Special needs | Lessons from my daughter

I have tried so many times to explain how Emily can switch from acting almost her age (15) to being a toddler…

Sometimes, I try to explain it to get services, other time just so the person in front of me will understand our behaviors.

I know she looks confident, she stands tall at 5’7″ and dresses well. We’ve worked for years at building her self-esteem.

We did so well in building her self-esteem that some people don’t understand why she’s holding our hands in public, why I almost always get her plate at the restaurant so I can make sure everything is cut and not too hot. Why I taste her food or her tea before I give it to her. Why we need ice to cool down her soup or a tea spoon to eat spaghetti.

Some of those actions are so natural to me that I don’t notice doing them anymore.

Sometimes I tell my husbands or colleague to watch for the uneven ground… “Watch your step”

😉

Last night around 9:30, we had some pretty bad weather. Thunder, lightning and rain showed up. Emily crawled in bed next to me and told me she was scared. We cuddled and laughed than it was mostly rain. She fell asleep in my arms.

Around 5:00 this morning we got a repeat of the thunder and lightning show but it was so much louder.

Emily woke-up startled and tried to get even closer to me. She took cuddling to a whole new level that she normally only reach when sick.

If you are a parent or have been around little kids, you have seen at some point a 3 year old, crawling up to her mom’s arms, putting her head in her mom’s neck and holding on with everything she has.

That’s how my confident teenager was this morning.

She was lying next to me, her head between my neck and breast, her right arm holding her baby, her left arm holding me and her legs and feet over my legs..

She asked me to sign “Twinkle twinkle little star”. I rubbed her back and her arms. Played in her hair. Talked to her gently. Told her she was safe in my arms, in our house… I tried to calm her down and get her back to sleep.

This episode lasted for over an hour.

When the party in the sky stopped and we were getting back to sleep, Jake (our puppy) needed to go out.

😒

I took him out than it was almost time to get up so that’s what we did!

This morning, for over an hour my baby girl was a scared toddler and although I would have preferred too sleep, I would not change how it went.

Home is a safe place where Emily can be herself, where she doesn’t have to be anything other than herself. She doesn’t have to behave this way because she is in high school or constantly be reminded that her pretends friends are not going to school with her. She doesn’t have to be strong and stand tall because I have her back, I am here for her and when she’s home, she can be herself, she can let her guards down.

Nobody is judging.

Nobody is staring.

I hope you all have a safe place like our home is to us.

Like the 3 of us are for each other… A family where we can each be ourselves.

If you ask Emily how was her first day of high school, she will answer: “Awesome!”

“Awesome” is Emily’s go to word for everything. If something is not awesome, we need to dig and ask questions. It takes something major for Emily to not have an awesome day.

If you ask me how was Emily’s first day of high school… I will tell you that Emily had an awesome day but that mine was horrible!

I sat in my car, in the parking lot a cried… I didn’t cry when she started school at 4 but yesterday I did. For the first time, I wasn’t sure she was going to be safe and it scared me so much that I can’t find words powerful enough to make you understand!

Thank god for my friend Lorraine who told me I could come over for coffee. My coffee visit lasted something like 5 hours… We all need a Lorraine in our life’s if you don’t have one, find one!!! As long as it’s not mine! 🙂

Why was my day horrible?

I wasn’t ready to leave Emily in a big new high school where nobody could tell me that she would be safe!

Was it so unrealistic of me to expect that the professional staff on site would be able to tell me how the day was going to go and put my mind at ease as to my child’s safety?

…

We had meetings with the resource staff in the spring to prepare for Emily’s transition to high school. Emily went to visit her future school on 3 or 4 occasions to help her familiarize herself with the place.

Two weeks before school started I emailed my contacts to ask what was the plan for Emily.

I didn’t get an answer.

I looked at the staff list on the school’s website, their names and emails were still there so I gave them a couple more days to get back to me.

Less than a week before school was scheduled to start, I called and learned that my main contact changed over the summer… Not ideal but I can live with that.

This is after all going to be Emily’s fifth school. We’ve done this before in 2 provinces and 4 different cities.

Entering high school can’t be that different. Can it?

I left a voicemail to this new person and emailed her my questions. Where was Emily supposed to go and who would help her during the day?

Simple enough right?

Well, my simple questions got a really simple answer. “We meet in resource room 130 before the bell.”

Well, I guess I should have been more specific… That didn’t help me much but at least we had a meeting place. All that was left to do for us was to get there and find that room.

….

The overall lack of information didn’t sit well with me so I booked the day off.

On a side note, I have never taken a day off before on Emily’s first day of school. I might have showed up to work later than usual but never missed a day. She started school when she was 4 so this is her 12th year!!!

In order to feel better, I started to look at the school’s website daily to try and find as much information as I could about Sept.3rd.

