What’s in a word?

dream big signage

Different words mean different things to different people.

We all come from different backgrounds and we all have different experiences. I want to share some of the things about language that I am personally very aware of and that I keep in mind.

I like to refer to my children as having unique or different needs. Keep in mind that I am not judging anyone else for the language they use that makes sense to them.

I don’t like to describe my children as being “autistic” because that’s not who they are. To me, they are strong individuals who possess many different and unique talents and at times, challenges.

It’s like when the term “disabled” is used. In my view, it has a negative connotation, although perhaps that’s not what is intended. Perhaps it is in some cases. I prefer to look at is as a person has different abilities. All of our abilities are not the same whether we face physical or intellectual challenges. But we all have something to offer and a person can always learn for as we know our brains neuroplasticity can change and we can learn throughout our entire lives.

Neurodiverse is the correct PC term now to use in case you were wondering. I don’t think it is helpful to define any person on what they can and cannot do and describe them this way.

This is my opinion, but as I live with two children on the spectrum, I am extremely sensitive as to how much words can hurt and how they can strip a person of their self-confidence and make them feel like they are not good enough.

So my tip for you today is to think about reframing your language, be sensitive to others and above all be kind and loving. Because don’t we all need more of this right now?

Death

purple petaled flowers near black book

So during this covid time our kids grampa or “papa” as we called him passed away.

He did not pass away from covid but he was fighting cancer and it just happened that it was during this covid time.

It was an extremely trying time for our family as he had to be moved from pallative care to an air B and B as they had restricted visitors into the hospital.

Through the past year we had been through his struggle and had been been to see him at the hospital at times when he was there during his fight.

So we had to prepare both of our children for what was to happen. Have you ever tried to explain death to someone on the spectrum? I didn’t have a road map to follow only my instincts.

Over the many months of illness, we explained it different to both of our kids. For our daughter, she understood more about disease so intellectually she knew more what to expect. For our son we associated the hospital with illness and we talked to both of them about it over the course of a year. It was not the outcome anyone wanted and neither of our children had much previous experience with someone close to them dying.

The hard part for everyone was the actual time he passed away to us being able to have a service for him. Many months were in between.

One way with our son that made sense to him was that when “papa” was alive we prayed for him every night in our prayers. He took over these nightly prayers. After he passed away, we changed the nightly prayers to pray for Grandma to keep her safe and well. Every night now, he prays for his Grandma. Also, we talked with him about Papa being in heaven watching over him. Although the concept was a little hard to understand, he got it.

We re recently had a memorial service for him. As a said, time had passed. I went over the procedures for going into the church and wearing our masks and the fact that we had to stay away from everyone.

When we arrived after we sat down, I just briefly whispered to him that we were there to celebrate Papa’s life. He just turned to me and said “yes Papa is dead.” Kids, especially those on the spectrum, just tell it like it is. Both our children were emotional at the service in different ways. Our daughter has trouble with her emotions which is something she struggles with.

Later that afternoon when we got home I had some cards I had asked Papa to write when he was in the hospital to each of them. I felt it was a fitting time to give each of them their card and note that they could treasure always. Our daughter started crying but she was happy she had this from him.

I believe that there is no easy way to deal with this. There is no “right or wrong” way either. I think as parents we just have to figure out what we think is best and go with it.

This is my experience with this topic.

If anyone else cares to share how they have handled this situation, I would love to hear your story!

We are all grateful for Papa and we miss him so very much.

What do they do?

shallow focus photography of school of fish

I know that I can’t be the only one to wonder this, but what do they do? At school? In other environments? When they are alone?

Sometimes, it can be and feel incredibly hard for me to get information out of my son. I know this isn’t necessarily because of autism, but this definitely contributes to this questions for me.

I know what he takes in school, the courses, I see the work that he does, especially now with covid, many times I am actually there for some of the work.

It does kind of baffle me sometimes that our son has this entire life at school that I’m not a part of and that I know very little about.

I don’t really know if he likes the teachers or if he just says he does. What parts of school does he get excited about and that enhance his learning? I can guess because I know what he enjoys doing and I know the areas that he struggles with.

How does he function just in the day-to-day life of school? Is it hard for him transitioning to things? Does he have favorite people, teachers he likes to hang around with?

It’s funny at the end of the last school year they had a zoom call where all the students from some of the classes that he takes and they were showing pictures of activities that the kids had participated in at school. I was surprised to see him playing ping pong. Huh? We have this at home and he never showed any interest at all.

I always just wonder……………………….. and I’m not part of that in his life.

Not that this is good or bad. If anything it’s probably good. I guess it’s coming to the realization that when they are young, you know everything that they are doing, but as they get bigger, you take a step back and let them be independent and yet with that comes wonder and questions as well as gratitude for the things past and the things that are to come.

I’m especially grateful for our son’s school and the way which he is accepted and appreciated for the skills that he has and for the skills that he is learning.

I hope everyone wherever you live and whatever type of school model you are currently following is having some success and hopefully not too much drama!

