Author: autismlighterside

The other day I was asking my son a question. He was not answering my question and I had asked him three times. Then I looked over at him because I was getting frustrated. He looked so very tired. I tried to imagine what it felt like to have someone ask you the same question and then get upset when you weren’t answering it.

Instead of my son telling me that he was so tired and he couldn’t think at the moment, he just blankly stared at me expecting me to know what was going on in his head. This happens more often then I want to admit. The same scenario over and over again.

So why do I keep doing it? Do I think I’m going to get a different result?

I have to dig really deep down for this one and think. When I am tired and someone asks me a question, do I answer them? Usually, but my response can be quite abrupt and perhaps even come across as disengaged.

When I am sad or frustrated, do I always want to share my feelings with others or do I want to just sit quietly and be alone?

When I have had a long day, is a long conversation the answer or just starring blankly at a TV screen?

You see, just because I want to engage at a certain time, doesn’t mean my son necessary does. He may not be in the “zone” at that moment.

Lately, I have really been trying to “put myself in his shoes.” His communication may not have the same conversational piece, but the conversation is there, if I pay attention. You see conversing can be done at many different levels – actions, non verbally, gestures, expressions, movement etc. These are all important factors, especially when you have autism.

My expectations can at times be way too much and this can in fact be a roadblock, rather than an asset.

You see, I know my son probably better than anyone on this earth. I know what he is thinking when I look at him even without him saying a word. His eyes tell a story all the time. When he is happy, they are glowing. When he is sad or tired or just had enough, you can tell.

Trying to connect and converse when he is not open or able to is pointless.

But I NEED to put myself in his shoes. I need to pay attention to cues because the last thing I ever want to do is make him feel like how he feels just doesn’t matter.

So today, I turn over a new leaf. I will make every effort to be more in tune and encourage positive exchange of conversation when he is in a place to do so.

Onward and upward, we go!

Our journey so far has been interesting and rewarding. It has also had many ups and downs as well as revelations.

First of all, I feel so lucky to be part of so many great autism community groups. I continually learn so much from these people. They persevere and never give up. The dedication they have to their children is indescribable.

At times I have to stop myself from saying “I wish I…, why didn’t I…, If only I….”

Secondly I think we have one of the most amazing Functional Medicine doctors on the planet. He is so knowledgeable and he has never steered us wrong. I feel that we were incredibly lucky to find him.

Since we didn’t start biomedical until our son was 12 years old, his issues are far more complex than if we had discovered this when he was much younger. Certain things had already been in his body for many years as well as new exposures to things that we weren’t aware of that were harming him. It was and still is, a huge puzzle. One piece has to be in place and then you can work on fitting all the other pieces together. And for each child the puzzle fits together in a different sequence. Visually, that is the best way I can describe it.

I knew logically as everyone knows how important diet is for everyone, but what I didn’t understand was that because our son’s immune system was compromised that even if he wasn’t actually allergic to certain things, there were just certain things that he shouldn’t eat because they created other problems in his body. For example, children on the spectrum tend to do better if they don’t eat gluten, dairy, soy, sometimes corn and sugar. Also, by not eating these things, his mind actually became much clearer and it allowed him to concentrate better.

Another thing that became apparent was that his body was lacking in many nutrients. He has had leaky gut on and off. Leaky gut is when bacteria and toxins are able to leak through the intestinal wall. This affects how your brain functions as well. When you can’t think clearly, you can’t learn to your optimal ability and you generally don’t feel one hundred percent.

Working on the diet is a constant daily struggle for me, I must admit. I’ve had to read labels, research sometimes each ingredient at a time and come up with a plan that I know will help my child. It’s hard not to be overwhelmed by this portion of the journey and honestly I wish I was better at this part, but I just do my best. My goal is to make one new thing every month and see if our son will try it. Sometimes I am successful and sometimes I’m not, but I just keep trying as that’s all I can do.

