Going to have a tired one tomorrow….

I’m going to have a very tired little one tomorrow :(.

Her dad is away in TO for work and she misses him, so of course, she can’t fall asleep.

We’ve been trying to get her to fall asleep since 7:45pm and only about 10:13pm did she finally fall asleep.

She is going to be one tired sweetheart tomorrow, and that is going to make for a very long day….

I really hope she will be ok in the morning…..

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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…..

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 ๐Ÿ™‚

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 ๐Ÿ™‚

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 ๐Ÿ˜Š

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 ๐Ÿ˜ฆ

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 :(….

   
 

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 ๐Ÿ˜ข.  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…. ๐Ÿ™๐Ÿผ

It’s completely crazy how much damage a week can do ๐Ÿ˜”

Juli was doing really great before the Spring Break and then it all went downhill from there :(…

Almost everything she had mastered went completely downhill.  She went totally backwards.  I’m not talking a bit backwards in one or two things, no, I’m talking about backwards in almost everything she does.

Time off has set her back a bit before, but this is the worst of it yet….

She used to be ready to walk out the door and head down to her bus before I had finished getting dressed. Now I have to start telling her to get ready half an hour before her bus, and try to calm the complete fear that takes over ๐Ÿ˜ฆ

She used to love taking the bus, now very afraid….

Everything down to the smallest detail has changed, and I’m trying to figure out how to help her

Going to be a long day….

Juju is off for a Ped day today and she is already becoming bored. Not for lack of things to do though. She has plenty to do.

This is because of a change in routine. She is used to going to school and now she is home and that messes her up BIG TIME!!!! ๐Ÿ˜•

She has games to play, puzzles she loves, school work to practice, and many other things to do including help me with chores – which she loves- but nope, she is feeling “lost” and has to figure her way out of it…..

She has a play date this aft and she knows it because she and the girl talked about it and planned it on Wednesday. Normally I don’t let her know about these things till a few minutes before as she will be obsessing on the clock and when is her friend coming.

She still gets very stuck in her repetitive pattern when she is very anxious :(….

She knows she has plenty of things to do, she just needs to figure out how to start feeling “normal” again.

Until she does, it’s going to be a very long day ๐Ÿ˜•

Feeling safe feels good :)

There are times when I experience a situation that prior to being diagnosed I would not understand why things are the way they are. But now since I found out that I have Asperger’s I have quite a few “ah, that’s why!” Moments….

Those moments feel really good. It’s like a sense of completion :). It’s like something that I always thought was broken in me or I didn’t know why I was different, I now have a reason and know that it’s ok to be exactly how I am ๐Ÿ™‚

I had one of those moments on Saturday after juju’s cheer comp. I was with her cheer group which is full of people who understand special needs :).

They are watching a movie and they are all laughing like crazy at this movie. I look at the movie and I don’t understand what they are laughing at….. In fact, I found the movie a bit stupid.

Out of every 10 jokes that they said, I got maybe 2 of them….

What felt the most amazing though is that since I’m with all of the team parents I was in a safe environment and I didn’t have to worry about what they thought of me ๐Ÿ™‚

That feels so good!!! 

Total 360 :( !

We were at the dentist this afternoon and I was not sure what kind of reaction to expect from her….

Last time she asked me to stay out in the waiting room and she wanted to go in and do the visit all by herself like a grown up….

This time was the total opposite ๐Ÿ˜ฆ

She was already crying and in a repetitive loop even before we reached the door to the building. 

The dental assistant was waiting when we came in and she saw Juli’s emotions right away.

She told me quietly that there is a good chance we will have to postpone as Juli is way to upset to get anywhere :(.

Juli’s autistic tendencies were showing themselves more than I have seen them in a long time. In fact longer than I can remember….

She was holding her hands over her ears, rocking slowly back and forth and leaning her head forward. I have rarely seen her do that. For some reason this visit was very upsetting to her.

And so unexpected since last time she insisted on doing the whole check up on her own.

We have to go back in a month in the morning and try again….

A nightmarish day is finally resolved and over….

Today was definitely a roller coaster!!!

It was either involving tons of running around, tons of stress or tons of worrying and hurrying….