Until next time…….. be well!

These days………

background beautiful blossom calm waters

These days are busy, crazy, filled with emotion, sadness, happiness and uncertainty.

We have two children (teens now) on the spectrum now and the both present their own unique set of challenges, especially during this time.

Our daughter is in Grade 12 but she only goes into the actual school once every 4 days because she has a spare with one other class during this quad. Our son has 2 courses and goes into his school Tuesdays, Thursdays, and some Fridays. They are both on-line every afternoon as well.

I feel like I’m a parent, a teacher, an advocate, a chef, a housekeeper – all of it. But it’s okay because all anyone can do in these times it to take it literally one day at a time and enjoy the moments that being at home offers all of us.

I have daily moments of gratitude for the good things that my children do and I try to focus on that. No one knows where this pandemic will take us. Will the schools eventually close? Will they learn the course material? How will they mental health continue to be? I cannot see the future. We can only live in the now.

Honestly 3 years ago I never would have predicted that our son would be able to adjust to so many transitions and differences in his schedule that is happening now. One day on, one off and online at different times.

It’s so amazing to me how far he has come and honestly I don’t know how or when this happened, it just kind of evolved over time.

It’s like for one whole year I had to tell him to close the door of the bathroom ten times a day. I had signs on the inside in bold saying please shut the door and miraculously one day he just got it. Sounds silly? To some, but not to those of you who live with someone on the spectrum.

No matter what challenges this pandemic presents to you, just live in today and be strong and find those peaceful moments, even if it’s just a brief moment.

Until next time…………..

Biomedical – diet

vegetables and tomatoes on cutting board

So we have been on the SCD diet for about 6 weeks now. This is in addition to the Gluten Free, Cassein free, sugar free, soy free, and corn free.

The SCD or “The Specific Carbohydrate” diet was highly recommended to us by our Functional Medicine doctor who has been treating our son for close to 3 years.

If you don’t know this, kids/teens on the autism spectrum have extremely sensitive guts. Their guts don’t allow them to process food in the same way that someone not on the spectrum would be able to do. Since your gut is basically your second brain, you can see how it is so important to pay attention to the diet.

Now diet is not just important for people on the spectrum, it is hugely important for everyone. Diet can help heal and repair. Food is very healing to the body so you need to be conscious about what you put into your body at any age.

We struggle with high candida levels all the time. In fact, our son is on a protocol where he takes an antifungal prescription medication as well as herbals. He goes in waves where his body would be able to get rid of the candida, but then it can keep coming back. This is not a battle that is simple and easy to fix. In fact, it’s a lifelong thing that will continue to happen unless intervention is done.

Some kids with autism will be on certain medications their entire life because that’s what they need for their system to work properly. Sounds overwhelming? daunting? too much work?

Just to try to explain this in easy terms, anytime our son would eat carbs (ie potatoes, rice) these would turn into sugar in his body and sugar feeds the candida, hence his messed up gut, otherwise known as “leaky gut.” With Leaky gut you can have large cracks or holes in the gut lining, allowing partially digested food, toxins and bugs to penetrate the tissues beneath it. This can trigger inflammation and change the gut flora, which is the normal bacteria that can lead to problems with your digestive track. In people with autism, especially, this affects brain function. Imagine if this is happening in your gut how foggy your brain would be.

Even though the food was gluten free, a carb is still a carb is still a carb – get what I mean?

So, you may wonder how do you heal the gut? Well it can be done a lot with food and supplementation and prescription medication.

For us, we had success with medication (both prescription and herbal) but the candida kept flaring up at times.

Hence, starting the SCD diet. It is a little overwhelming, but it is doable. I have seen much progress in the last 6 weeks. Our son is eating more variety of foods, which is huge because his diet was extremely limited. I am finding new ways to make foods that I never tried before. For example, there is this recipe called Squash buttons. This is taking some cooked squash, eggs, cinnamon and honey and blending them all together and baking them in mini muffin tins. Voila, a vegetable a different way and very tasty. I love them too.

So there are many different recipes I am trying and I am still learning. I am hoping one day to put all of my favorites in some kind of book. Right now I just have the ones I like together. He doesn’t like every single one but for the most part, he at least tries them.

The downside is each night I have to go over recipes to decide what I am going to make for the next day so that takes a lot of planning.

I cook all the time. I cook a lot of squash, almond bread, cashew bread, nut butter brownies just to name a few of our favorites. The food is delicious and honestly doesn’t seem like you are missing anything in terms of taste or satisfaction. I just finished baking a loaf of almond bread and its 10:30 pm! Unfortunately, you can’t buy most of the products you have to make them.

Anyway, it’s worth it because we just went to see his doctor last week and his cells are much better. The candida has almost gone. This has happened before but I’m super-excited this time as I know that the changes we are making with diet are working because its only been 6 weeks since we saw him!

Gut repair can take a very long time so there’s a journey ahead for us but I am excited for what’s to come! With every stone I continue to uncover, more healing happens and it is truly amazing to watch!