so numb that I would not be able to swallow the drool running down my face.

It wasn't pretty. At mile 1.5 I slowed down and took a sip of water. Which in my numbed state poured down the front of my shirt. At mile 2 I started walking. At mile 2.25 I got embarrassed because a teeny bopper with a blonde pony tail lapped me. She looked like an advertisement for hot pink spandex.

I slowed down to a crawl at mile 2.75 and walked the rest of the way. Face numb and lungs burning. Maybe a 1/2 marathon was too ambitious.

I know what you would say: Ya think? So I texted the always reliable Tia that maybe training for a 5k was a more reasonable goal. Always the supportive one, she didn't say YES YOU IDIOT. She is so kind, she said not to give up and a 5k was a great goal.

The day got so much better (insert sarcastic voice here). To reward myself I went to the supermarket to get some sushi (I know what you are thinking, sushi from a supermarket GROSS but the one by me does a fab job). I passed the nachos and thought my husband would like those. Reached up to the top shelf to get the Queso sauce and BAM!

Two glass jars of Tostidos Cheese Queso sauce fall onto my head and then onto the floor. On the upside they did not break until crashing to the floor. On the downside, my friend's teenage daughter had to clean up the mess. I don't think I can ask her to babysit again for quite some time.

I really should have just gone into work after the dentist rather than taking the day to myself.

Who needs couple time?

It's been a while since my husband & I have gone out alone together. We have this great Irish pub we love. Since I was dying for a hamburger I convinced my husband to ask his mom to babysit so we could go out to dinner. Alone. Just the two of us.

Well we are really not go at doing that! At Boo's therapy he mentions to her OT that we are going to this Pub. She loves that place, so next thing we know.....

Sitting at the bar and Boo's therapist walks in. Not just one of them either...five of them! We had a great time. It was cool because we didn't focus on Boo (other than how cute she is). We talked about their lives, what was going on in one of the other therapists lives, their crazy parents, everything under the sun.

I always joke that since Boo has been going to this center since she was 3m old, we are no longer patients but family.

Last night proved it :)

In thanks

Today is Sept.11th. (yup, I know you know!)  Married to a firefighter, I sometimes think 9/11 means something different to me than others. Kind of like being a parent evolves once you realize your child is special.

I always took what my husband did for work lightly. I mean, yes he is a firefighter but it was a remote thing to me. Kind of like my job, he has no idea what I do at the office all day. It doesn't mean we do not respect one what the other one does. It is just a given. 

I go to my job, he to his. He used to tell a story that until you were a firefighter you had NO idea what they did. He was right.

We had been dating for over 5 years when 9/11 happened, engaged for almost a year. In our time together he had been electrocuted in a fire (he smelt burnt for about a week--not a pleasant smell), been dropped 2 stories in a training drill, been caught in a backdraft and had thrown out his back when he was lifting a drunk on a stretcher and the drunk started flailing. 

In all the years we have been together, he had mishaps but nothing serious. I know what you are thinking...electrocution, not serious? Well it wasn't like he was admitted to the hospital or anything. He had an 'incident' at work, went to the ER and came home. If I remember correctly, he waited until the rescue brought some one else into the ER and then had them drive him home on the way back to the station. He didn't even tell me about it. A friend called me at work, told me he was sent to the ER. I went home to put the dog out (not crazy puppy--before his time) and there he was on the couch. 

So until 9/11 I knew that my future husband was a firefighter but I never worried about it. It was just where he went to work.

I am sure I am not the only one who remembers exactly where I was when the Tower was hit. I was at a meeting and the waitress came running over to tell us to come to the TV. The meeting ended and we went back to the office (where coincidentally we had just gotten cable TV for the waiting room) where we watched the 2nd Tower hit.

My future husband called me to say he was on the short list to go to Boston if it was hit. As a member of the confined space team he would be one of the first deployed. My future brother-in-law is on FEMA, he was sent immediately to NYC to begin search and rescue. 

My future husband wasn't allowed to leave the station for 3 days as we all waited for the next calamity. Thankfully that didn't happen.

But I will never forget sitting at home, watching the coverage, seeing the men and women walk into a building to save others. Or watching them run into the building as it fell to save their brethren. 

This morning as I was in the shower getting ready for the day my husband called in that he was leaving for a structure fire. The girls and I went on with our morning, getting ready for school and work. Just as we were leaving he came home safe and sound.

Few of us can imagine having the courage that these brave men and women had. But my husband does. Thanks to my husband and those like him how risk their lives so we don't have to!

 

Oh my aching back

There is nothing like a weekend stuck inside due to crap weather to get you over a pity party. (And I fully admit that last week's post was a pity party of epic proportions)

With the cold, damp weather the girls, crazy pup and I were basically stuck inside. Husband, of course (!) was on duty so I had to get creative. We made brownies, played bubbles and walked the carriage. Boo kept throwing the baby on the floor!

 Then the girls and pup decided to play hop on mom. Well, that quickly got out of control. So when the energy just got too pent up....couch volleyball was created.

(note to self, take socks off before diving for the ball on the hardwood floor).