I just got home about half an hour ago and I left the house at 10:30am. I didn’t stop once during that time.

Well, I’m stopping now, and I’m taking a good part of tomorrow off!! I need some time to organize….

Today was a complete break in routine and that didn’t help but add to the other stressors of the day.

Mom is settled in for the night and she is feeling much better. Today was a really traumatic day for her and I’m just glad she is now comfy and able to relax ๐Ÿ™‚

Trying to relax….

I know that tomorrow (today now) is going to be a full, busy, crazy, hectic day.

I’m half looking forward to it and half not. I definitely know that without the help of the Zoloft, I wouldn’t have been able to handle even half of this.

I’m not handling it very well. One of my bff’s is pretty much dictating and I’m following. But I’m extremely grateful she is because without her this wouldn’t be happening!!

And it needed to happen a long time ago!

From now on my mom is going to have people around her all the time that care for her and about her. This is a world of relief for me.

Now all I have to do is handle/survive the craziness of tomorrow and then everything should be ok lol…. Yep, that all I have to do….. That’s not much is it?!?!

I decided I needed some colouring therapy to try and help me relax so I can sleep well and not wake up all the time. I’m trying my Mandela colouring book and building a pretty color scheme โ˜บ๏ธ.

The Zoloft works well for my daily life things, but this is way more than that – way more….

Just please say a prayer that the move for my mom goes smoothly, or at least as much as possible ๐Ÿ™‚

So much going on….

This is the first few minutes I’ve had a chance to sit down and relax in about the last 24 hours….

So much is going on….

I went from not having any leads for a residence for my mom to go to on Thursday, to having to run out the door on a spur of the moment yesterday for a visit in just over an hour, when it takes me almost an hour to get to my mom.

I have not stopped since I started going at 11:30am yesterday!! I came home last night and practically passed out on my bed within minutes. Woke up this morn and been Non-stop the whole day…phew!!!!

Feels really good to stop!!!

I have a lot to do tomorrow! Tons of forms to fill in and phone calls to make. I need to make sure she has her tv to watch when she moves into her apartment. Also have to plan and organize a few more things to complete her setup.

Tomorrow is going to be so busy ๐Ÿ˜ฆ

Hard weeks ahead….

My mom went into the hospital at the end of November 2015.  She was feeling really awful.

She has type 2 diabetes and they found her blood sugar was too high as well as some of her other medications needed to really be adjusted.

She was a mess emotionally and I was relieved as I knew the hospital was the best place for her to get taken care of.

It was determined by the hospital that her current place of residence is no longer suited for her and it was agreed by the landlord and shut down.

When this happened it was a crazy rush for me to get it cleared out and into storage.

That was during the Christmas 2 weeks and that was really an ordeal to take care of while taking care of my sweet kitties at the same time.

Now we have to find my mom a new home suited to her needs. That won’t be easy.

The doctors and specialists determined that she needs help and certain services. I agree, but my mom doesn’t.

That is where the difficult part comes in…… Finding the perfect place for mom – that takes care of her needs – that SHE loves…..

That is going to be the challenge. What she wants, is not what’s best for her……

Never thought I’d be colouring again :)….

When one of my BFF told me that I should try colouring to help me de-stress and calm my anxiety, I thought she was joking.

Then she told me that there are colouring books for adults and they are designed to help us relax while we colour.

She sent me the link to check some out online and after quite a bit of research on them, I took the leap and got myself a few :).

I’m so glad I did!

Now I’m building my collection of adult colouring books and I’m even collecting different types of pencil crayons and pens to colour with.

There is a whole world to explore when it comes to colouring books for adults, and I have just begun my journey into this world :).

I’m really looking forward to getting to dig deeper. I’ve found a doctor who colouring book as well as a Harry Potter series of colouring books that I’m definitely excited about!!!

I can’t wait to see what other exciting books I will find.

This is one of the basics that I am starting with. I like it as I can be creative. There is not preset colours I should be using like there are in pictures with plants, animals and people…. 

  
There are so many out there!! Something perfect for everyone :). You really should give colouring a try โ˜บ๏ธ.

Anxiety is not easy…..

