Author: autismlighterside

So normally I talk about my son a lot but for this post, I would like to talk about my daughter.

She was diagnosed with ASD just over a year ago. It came as a surprise o us but then it also made a lot of sense once we started thinking about things that had transpired growing up.

It was a shock for her but also a sense of relief that some of the things that had happened to her and continue to happen finally made sense.

Last night I was in the hospital emergency room with her late into the night. It was her second time that day she was there. As I sat beside her waiting, I looked over at her and I got tears in my eyes because I felt so bad at what she was going through. She was having severe muscle spasms in her neck area. This was happening beyond her control which is why we we there. It was disturbing to watch and even harder as I knew how badly this was affecting her. I knew this was from medication as this had happened with our son many years earlier with one type of medication he was on.

As I sat there, I wondered if she ever felt cheated – cheated of attention, cheated of her diagnosis, cheated of what should have been put in place for her to cope many years earlier.

I already knew the answer to the questions because she’s made it very clear more than once that she didn’t get attention, that she didn’t have a childhood, as well as many other things that I won’t get into. Is she right? Yes and no.

Yes, because if I was in her shoes I would probably have some of the same feelings she did and no because I didn’t know what was going on.

Do I wish it was better that I could have done more? Yes, every day I wish that I only knew what was happening.

II realize though that there is absolutely nothing I can do about what happened and what did not happen. I can only move forward and try to do my very best to ensure she is cared for, has the supports in place that she needs and help her navigate through difficult moments.

Being on the spectrum can be challenging and it is hard at times, especially for her.

As I sat in the emergency room, I listed to her explaining all her diagnosis as I held the bag with all her meds and I was glad that I was there to help her in this moment no matter what happened in the past.

When she finally go a shot that help stop the spasms, I waited for it to take effect, I soon became relieved when the spasms stopped and I was able to see that her body was able to relax.

I realized how hard just getting through some days is for her and I really admire her strength and dedication to getting well both physically and mentally.

I’m thankful for these quiet moments I have with her.

I have to talk about school because this is what has been consuming my life since Christmas, which is why I haven’t posted in awhile.

It’s hard for any parent I know to deal with all the changes with school this year. You don’t know what’s going on from one day to the next.

I know some of you who follow my blog do not live in Canada. In our area of Toronto, the kids have not been back to school since before the Christmas break. They have been doing all of their classes on-line.

I have to admit that it is very challenging for me. Our daughter is in grade 12 so trying to keep up with what she needs to have in-tact for university or college next year as well as keeping her motivated has not been easy. The easy part with her is that she can do all of the on-line classes on her own and prefers not to have my interference (go figure!)

But for our son, it is different. Although he’s really good on zoom, he still needs help or shall I say reminder that he has to get on there at a particular time. I also have to make sure with him that he has all of his items needed for the class ready to go. Sometimes I am there to help him and other times I am not. When I am not able to be with him, I actually record the class on his phone so that I can go back and scribe his notes later so that he can just focus on listening and understanding during the lessons.

It is also challenging because he is in high school as well so each “quad” they call them, they take two courses at a time. So every few weeks, I need to communicate his needs to the new teachers who have probably never met him or worked with him and make sure that they are providing his proper accomodations for his work.

Another issue is that he speaks so incredibly quiet on zoom so half the time they can’t hear what he is saying.

On the flip side, I don’t think that it is any easier for the teachers. They have their own challenges and learning and teaching in a virtual environment has pros and cons.

One thing that I really like about this type of learning is that you don’t really need to get dressed or have that time where everything has to be done in the morning before you go to school. So half the time, our son is literally just been awake for a short time before he goes on-line. Also, if he is really tired, he can just have his laptop on his lap in bed and listen to the lesson.

Anyway, I have lots more to say on the subject, but that’s it for now…….. see you soon!

So, it is the season! It’s definitely a different year for all of us this year. Our world is a different place and the focus for all of us is our health.

Even though things are quieter, in our house that’s not a bad thing. We are all pretty much home bodies so actually being at home is enjoyable for us. Also, we have had more time to focus on decorating, wrapping gifts and baking which sometimes can feel so rushed. This year I don’t feel the pressure that I normally do.

This year we are missing a couple of family members who have passed away since last Christmas and we will all really miss both of them this year.

This is the first year that we have put our tree up before December! The kids did the entire thing together. It was so nice to watch them working together.

We are looking forward to the school break and spending some quality time together as a family just hanging out together. Hopefully we will watch some movies, play some games and bake some yummy food!

What are your plans for the holidays? Above all, stay safe!

So the other day I was just thinking about communicating as this is something that we struggle with in our house.

I was walking our dog and there was another lady walking her dog on the adjacent sidewalk. She was speaking a different language to dog, but ultimately our dogs wanted the same thing. They wanted to smell each other.

I was thinking just amazing it is that dogs know what their owners say no matter what language it’s spoken in and they don’t have to guess what you want because the tone of our voice and the non verbal cues are quite clear.

I know this isn’t a revelation by any means but it just made me take a step back and realize that it’s not always what I say. Sometimes it’s my tone and my non verbal cues that can either be inviting or terrible.

Especially for our son, I sometimes have to stop and be more understanding of what exactly he is communicating so that I can help him develop these skills more. When you really stope to think about our non verbal cues on a daily basis there are so many.

Considering both of our children are on the spectrum, I have to be really aware of what I am communicating to them beyond my words. I know that it’s hard for both of them at times as communication is something that both of them struggle with in different ways.

I hope to improve my awareness on this and hopefully it will help the relationship I have with my children as I want them to be able to understand the world better.

From time to time I speak about biomedical treatments and the progress we are making with them.

First of all I have had to re-evaluate progress in a different way. Before I used to look at progress as being skills that were gained and new things my child was doing, but now I also have to look at it as things my child is not doing, which may be beneficial as well.

What I mean by this is that our son in particular has lots of annoying habits and just things he would do in general.

The other day we were at our functional medicine doctor and he commented to me that he couldn’t believe how calm and settled our son was in the office. I looked over at him and said “yeah, he is isn’t he?” We have added the SCD diet since July and things in his body are working a little better which I think is contributing to a new focus and calmness.

We were discussing heavy metals again about doing another challenge test to see what metals are still in his body as I feel that there are still some there.. He had previously shown almost toxic lead levels which took two years of chelation to get rid of. Chelation is a method of drawing the metals out of your tissues and helping you excrete them through urine, sweat and bowels to put it in simple terms.

Some people don’t believe in this method and that’s fine, I’m not here to convince you either way. I am just sharing our experience with this process.

The chelation we previously were successful with was with a compounding drug called DMSA. The first and best way to remove metals from the body is to do it through IV treatment as this is the most aggressive way and if your child is older, which is the case of us, you need to be more aggressive as these metals have probably been embedded in the tissues for many years.

Knowing our son as well as I do, I feel that there are still metals in his body. He exhibits certain behaviours that makes me think this is definitely a possibility. So the doctor asked me if our son would sit for 15 minutes with an IV to do a challenge test. Three years ago, this would not have even been remotely possibly but I replied that I thought he would now. See this is progress! Stay tuned for an update on this!

Also, he went to get his first filling this week without going under anesthesia. I thought he was ready and since the filling was very small they said that they could do it without freezing. I am happy to say that he did amazing! We watched a YouTube video the day before on what was to happen and I instructed them to just let them know what they were doing as they did it so that he would feel more comfortable.

He didn’t like some of the things that happened, and he did ask to leave in the middle, but then he let them finish – progress!!!

When you think of progress for your child, what comes to mind?