I found the bell’s schedule and a ton of info on all kind of sport’s try-out for the week before school started.

I found a program called Ambassadors for high school students to help new international students integrate and feel part of the high school community.

Nothing for the kids with special needs.

It would have been nice for something like the Ambassadors to be in place for this population of vulnerable individuals entering the school, to help them integrate and feel like they are part of the community.

I wonder if that was ever considered.

I found the first day for 9th grade only announcements. Students have to be there before the 8;40am bell and the new international students and their parents are to meet somewhere specific. Those parents are invited to spend the day. Good for them, I am sure it will help the transition for their kids but what about mine?

Still nothing…

I’m to drop her off in resource room 130!

Again I am wondering, why was there nothing in there to help the most vulnerable new students transition and integrate?

Regardless of my worries, yesterday arrived on time, just like Christmas will be here on December 25th!

Emily was standing tall and feeling confident thanks to 15 years of building her self-esteem.

I wasn’t confident at all but tried not to worry Emily.

We went in together, passed a mom and her son, she seemed as uncomfortable as I was.

We kept walking and found room 130… I admit we had to ask for help to find it but we managed.

Once there, it appeared that I was expected to leave my child and go.

How was I supposed to do that?

Think about this for a minute. Emily is a gorgeous 15 year old who mentally can be anywhere between 3 to 15 depending on the situation. Would you send your toddler in a high school to fend for herself when she looks like bait for anyone with bad intentions? She is not strong enough to physically defend herself should something happen. I don’t know if she would scream, fight back or try to run… Not that she runs really fast!

Can you see my concerns?

I know, some of you think I’m over reacting. The resource staff and educational assistant are professionals right? Yes, they are so my expectations as a mom of a new students with special needs shouldn’t be anything new to them.

Why is it that this week, they had a special meeting for international students, a corn boil planned by the student body for tonight, a dance tomorrow, pictures day on Friday, a football game Friday nigh with pep rally but nothing to help their most vulnerable students and their parents feel confident that the day would go well?

How is that ok?

I had to ask the resource teacher how they would guarantee that Emily would safely transitions from class to class and that she would be safe and sound (and still on school ground) by 3:30pm when I was to pick her up?

Some quick arrangements were made with the educational assistants… but as far as I could see not a permanent solution.

Emily took my face between her hands, look me in the eyes and said: “mom, I am fine, you can go. I love you” than she kissed me. 😦

That was her way of telling me to stop embarrassing her and leave! 🙂

I am so proud of her but I wasn’t ok to leave yet…

I left!

I got out, sat in my car and cried!

I cried in my car in the high school parking lot on the first day of 9th grade… not my first day, Emily’s first day! I had never cried in a high school parking lot before!

I was frozen in my car. At that point my plan was to stay there all day although I knew that wasn’t a good plan.

I texted my husband who was trying to sleep as he was just done work.. not my best idea!

I considered finding a place serving alcohol at 9am and just drown my worries in rum and coke

🙂

Although that could have ended-up being fun, that didn’t really work with me being available should Emily needed me…

So I texted Lorraine…

Thank god for Lorraine! She helped me by talking about tons of things and kept giving me coffee! I love her!

I talked to the resource teacher last night and we agreed on a plan for the first couple of weeks of school. The call took maybe 30 minutes and I was in a better place.

30 minutes… this call should have been before her first day, not after! What a difference that would have made!

I took Emily in this morning, we went to the resource room, than to her locker than to her homeroom. All that with her EA of course but Emily was showing me around. That was nice!

Than she kissed me goodbye and went in her class.

I went to work!

What would you have done yesterday? What should I do next?

I am thinking of joining a Parents/School committee of some sort and try to get involved at this new school.

I am also thinking that there has to be a way to make first day of 9th grade easier on the parents and kids just like Emily and I. Should I touch base with the resource teacher and discuss a potential variation of the ambassador program where parents of kids with special needs already in high school could organize something the week before first day to help new parents…

Maybe calling new parents, ask if they have questions, create a support group of some sort. Should parents of kids with special needs be invited in on first day like the parents of the international students?

We are all busy, some parents will not come but the ones who would show-up would be glad it exist and would most likely get involved to help the following years…

After all, we, parents of kids with special needs are a community of our own! We understand each other, we empathize but never pity each other. I would hope that we could make this work!

I don’t want to be the nagging mom, I am not a bad mom and I have worked well with the schools in the past…. however, at this time, because something has been done the same way for years doesn’t make it right.

I will reach out to the resource teacher when we will meet to discuss Emily’s SEP. I am sure if we work together we can figure something out and create a mechanism to help those vulnerable kids and their parents feel safe and confident that everything will go well on day 1 and during their high school years!