It’s very hard to have anxiety come back when you get a bit of relief from it……

I had a bit of relief from it since I started the Zoloft on Friday night. It’s a really great feeling. The anxiety doesn’t all go away, but a bit does and I feel so much calmer ๐Ÿ™‚

It sucks however when I come close to my next close, it starts to wear off and all the anxiety and tight feelings come back.

It was almost too much for me tonight…. To have some relief and then to lose it all and get the anxiety all back…

I felt horrible tonight.

I am really looking forward to Friday when I get to increase the dosage to the next level.

So far no or very minimal side effects. In fact I might actually be sleeping a bit better. We’ll see how tonight goes….

Tonight was dose #3 and it may not do a huge difference, but it’s definitely one I can feel :), and I’m very thankful for that.

Juli’s Visit to the Dentist….

Juli’s trip to the dentist ended up being both triumphant and sad.

I’m sure the triumphant wins, but the sad aspect is still there…

The dental assistant and I managed after about 10 minutes of explaining to her over and over that “if you let them look at your teeth nicely, you won’t have to lie down”…

It literally took us at least 10 minutes to make her believe/understand this.

Her biggest upset was having to lie in the dentist lap and be held down while he looks at her teeth. Because she was so hysterical the last times that is what had to happen as she wouldn’t even let him touch her :(.

Up until we walked into the reception area she was really excited to go. She had been watching Caillou’s dentist story for the past day, and was actually excited to go….

That is till we got to the reception area….

I’m not sure if she was expecting to go to Caillou’s dentist, because the minute she walked into hers she went into a complete meltdown.

I reminded her about Caillou’s time, but she just kept saying that she didn’t want to be at the dentist.

I was practically having to hold onto her to keep her from running out :(.

It didn’t take long for the assistant to call us :).

Then I explained to Jodie what was going on and what Juli was scared of.

Then we began to try to convince her that it was going to be ok. Poor thing could not stop crying :(… I felt my heart breaking for her.

Next came feelings of complete pride and excitement….

SHE DID IT!!!!

She sat up in the big girl chair and let Jodie do the cleaning. Then we convinced her to let the dentist count her teeth. She let him all the while the tears are just pouring down her cheeks….

But most important – SHE LET HIM DO IT!

I was practically in tears myself. Scratch that, they were coming down my cheeks too :). I was so happy for her and proud of her!!!!

Way to go Juli!!!!

Then came the sad part. When she was done and out of the chair, the dentist looked at me and told me that she has cavities and will have to have anesthesia to get them filled. He knows that he can’t do it himself.

My stomach dropped. Cavities.

He said it’s quite normal for autistic kids since their mouths are so super sensitive. He often finds cavities between the teeth as she can’t reach in there properly and get between them to clean them properly :(.

They also can’t do X-Ray there as she would move too much and that is dangerous. So they will do X-ray when they get her under anesthesia to see exactly what her teeth look like.

I have to call on Monday to book the appointment for during the month of November.

So now I have to debate on whether to put white fillings in or the silver covered by Medicare. I don’t mind the silver I’m just concerned with what kind of meltdowns or freak outs that will cause each time she looks at her teeth.

We teach her that she brushes her teeth till they are shiny white. Whenever she has anything including lip gloss on her teeth she flips out. How will she handle seeing silver each time she looks in there…???

Not sure how this will go…

First stop on the agenda this morning is Juli’s cleaning at the dentist.

She has been watching Caillou episodes to get prepared, but not sure if it is enough.

Based on the last time, I’m nervous. She walked into dentist office and started freaking.

Let’s see how this goes.

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 yearย  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.ย  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.ย  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.ย  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.ย  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?”.ย  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!ย  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.

What a Long Day ….

Image

The day started off with plans for our usual Monday. Therapy session with Jen in the late morning for her speech, then off to her next therapy session with Stephanie for her OT.ย  At this point we head out of the WI and back home as fast as we can before we have to end up sitting in over an hour of traffic.ย  Then, when we get home, we would do a bit of relaxing and then finish off the day with a few “start of the week” chores. All of that would take us to her dad getting home and supper time.

