Education | Lessons from my daughter

Over the weekend, Emily and I visited some of my family.

Whenever we go to my mom’s place we try to go for a big breakfast before we hit the road back. We always go to the same place.

“Chez Oeufs”

Emily orders either crêpes or a waffle covered in Nutella and bananas!!! I try whatever combination of poached eggs and hollandaise sauce I can find. This time I had artichokes, spinach and asparagus in my plate!!!

I love food! Breakfast was delicious!

Whenever we go “Chez Oeufs” we always invite anyone who wants to join us. This time we were 9 and I loved it!

As per usual, at one point or another during a family meal or a family reunion the conversation will turn to Emily.

This time was no exception. My little brother’s mother in law was commenting how she took upon herself to educate some of the guests at the christening the day before about Emily’s difference.

She had noticed them looking at Emily and decided to let them know what she knew.

I had noticed them too but was busy keeping an eye on Emily in the pool or getting her food ready or helping her change after swimming and so on…

I know I should have taken time to chat with them but I’m not comfortable doing that so it was easier to stay busy…

I know, that’s a shame but I never said I was perfect!

I should be able to talk to strangers about my daughter considering I write about her right?

Wrong!!!

Back to my story…

D. is telling us how she handled the guest’s curiosity. She did really well and they all marveled at my dedication to my child…

In my mind, I’m not any different than another parent, I just have a different reality…

But apparently to witness me take care of a tired teary 15 year old Emily made me almost a Saint in their eyes… 🙂

Ok, I’ll be a saint for now… 😇

But the truth is, I have no idea how my life would be without Emily and her challenges. I have no idea how to be a mom without being crazy in love with my kid and doing everything I can for her to have a good life.

Most of the time her physical age is irrelevant…

When she was tired and everybody was loud and she didn’t want to be there anymore, she was trying to crawl in my arms to be comforted… In that moment she was closer to 3 than she was to 15 but she still measured 5’7″

My choices were limited on how to handle the situation in order for all involved to be minimally impacted.

I decided that Emily and I would go back to my mom’s place as she had been over stimulated all day. We gave hugs and kisses to all and I kept right by her, telling her softly that we were leaving, that it was ok, that it would be quiet as soon as we would get out of the house.

Emily calmed down slightly as soon as we left.

Did I miss part of the evening? Yes!

If we had stayed, would I had been able to enjoy the evening and fun company? No!

Did I enjoy leaving? Not really!

Did I enjoy seeing Emily calm down, gaining control over her overstimulated senses? Yes

Did I enjoy her climbing to bed and falling asleep without me having to drag her there and repeatedly tell her to go to sleep? Oh yes!!!

To have tried to stay would have made things worst and wasn’t worth it.

Emily has taught me to pick me battles wisely. I’m getting better at it. I sometimes still make the wrong choices but I’m not perfect!

Can you pick your battles wisely?

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?