June | 2013 | Lessons from my daughter

School is over for the summer!

Earlier this week, Emily turned 15…

Up until Emily was 12, she was allowed to regular daycare for after school program and for summer program…

The summer she was 12, we had her registered at the YMCA in their summer program. The program had weekly themes and sounded really promising. I had a good conversation with the lady in charge and explained Emily’s syndrome, what she could and couldn’t do. The program was organized and managed by University students. I thought it would be a great opportunity for Emily to be exposed to other kids her age, to go swimming all summer and participate in some pretty cool activities. In my naive mind, I figured that those university students would see a great opportunity to learn something new, to discover an amazing girl who has an extremely rare and severe diagnosis but who is loving, funny and doing really well….

Was I ever disappointed…. disillusioned…. pissed off even!!! They didn’t really neglected her but they neglected her. They didn’t care about her and never made a real effort to help her be part of the group.

I had told them that she still had issues with remembering to go to the bathroom so I asked them to send her before activities…. well that didn’t happened! I would pick her up and she was soiled! WTF!!! How hard is it to remind a 12 year old to use the washroom when you know they are struggling with that particular task….? Apparently really difficult.

I had a chat with all involved and told them to put themselves in her shoes, how would she ever make friends and be part of the group if they didn’t help her….?

All I got were blank looks!!!! Deer in the headlights look???

So we got her a watch, made the alarm go off once per hour and reminded Emily every morning that when the alarm went she needed to go to the bathroom.

I would pick her up at the end of the day and she was on her own at a table with a game or a book while the other kids were sitting in another corner… with those lovely university who were in charge!

Hurtful! For me anyway! They didn’t care! Is it neglect? It depends who you ask.

Those guys missed an opportunity to learn from Emily, to teach themselves and the other kids how to include and integrate a child who is different into their world… They will be faced with this challenge again in their life but they will most likely keep failing at it until they start caring…

By now, you are wondering why she kept going? Well that’s easy…. not many places will take a 12 year old who is challenged physically and mentally. The YMCA had (still has with most people) a great reputation…

It gets better, I haven’t told you about swimming yet… She had to change on her own which I can appreciate, so we practiced, I helped her the best I could and although I knew they wouldn’t be there when she changed, I was expecting that should she decide to get dress over her wet swimsuit they would noticed!!! I picked her up one day and she was soaked, I asked her what happened, than I noticed the swimsuit straps on her shoulders. I took her to the “responsible” person on site at the moment… The guy told me nobody noticed…. How could they not noticed??? She was soaked!!!

Neglect?

I continued to modify how I packed Emily’s snacks, lunch, shoes, hat, swimsuit gear, sun lotion, watch, extra clothes…..

I was so happy when the summer was over and school started again! When we talked about it, Emily was also really happy that the YMCA summer program was over. She wanted to stop during the summer, I wanted her to stop going there as well as it was nothing like what it should have been or could have been but we were stuck….

Back to school brought another set of challenges…. We didn’t have a daycare anymore, the nice one she was at before closed… We decided that I would get up super early, start work at 6:00am and go get Emily at the end of her school day. That meant I was going to bed really early and my lovely husband was on it’s own in the morning to get Emily ready for school. After school, I was on my own until 9 or 10pm when he was done work…

We didn’t see each other much but Emily was safe, we knew she was ok as she was with us.

The following summer she was 13, at 13, she was too old for summer program and daycares so hubby and I had to have a serious conversations about what we would do… We made all the appropriate calculation and agreed that he would move from full-time employment to part-time so he could be home during the day and I would be home mid-afternoon as I would continue to get to work at 6:00am…

I was looking forward to sleeping-in from time to time… even though that meant getting up at 8am.

Last spring, hubby found a new job, an overnight job!!! Midnight to 7 am!!! That sounds really bad …. right? Not for us!!!

With hubby’s new schedule, I get to sleep until 7:00 am, start work at 8:30am and Emily could stay home during the day for the summer. She was 14! She was ready to be on her own with daddy sleeping in our bedroom.

Considering we got rid of our home phone line a couple of years before, we ended-up buying Emily her own iphone to match ours. We programmed our numbers in it and got her set-up for text and phone. We told her what she could and couldn’t do. What was ok and what wasn’t…. I programmed it with daily tasks and reminders… Bathroom reminders, snacks, lunch, clean-up, wake-up daddy, …. and more

Within a week or so, she stopped waking up daddy but did great with the other reminders. She was calling me at work a lot and we got that under control within a couple of weeks where she finally understood that she could call if she wasn’t sure what to do, if she was facing a challenge or a difficult situation.