That is how our Mondays are supposed to be….. But not this morning. This morning started with her telling me has a “Bobo”.ย  I think to myself “Ok, another bobo”. She is always claiming she has one. She watches all of her different shows and everything she sees on them she copies. If Caillou has a stomach ache then she also ends up having a stomach ache, and so on. The reason for her doing this is surrounding her developmental delays and the autism.

So this morning was another bobo. I tried to be sympathetic but not to encouraging until I find out if this was a genuine one or not.ย  Unfortunately I found out, much to my dismay, that it was real. She showed me the bottom of her foot and sure enough I saw a little dark line.ย  I was getting very nervous as she was really upset and that also told me that this time it was real. I was hoping that this was just a pen mark as I know she put one on her leg just the day before.

I’m trying to check it out and the more I was trying to look at it the more upset she was getting. I needed to see if it was a splinter or a pen mark. I pulled her into my arms and managed to calm her down just for a few seconds, long enough that I managed to run my finger quickly across the bottom of her foot and I felt the splinter :(. Which also sent her into complete hysterics again :(….

This changed the plans for the whole day. I knew there was no way I would be able to get this out on my own. Not with how upset she gets. She would kick and thrash around way to much for me to be able to get it out.ย  This meant a trip to the doctor.ย  Her pediatrician is still in the West Island so I guess it was a coincidence that this happened on the one day that I was already going to be in the West Island.ย  The only thing I was trying to figure out is where I was going to fit this appointment in. Her pediatrician finishes at noon and we have two therapies back to back from the moment we arrive in the West Island at 10:45am all the way through till 1:30pm.ย  And they both require 24 hours notice or you have to pay for the time.

I finally got a through to her pediatrician’s office and got a same day appointment – for 3pm. So much for getting out of the West Island and home before the traffic started. On the bright side though I didn’t have to worry about her appointments.

We got ready and headed out of the house as by now, after all of this, we were almost late for her first therapy appointment.

Therapies went fairly well except that her foot seemed to be bothering her. She was limping sometimes.ย  We hung around the mall for a little bit after her OT and let her burn off some energy. Then we headed to the doctor.

That was not fun. No not at all. She started getting agitated from the moment we arrived and by the time the doctor walked into the room I could barely hear what he was saying and visa versa. She was in hysterics. She was practically clawing at me to get out of my arms and away from him. He examined her foot as best as he could as fast as he could and then let me calm her down so he could talk to me.

Diagnosis: splinter is under the skin and has to be cut out. He doesn’t have the equipment at the clinic and he wouldn’t attempt if he did as it is way too risky with her that agitated. There is a chance that her own body could realize it is a foreign object, attack it and destroy it, but he can’t guarantee that. If that doesn’t happen then I have to take her to the hospital emergency and spend who knows how long there. That means I pretty much have to plan that this Friday or next Monday I am spending my day at the hospital and I am going to have a very anxious and extremely stressed out girl on my hands and then I am going to have a very drugged one after that as he said she will need to be tranquilized :(….

My poor sweetie. All of this for a splinter.

A friend suggested I soak her foot in tea tree oil to help draw out the splinter. If her skin is really weak from the soaking then maybe we can get the splinter out that way. Going to try anything.ย  There was no way she was willing to put her feet in the water today though. I think she just had way too much attention to her foot yesterday so we need to leave it alone for a day and let her calm down emotionally.

The rest of her day involved more stimuli yesterday. She was totally fried by the time she finished supper. Which means I was totally fried…. We stayed in the West Island till after dinner as I was hoping that she would fall asleep on the way home and I wanted that to be in time for bed. We headed out around 8pm.ย  She fell asleep in the last five minutes of the ride (I guess that is how over stimulated she was) and she woke up while I was carrying her inside.

We got home 11 hours after we left the house in the morning. That was a crazy long day! I was so burnt and so was she. Her foot was still hurting her and she was in one of her repetitive loops about needing to go to the other doctor to fix her foot. There was no way I was going to start going to the hospital then unless it was an emergency. Doctor said it could wait up to a week unless the area changed.

Took me over an hour more to calm her down enough that she fell asleep and then I passed out – for two hours.

What a long rough day that was. I hope I don’t have to have a day like that again for a while. Not sure about that though if a hospital day is my near future…..