PedDays really don’t help:(

Getting Juju off to school this morning was really, really hard :(. 

The day off on Friday put her in even more of a “I’m afraid to go” mode this morning…

I woke up with a migraine and that really didn’t help either. I rested a bit to get my migraine somewhat under control and then I worked on prying her out the door.

When I got back from driving her though, my migraine was worse than it was when I woke up :(.

We had our second therapy session tonight and it is a relief to know that we are getting help with this and we are working hard to make the situation better.

It’s going to take time and a lot of emotions, but we’ll get there…..

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Let’s see what tomorrow morning brings….

It’s Monday morning tomorrow and that means back to school for Juju. And going to school on a normal morning is already hard enough…. Now I’ll be trying to get her in after this being a 3 day weekend…..

She told me earlier that she wanted to try and see if she can take the bus in the morning to school. I told her it’s always good to try, and if she can’t tomorrow then we try again the next day.

She seemed pretty confident up until a few minutes ago, and then it started to unravel. I had a feeling it would. It’s ok though, we’ll keep working towards it 🙂

For now we work on one thing at a time and right now that is getting her to be less afraid of going into school.

The more self aware she becomes, the more fears she gains.

It’s really hard to help her with this as I also have the same feelings and it’s really hard to push past mine in order to guide her…

We have engaged a therapist now, so we are going to get help with this 🙂

Two opposites in one day…

Juju has a lot if sensory issues and they are strong higher up in her body, especially her head.

She is very particular in what hairstyle I can do for her. I can make tight ponytails, but they have to be almost at her neck. I have to make it as “down” as I can. She can’t handle it if there are even two finger spaces under it.

And trust me I have learned how to do the perfect one through many tries and remove and try again….

This afternoon she came to me and surprised me by asking me to put a whole bunch of tight braids in all over her hair. I was shocked and made sure she really wanted me to do this…

I have attempted this before and gotten as far as the first braid at her temple and she couldn’t handle it. It has been a while since she has asked though.

So I had her choose her holders and I proceeded to make as many braids as I could get in…. And she actually let me do it!

I was blown away!

I am so proud of her! This is a wonderful accomplishment!

And she actually kept them in for a couple hours 😊

She wore them outside to play and when her friend joined her she was showing off her braids to her friend :). She was so proud of them :)!

After a little while of playing her friend had to go inside for supper. Juju was invited to go downstairs and join them…

Juju has had a very hard time going different places lately, even familiar ones like school. This friend of hers lives one floor down from us in the basement. But Juju is terrified to go down there if I don’t come with her 😦

So I had to stop the chores that I was doing and take her downstairs. She wanted to go, but she was so afraid she was shaking and I practically had to drag her down the stairs :(. Even though she has gone down there to play with this friend quite a few times, she is always scared to do it without me or her dad….

She stayed right next to me for the first 20-30 minutes that we were there before she even willing to think about freely moving around.

She has gotten much worse in this way. At least before as long as we came with her she was ok to do things as long as she could see me or her dad. This time she had to stay close enough to me that she could touch me :(.

After a while she left my side, but asked me where I was going anytime that I walked around. She was so afraid I was going to go back upstairs and leave her there :(….

   
 

I hope it gets easier soon…

Instead of it getting easier, it’s getting harder and harder to get her to transition into school 😦

She is very afraid of something, I’m just not sure of exactly what. It’s probably a combination of a few things and not just one single thing.

It took me over an hour this morning to get her to put her socks, shoes, and coat on. Then another 10 minutes to get her into the car, and a battle again to get her out of the car once we got to her school. The poor thing was shaking as I took her into school 😦

Tomorrow she has library and gym. Two things she loves, so I’m hoping that will make it a bit easier to get her into school tomorrow…..

A new week begins…

Tomorrow is Monday.  So far Monday’s haven’t been pretty good days.  First she was sick a few Monday’s ago so obviously she didn’t go to school.  Then once better, she completely went backwards emotionally and was afraid to go to school all over again.

She hasn’t had that issue since last summer/fall 😢.  It’s so hard so see her go through that again.

For the past few weeks since the end of Spring Break it has been the hardest battle to get her off to school.

I’m running out of ideas on ways to try and ease her fear and anxiety.

Any day off – even weekends – messes her up again…. It’s frustrating because I just don’t know how to help her through this.

I just hope that tomorrow is a bit better than the past few Monday’s have been…. 🙏🏼

Hard realization :(

Each time I bring Juli to school it reinforces a thought in my mind. Makes me realize it each time, again and again….