Another thing that I didn’t realize was that exposure to certain chemicals can have lasting effects in a person’s body. For us, we have 4 people who live in our house and we can all use the same products but with our son if there are additives that are bad (i.e. like in creams or soaps or toothpaste) he may not have any reaction but the exposure to these additives can build up in his system and if there are too many things like this, it starts to create chaos in his body. This can be manifested in behaviours or pain and possibly irritability.  It can be seen in many different ways.

So this is another really huge thing that I worked on over a period of time. Using glass containers instead of plastic, ensuring we were using natural cleaners and soaps as well as shampoos and non-toxic cookware.

I’m still not where I want to be in this area but I feel that I have made significant progress and I don’t beat myself up about what I am not doing.

We have noticed decreased agitation, more focus and concentration and just the ability to be able to go with the flow and not get upset at all the little things that can go wrong along the way. We also notice that he is much calmer and has a greater sense of his body. For him, this is huge because he is also going through puberty which in itself can create changes in emotional regularity so we feel like we’ve hit the jackpot, so to speak! This is something that perhaps only an autism parent can understand. Needless to say, we are very pleased!

This part of our journey is still a work in progress…..more to come!

How do you prioritize?

I must admit that I struggle with this question on a daily basis.

You see there are so many things going on all the time. There are house things, appointments, activities, pick-ups and drop offs, homework, cooking, taking care of the dog, shopping and self-care. The list seems endless every day.

So how do you make sure that all the important things get done without being stressed all the time?

I used to put myself at the bottom of the list and perhaps if there was time at the end of our long day, I could squeeze in a few minutes for myself.

Self-care though I have realized is very important so I try to exercise in between getting child one off to school and waking up child two. Right now this works for me as I have a block of uninterrupted time.

Prioritizing our son’s things used to be more difficult than it is now. You see I have learned to be more forgiving and understanding and more relaxed. I realize that it’s alright if things don’t get done and I don’t need to be so rigid all the time. Our son can’t go to school, then come home and do a ton of homework as well as extra-curricular activities. So I need to just accept this and go with the flow.

This didn’t happen overnight. It took me many years to figure out. You see his life is not going to be any better or different by the vast number of tasks that he completes. His life is going to be better when he recognizes that he needs a mental or a physical break. He will be a better person when he is happy and can engage while not being stressed out. For him, this can look different on any given day.

I have also realized that it’s perfectly fine if I can’t do something as well. Our son may need help with homework, but if I’m not up for it, then it’s okay to wait until tomorrow. I’m not a robot and I also have my own limitations.

Living in a house where one child has autism and the other child struggles with anxiety and depression, sometimes just getting through the day is quite an accomplishment in itself.

We have realized that peacefulness in our house is as important as getting the laundry done. It has to happen for us to survive so we have to make this a daily priority.

None of this is easy especially when things have deadlines. The question I always ask (even with school deadlines) is what will happen if this is not done? In 10 years, will it matter? Does it really matter how much time is spent on homework or how much time is spent doing other activities? Does anyone look back and say that they wished their room was cleaner or the house was spotless? The simple answer of course is no.

But what children (and parents) will remember is the kindness and love in your home. They will care that you learned to be patient. They will also care that you taught them the importance of life which is not just about school, but is actually about people.

So today if you choose one new habit to adopt, try just having no expectations of your child. Try to look at them, I mean really look at them for who they are as a person and try to find one positive moment in each day to nurture that connection. I promise that you won’t regret it.

Happy New Year! I can’t wait to see what happen’s this year!

It’s been a whirlwind holiday season all around. It starts for us at the beginning of December and goes until “back to school” time which is next week in our house.

In the past, we have enjoyed the holidays, sometimes more than others. In the last year our family has had some personal health challenges, in addition to the usual things we experience with autism. These challenges have made us see things in a different way, with a “new set of eyes,” if you will.