 While Allie and I were competing in the couch volleyball Olympics, Boo was moving all of my kitchen chairs into her room (I guess she got bored of pushing the empty carriage).

Crazy pup hid under the table. Thank goodness they go back to school this morning. Last night to relieve my aching back, I did some aerobics. I put the directions below if anyone else would like to try!

 

 

Am I on the only one.....

Am I the only one perturbed by the underwhelming coverage of the 2012 Paralympics? Not only did our athletes not receive the daily medal accolades on the evening news, the closing ceremony wasn't even presented on the prime time networks!

For the US Team, 20 of the athletes were veterans. Some of them wounded in Iraq & Afghanistan! Like this great man, Navy Lt. Brad Snyder. Lt. Snyder lost his sight when he stepped on an improvised explosive device while on duty in Afghanistan. One YEAR ago. Last week he won a second gold medal at the London 2012 Paralympic Games. Click "like" to thank him for his service with the Navy and cheer him on with his new Team USA. His story with videos: http://ow.ly/dxUf6

Lt. Snyder (taken from US ParaOlympics Facebook page)

Personally, I think his military record is more impressive. And further, I believe his Olympic record is more impressive than any able-bodied Olympian. Not to take anything away from Keri Walsh & Misty May, but these game have something called murder ball. In this game they have technicians to re-weld the athletes wheelchairs!

Murder ball

 The great news is, that although the Games did not get a lot of play in the US media, they did break all the records. Over $70 MILLION in ticket sales with over 2.7 attendees. Including the Royal Family. Read more about the games here: CBS Coverage

I want to say THANK YOU to all of our Olympians for doing their respective countries proud. You are the true champions!

 

I became an idiot

This past week was wonderful. We had a house full of company for the long weekend, Allie is exhausted from all of kids. She (and Boo) had a great time playing with their cousins, the ones that are their ages and the ones that just act like it.

It was a hard weekend for me and not just because I did 15 loads of towels! I know Boo is delayed, that she will most probably be labeled "intellectually disabled" within the next couple of years. She has made such gains this summer in the new special-ed program and I am so proud of her.

This weekend I was taken by surprise to see just how far behind she remains. As Allie and her cousins ran around the yard, played on the bounce house, climbed all over the playground Boo tried to keep up. She really did. She was so excited and squealing. But every time she got close...ZOOM they were off in another direction.

It was great for Allie. She got to play with kids who could keep up. She ran around the amusement park with her Uncle and got to go on all the rides (poor husband was working!). Boo was content to sit in the stroller and watch them have fun.

Boo was fine. Allie was fine. I was guilty. Because instead of seeing all the gains Boo has made, I saw her flaws.

I saw Boo not catching up.

I saw people not understanding Boo's efforts when she tried to communicate.

I saw Boo not being able to jump on the bounce house.

I saw Boo getting overwhelmed when we went to the playground that had sand surrounding the play structure.

I saw Boo not  being able to do things a typical 3YO can do. Things that her cousin (who is 3m younger) did without any difficulty at all.

Although, Boo was MUCH better behaved in the restaurant :)

I feel horrible.  I feel guilty. I feel like I let Boo down.

I admit to having high expectations for Boo. When they said she wouldn't walk, I got her more therapy and a pediatric walker. A year later she walked. I have always set reasonable (in my mind) goals for Boo and never felt that as a mom I was short changed.

I have never looked at another child and was envious. I have felt that it wasn't fair that Boo had to work so hard. That I would look at other parents and cringe when I heard them complain about their toddler getting into things. I would think to myself, if only!

But until this weekend I never looked at the other children and held Boo up to their level of development.

I have always looked at Boo and been proud. Sure I've been embarrassed (like that time in Church) when she acts up in public. But I've always been able to rationalize that those staring didn't know Boo and could kiss my right cheek.

But this weekend, I was one of those idiots who judge my daughter.

WOO HOO

It's the first day of school, it's the first day of school, it is the first day of school! This is how I woke Allie this morning. Singing and dancing.

It is amazing, all summer she and Boo have been up at freaking 6:45 in the morning. Today, first day of school? I had to wake Allie up at 7:30!!!!!

But I don't care, because it is the first day of school!!!! WOO HOOOOOOOOO :)

Boo's left foot

Boo has an issue with her left foot. I am not sure what the issue is, but Boo really (and I mean REALLY) does not like socks or shoes on her left foot. She will walk around all day with the right shoe/sock on. But her left? Oh no, she does not like that at all. 

We do manage to get the shoe on in the morning, but left unattended and she has that shoe off faster than a prom dress on prom night.

She is no longer allowed to wear shoes in the Jeep, since her last left shoe ended up somewhere on the highway.

Yesterday afternoon as we sat around the fire pit, enjoying the peace and quiet of the day I heard my mom yell BOO NO!!!!! I jumped up and in slow motion watched her left sneaker plop right into the middle of the pit. 

You never realize what a fire hazard those light up sneakers are. I apologize to our neighbors who saw (and smelt) the black plume as it rose above our yard.

I will be investing in sneakers AGAIN. If only I could buy the left ones :)