Living here is where Juli has most of the growing up that she remembers.

We left our last place when she was 3 years old. This summer will be her 4th summer here. When she thinks of growing up and what she remembers, it will all be about this home not where she was before now….

Her friends are here, her school is here. Juli is spending her growing up years here. Becoming more self aware here.

To her this is home.

Her home is here… Mine isn’t.

To this day, I step out my front door and it still doesn’t feel like I belong. Still doesn’t feel like home….

When I think of home, I think of St. Jeans Blvd and St. Charles Blvd.  When I think of home, I think of Pierrefonds, DDO, Kirkland… It’s hard to realize that home to Juli is not home to me.

I’m not even sure if that will ever change. I still aim to live back in the West Island again, I don’t think I will ever stop thinking about that.

It’s just hard to realize that me being back where I feel I belong, and Juli being where she feels like she belongs is two different places for us.

She has her life here and that is hard for me to remember. It really feels like the wind gets knocked out of me when I truly think about the fact that here is home for Juli, and not me.

Monday’s are the toughest – a double whammy

Monday’s are often really hard days, for both Juli and I.

It kind of feels like a double whammy. For Juli its emotionally based and for me it’s mentally based and routine based.

Juli asks us every day “is daddy going to work tomorrow?” If tomorrow is a weekday we tell her yes. And if tomorrow is a weekend then we tell her no. Sunday’s are hard as that is when daddy has been home for two days and now tomorrow he has to work.

Omgosh, when she wakes up on Monday morning and asks if daddy is at work and I tell her yes, the first thing out of her mouth is “I don’t want daddy to be at work!” She yells this at me with tears.

Breaks my heart….

It can take her anywhere from 30 minutes up to 90 minutes sometimes more to calm down and be ok with the fact that daddy is at work. Once she is ok, then she is able to start doing what she needs to do like eat and get ready for school.

For me though it is very hard to calm her down from this while at the same time trying to keep myself on focused and on track with the Monday routine.

I have been working on weekend schedule for the past two days and even though two days doesn’t seem long it really is to me.

So now I’ve got to go from “I’ve got him home to help me” mode to “I’ve got to get this done with it just being me” mode. And at the same time I have to help her calm down and regulate herself and not allow myself to get absorbed in that and lose track of time all the while trying to change modes and regulate myself.

Sometimes like this morning I don’t manage this very well. It’s really hard to help your child get through being upset when you don’t feel right yourself….

Monday’s can definitely feel like double whammy days. They don’t start feeling normal or better for me until around 5:30pm or so. Probably because at that point JP will be home soon and Juli understands this and that makes her feel better. Also by then I’ve had time to get into gear and finally things start to fall into place for me too.

A like Monday’s in one way because the craziness of the weekend ends, but in other ways not so much as what I’ve described here happens most Monday’s…..

As I mentioned in my previous post, I think the one good thing that happened today was that Juli had a good eating day. But other than that it was very much a typical double whammy Monday…….

Today wasn’t so bad

Today wasn’t as bad as I was expecting, but not a good as I was hoping for.

I was hoping that it would be as if she hadn’t missed any school and she would get up as normal and there would be no difference than any other school day.  Well, I think that would have been too much to ask for after a week off lol.

I did try to get her up about 45 minutes earlier than usual and that didn’t go very well due to the time change. I tried to wake her up early and ended up having to drag her out of bed in just enough time to give her a bit to eat and rush out the door.  Not the best thing to do with my child that has trouble transitioning.

While getting her dressed and ready she did start telling me that she didn’t want to go to school which I was expecting and I was ready for it lol. I had all my reasons why she should go to school and that I couldn’t wait to hear all about what her teachers had planned for her first day back.

After a couple of small and medium meltdowns she started using what she had learned from one of her favorite shows “Daniel Tiger’s Neighborhood” to calm herself down.  We sang the calm down song a few times together and that helped her to feel better.  After that she was a bit more willing to get ready to go – thankfully.

The rest of the time getting ready seemed to go better. Thank goodness too as we were on the verge of being late from having to stop and deal with those meltdowns.

We managed to get out the door in the nick of time :).

Other than her stimm of constant talking on the way to school the ride went not too bad.

We got to school and she kept on referencing things and comparing them to things in Daniel Tiger. I take this as a good thing. She was trying to find a way of being ok with going to school.  We got her out of her out door clothes and that’s when she started getting upset and scared as she realized her classroom (and my leaving) was just on the other side of those doors…..