We are more appreciative of our family time, our quiet time, and just enjoying each other’s company. We get busy like every other family, but we try not to pay attention to the things that we cannot control or that we are too tired to do at the moment. This year is the first year that we didn’t rush to put up the tree. Not that we didn’t want to, but our schedules were so hectic that we decided to be kind to ourselves and do it when it was right for all of us.  This was the first year that I did not send out cards and you know what? I didn’t feel bad about it. This year was much more relaxing and enjoyable and even though we didn’t get everything done, it was perfectly fine!

Sometimes, I dread the holiday season for a couple of reasons. In school, the schedules are different. Everyone is more relaxed, which is great, but expectations and schedule changes can make it hard for a child on the spectrum to deal with and added activities can actual cause more anxiety and stress.

Our son continues to impress me with each passing day. This year was his first year of high school so there were many changes and a whole new set of people to get to know. He was in an instrumental music class learning to play the trumpet and even though he was behind his peers, I was so impressed by all of the things that he had learned and accomplished in a short time. He is a very hard worker and he has to work ten times as hard as anyone else to achieve results.

Every day, faithfully, he brought his trumpet home and practiced the songs. He did the theory and although some of it he didn’t understand (I didn’t either) because there was a lot, what he did learn was truly remarkable. Does his playing sound amazing? No, it doesn’t, but he is able to play all of the basic notes and he is learning the different techniques to make the proper sounds. I am pleasantly surprised and so very proud at what he has learned so far.

It’s funny because it’s all in the way you look at it. I don’t look or compare him to his peers or if he is off-key or not playing in sync with others. I look at what he is doing and how much he can do compared to the beginning of the year.  His music class played a couple of songs during an assembly which I was invited to before Christmas.

As I sat back and listened and watched him, I had tears in my eyes because a couple of years ago, I never imagined a scene like this one. He was with his class, playing to the best of his ability. There was noise and lots and lots of people which can sometimes bother him and he was just a true joy to watch. This time, the noises didn’t seem to bother him at all.

I know that the teacher or others will never probably realize what a huge accomplishment this was for him — how far he had come and no one at school probably truly understands what an amazing person he has become.

As I sat in the audience, I was overwhelmed with true joy and happiness. This as well as the health of our family is truly the only gift I needed this season.

I hope you are able to celebrate your child’s amazing accomplishments whatever they may be and that you experience the happy times that we can all experience no matter how big or small.

As you look back over the holidays, remember those moments when you smiled!

Finding joy even in small things is the best gift you can give yourself!

I want to talk about impatience as this is something I’ve been constantly working on but continue to struggle with.

I don’t think I go through a day where I don’t have this feeling at least once. Impatience and autism are a very bad mix. When autism is involved, you have to be able to wait longer, do things differently and generally just have more time to deal with the regular issues that arise during the course of a day.

Without autism in my life, I would hate to see what my impatience levels would be. With autism, I feel as though I have improved by leaps and bounds in this area but I must admit I still struggle.

This time of year is especially hard when you feel like you have to do more things to get ready for the season in addition to what is already part of your day.

Our son usually gets up at 7:30 am and I drive him to school at 8:30 so he basically has an hour to get fully awake, eat his breakfast and get dressed.

This morning I was feeling anxious because of other things going on in our house (yes, it’s not all about our son!) I didn’t sleep well and I just felt overwhelmed. He came downstairs but it was taking him forever to eat. The frustration in me was slowly building as I knew we had to leave as the weather was terrible so I had the extra task of cleaning the snow off the car and shoveling the driveway.

Anyway, I just kept telling him to hurry up and eat a bunch of times. I could hear the frustration in my own voice and it was making me crazy.

I had to stop, take a breath and focus and remind myself of what was really important.

So I refocused my mind and tried to be kind and loving instead.

When you have autism in your home, you have to constantly make schedule adjustments and changes so that your family dynamic can stay in tact.

Frustration + autism = chaos and panic, but

Frustration + stopping and evaluating, taking and breath = readjustments and hopefully kindness.

Choose to be kind today.