An innocent woman walks into a PTA meeting...

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.

On Display

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.

PECS, days 1&2 updates

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 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?

PECS

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?

Boo made a friend!

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!

What I wish I could say....

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.

The perfect day

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.

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 :)

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 (8^th mistake 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 9^th 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 10^th 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 11^th 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!!

Poor, poor, poor crazy puppy

Yesterday I just wasn't quick enough. I had given Boo her morning medications and everything was fine. Until the Ex-Lax. Just as I turned away she took it out of her mouth and POOF it was in the puppy's.

This was just as we were walking out the door for a 3 hour therapy session. I locked the puppy in the breeze way and hoped for the best.

After therapy I returned home and realized hoping for the best just wasn't good enough.

Lesson learned: never, ever, ever walk away from Boo after giving her medication!

Trying not to compare and failing miserably

I really TRY no t to compare Boo to other children. I just don't often succeed. Take last yesterday. While other children (including Allie) were enjoying the fire department muster, Boo was to overwhelmed to participate. I tried to take her off to the side to play in the foam, but she could not over come her fears. Too many people, too much foam, too much noise. I don't know which of these factors were too much for Boo, because she cannot tell me.

It is so difficult not to think, look at those little ones rolling in the field. They are having so much fun. Watching the utter joy on the other children's faces as they played with the water and foam I had to continually remind myself of Boo's progress this year. At least this year, she watched from afar. She kept calling for Allie to come out of the fun, certain she was in danger. But she wasn't crying or clinging to my arms. She just wanted to watch and laugh from a safe distance.

It was the well-meaning family members that bothered me. Trying to force Boo into a situation she wasn't comfortable. Trying to force her to touch the foam or play in the water. They were trying, I know, to help. 

But they were not helping. 

They just think this is something Boo will outgrow. They do not understand that the hours of therapy a week are necessary. That Boo needs to explore the world at her own pace. You cannot force Boo to do anything. She has to wait and make sure it is safe (thankfully Allie is a willing guinea pig). Boo does not like for you to take her shoes off and make her walk onto the grass. That it took me a week for her to be able to wear the crocs in the first place, so please do not remove them!

They do not truly understand that the doctors, surgeries, procedures, therapies are essential for Boo's life. And that they are probably unending. A friend actually said to me that Boo was a typical 3YO, why is she in so much therapy. Then I pointed to the actual 3YOs that were playing with the firemen in the muster.  The ones who were playing on the playground unassisted, going to the ice cream truck and eating without a problem. If Boo wasn't in so much therapy she wouldn't be rolling over let alone walking.

I understand that all children reach milestones at different times. I just wish well-meaning friends and family would begin to understand that Boo's milestones may be in the distant future. They should rejoice in where she is, not where she should be.

And so should I.

Happy 4th of July!

Independence Day

Tomorrow, July 4^th, we celebrate our Nation’s Independence. The preparations got me thinking of how, as parents, we provide the tools for our children’s independence. Even though it breaks our hearts, a little, every moment we are preparing them for growth.

Allie is already an independent 8 year-old, going on 45. Preparing her to be independent means giving her the confidence to know she can do anything she sets her mind but nurturing the desire to include others on her journey.  

Naturally, I wonder about Boo’s Independence Day. Will she ever have one? I know she is only 3! But I am a worrier and a planner. I want to know today what I am doing tomorrow. This is where Boo’s needs fit perfectly with my own. I need to plan and she needs a plan for every day!

One of the difficulties I face with Boo being undiagnosed is I do not know what her future holds. I do know that all children’s futures are uncertain. While I can imagine Allie being a wonderful dictator to a small Caribbean nation (hey, I want to retire to a beach and she loves ordering Boo around!), she may just run a household. And that’s okay.  And it is okay that I will always worry that Allie is living a fulfilled life. That’s the definition of MOM, or it should be!

Boo is another worry. I just don’t know what her expectations should be. Should I expect her to be reaching for the stars or just concentrate on her teaching her to hold our hand? A year ago, Boo was using a pediatric walker. Today she is walking independently. This is where I have to stop and acknowledge her success. She may never reach total independence. But she will have moments of independence that I should remember to celebrate in small ways. 

I have begun to set short-term goals, rather than long-term expectations.   

Tomorrow, while I am attending the parades and fire department musters and watching the celebration of our Nation’s Independence Day, I will also remember to celebrate Boo’s accomplishments. In just a year she has become independent in:

·         Walking  

·         Climbing on-top of my kitchen table

·         Signing “I want” and following up with verbalizing “cracker” (or her version of the word)

·         Getting herself into and out of her toddler bed

·         Opening her bedroom door

·         Drinking from an open cup

Happy Independence Day, Boo! I cannot wait to see what the next year brings.

Crafty, I am not. Thankfully my sister-in-law and brother-in-law are. I saw this post on a redneck waterbed on another blog (find it here http://playathomemom3.blogspot.com/2012/02/redneck-waterbed.html ) and thought it was a fabulous idea for Boo. I figured we could use it as a balance / sensory mat.

Except, I am seriously impaired in the craft department! I am so seriously impaired that Allie will not even let me help her with school projects. She calls Auntie for that. So when I saw this online and realized how we could adapt it for Boo, I immediately sent the link to Auntie.

Auntie did even more research and found that it could be adapted with bath toys (http://playathomemom3.blogspot.com/2012/04/i-spy-redneck-waterbed.html) making it even more fun!

Yesterday in the 90-degree weather she and Uncle came over with the mat. As it was filling we found that the edges will seep, so they recommend if anyone wants to try this at home, to fold over the corners a couple of times when taping. They also used Gorilla Duct tape.  

It took Boo a bit to get onto the mat. But once Allie coaxed her on it, she had a fab time!

She loved laying on it and finding her bath toys. They moved around a lot so it kept her crawling around the mat. Also, thanks to the Gorilla tape, the mat held her and Allie rolling around on it. Even better, when I woke this morning the water hadn't leaked out at all over night.

Special thanks to Auntie & Uncle who made this happen!