We had a lunch date once a week, I would come get her (so she had to get dress that day) and we would go out. I wanted to just drop her off at home after so we got her a house key…

She started to carry a purse for her phone, her key and her wallet… The summer was great, Emily learned new responsibilities… She can even text a little. Some short words and some emoticons!!!

What a difference between that summer and the not so great summer at the YMCA.

So this summer, we are starting her on the summer at home program once again! She will go to tutoring twice a week, on Tuesdays and Wednesdays from 9am to 1pm. There, she will continue to work on her math and on her reading.

She will continue therapeutic horseback riding once a week.

http://cavalierridingclub.weebly.com/

She will also start baseball with the Hub City Brewers – Field of Dreams next week. It’s her 3rd summer, once a week, she plays baseball with friends!!!

http://www.hubcitybrewers.com/field/

What are your kids doing this summer? How much changes would you be willing to apply to your current way of living to make sure they are safe and sound? Would you wake-up super early or work over night? Would you take a cut in income by working part-time? Would you cut the time you spend with your spouse? What would you be willing to do?

Yesterday was Emily’s 15th Birthday!

Over the years, we’ve had family birthday parties, fishing party (4th) Family dinner (5th) … Party with tons of friends for her 6th and 7th. Party with some kids from school, bowling party, bouncy castle party…. We kept inviting kids who didn’t call to confirm and some who confirmed and didn’t show up. Emily disappointed with how many of her “friends” didn’t show-up…. Me wanting to smack some senses into little brats who showed-up only to be with their friends who were coming than complained about the goody bags we prepared for the kids coming to Emily’s party…

So over the last 2 or 3 years, I’ve tried to convince Emily to have a family BBQ or a fancy dinner….

This year, all the money is going towards our NYC trip so it was fairly easy to convince Emily to keep it to dinner and 1 gift only!!!!

See, birthdays are difficult, not because she’s getting older which by consequence means I am getting older but because I remember my birthdays as a teenager! I remember what I did when I was 14 and what I was planning to do at 15…. This automatically takes me to what Emily hasn’t experienced yet… And might never do…. And that hurts!

I do my best every day to pick on the small positive thing and to blow it out of proportion so at the end of the day, it’s all good. The sad moments are short and the happy ones are big …. but once in awhile it hits me.

Yesterday was one of those days…

When I was 15, my mom couldn’t get me out of bed in the morning. Yesterday, around 3am, Emily was wide awake and she wanted to open that box in the spare room. She noticed the box months ago in my office at work and knew it was for her. She even told me not to bother wrapping it :). But at 3am… I wanted to sleep. By 5am I gave up on making her sleep again so I allowed her tv time but no gift until 7:15am when I would be awake and her dad would be home… She reminded me of a 4 or 5 yr old kid. Sometimes that’s cute. At 3am on a work day… Not so much!

She opened the box, said thank you. Opened a card from her “Mamie” (my mom) grabbed the cash, ask me to put it in her bank than moved on to breakfast.

She wanted to wear a pretty dress to school so I helped her getting ready and off to school we went.

Last night was the 8th grade patio party… She didn’t want to go. In her 3 years of middle school she went to 1 dance and decided against it… She cried so many times on dance night as she wanted to go and not to go. Those were not fun night. This year, she was really clear about not going and yesterday wasn’t even an option in her mind.

I am sad that she doesn’t feel like she belongs enough at her school to be comfortable to go to a dance but I’m more than ok that I don’t have to go to a middle school dance with her. At 14, there is no way I would have missed a dance!

So last night we went for dinner at a Japanese restaurant, we had fun and ate too much.

Emily ordered Agedashi tofu for starter and calamari on the teppenyaki grill for main course! I love this about Emily. She knows her food. I discovered different food way later than that. On that front she wins! She’s ahead of me at the same age and ahead of most kids of her age!

The restaurant we were at as great food but their desserts don’t quite make our favorite list…! So, Emily suggested we stopped by the grocery store to pick-up a cake! So we did!!!

I went to bed last night thinking about all the things I did when I was 14-15…

I am glad I don’t have to worry about Emily trying to get out of the house in the middle of the night to meet some guy we believe is too old for her… I am also quite happy with the fact that she’s not interested in alcohol, cigarettes, drugs and sex…. Not that I did all those things at her age but 15 yr old kids now are doing a lot of stuff….

I am sad that she doesn’t have a “love” interest or a crush… She’s never had a sleepover… She doesn’t get invited to birthday parties or just parties! The phone never rings for her. She doesn’t have plans for the summer… Next year, she will not be getting her learner’s permit or ask to borrow the car..

Every birthday brings me joy and sadness…. So let me ask you, birthdays…. For or against?