We had to sing another calm down song and remind her that Daniel Tiger and Caillou both go to school just like she does.  Her teacher came out to get her and had to practically drag her into the class, but at least it wasn’t kicking and screaming….

So all in all it wasn’t as good as a normal school day but it also wasn’t as big a fight or battle as I thought it would be :).

I am very grateful for that :).

Changing schools was a good idea :)…

At the end of last year I was really debating changing her school. Her therapist felt that changing her school right after we had done a big move would be too much change in such a short time. I agreed, … Continue reading

Time Timers are awesome….

The Psycho-educator from the CLSC came for a visit on Tuesday. She has referred Juli to the Ted Program, but there is currently a 1 – 1 1/2 year  waiting list for this program. This psycho-educator would have been assigned to me if Juli just had the sensory issues and not autism. She knows that we are bad need of services, with all of the private therapies we are investing in, and requested to her boss if she can give me some assistance until the Ted Program has placement for us.  She is not an expert in autism, but she is doing research and would like to do her best to help us.

I feel very blessed that I have been lucky enough to get such a good educator to help us. She has been the one following up with me since I made the request after the move and since then I have barely had to chase after her. She has always been the one to connect with me.

I went into her office a few weeks ago to connect with her, let her know all about Juli and gave her a copy of all the evaluation reports.  she took all of my information and proceeded to match up any services that she knew of that could help me. That is what Tuesday’s meeting was for.

She knows that I am pressed for time in the mornings as Juli is in school for just over 2 hours and she doesn’t want me to have to worry about being stressed to leave her office on time to pick up Juli. So she wanted to come to me this time and go over all of the resources for me.

She gave me some people/places to contact for respite as well as social groups and she inquired as to what our most urgent needs/concerns are with Juli. I mentioned the transitions. She referred me to a good app on my iPhone that I can use to help with the transitions. A time timer.

Juli’s psychologist had mentioned this in the session when she gave us Juli’s diagnosis.  I just hadn’t had a chance to get one yet for her and really didn’t comprehend just how much of an impact this could have on Juli.  Man was I surprised!

A time timer is simply a round count down clock that helps to show Juli literally how much time is left till a certain activity in a way that she can actually visually comprehend.

Time timer

I never realized just how awesome this little device can be.

I decided to try it out for the first time yesterday as it was a pretty hard day for us and anything that could lessen the meltdowns that Juli would go through would make the day just a little better. We got home from school and I knew that she had to listen to her headphones (her music therapy) for 30 minutes at some point in the next couple hours.

I let her eat her lunch and then when she was almost finished I reminded her that she had to listen to her headphones soon. I got the usual protesting on the verge of turning into a meltdown and told her “how about we use your new timer?”.  She asked me how. I could see she was getting a little bit excited…. I set the timer for 20 minutes as it was 1:25pm (so we would put them on from 1:45-2:15pm) and I explained to her that when she saw no more red then it would be time to wear her headphones. She was actually ok with this and I was thrilled. It was the first time that I would actually be able to get her to put them on without telling her every 15 minutes for 3 hours straight that she would have to wear her headphones soon. Which trust me is very mentally exhausting.

Usually we come home and from then on I let her know that she will have to wear them and it usually takes her about 3 hours of me telling her this before she is calm enough and willing to accept putting them on. And I have to remember to let her know every 15 minutes minutes that she will have to do it. We have been doing it that way for months.

She watched the red going down and was actually excited about it. “Look mommy it’s going down!” I kept on saying “I know!”. It was really cute! I was hoping and praying that this was going to work. After months of fighting I didn’t think it could be that easy.

I was wrong. It was.

When it got close to the end she was super excited. Then when the soft alarm went off she actually told me that SHE was going to go and get her headphones!  I was stunned and thrilled. She did. She went and took them off of the table and brought them into the room and put them on her head. I helped her to adjust them, but she wanted to put them on herself.

Then she actually asked me to put the timer on for when she could take them off. I very happily obliged and set it for 30 minutes. I was waiting for her to get upset at how much red, but she didn’t. She actually accepted it and sat down to do her games while she listened to the music and quiet animal sounds.

Wow, this time timer really is amazing and it really did make this day easier for me. We used it again to prepare for bath time and that went a lot smoother than usual as well :).

Thank you to her psychologist for recommending this to me and to the psycho-educator for referring me to the phone app version.