Rest

Resting is an important part of life. Think about how you feel when you don’t get enough sleep. Are you able to function? I know that I’m not. Think about how your mood is affected and how you get through the day. How much sleep do you get each night? Sleep is so important for everyone.

For people on the autism spectrum, sleep is usually an issue. From getting to sleep to staying asleep can affect a person’s ability to function properly and to just get through a day.

This summer has been nice for both of our children in this regard. They have both had the opportunity to catch up on lost sleep and to be able to get some extra sleep and just rest their bodies and minds.

Rest is truly one of the most magical things in the entire earth – at least that’s what I think. Just being able to “be” in the moment and to relax is amazing.

I have found that irritability is less, frustration decreases and just being happier is so much easier with the proper rest!

We are constantly going at 500 miles per hour all the time, myself included, and we just never stop to rest. Sometimes when we put on head on the pillow at night our mind is racing with all the things we didn’t get done or have to get done the next day. For people on the autism spectrum, this can be a recipe for disaster.

For our family, summer is an important time to rest and just be as much as we can. It’s not always possible to do for a long period of time but it is important to take the time, any amount of time, when you have the chance.

Places for some people help aid the resting process. Our children both have different issues if they get too overwhelmed with pressures from their daily lives. It can be in the form of mental breakdowns and physical ones as well. The anxiety that both of our children can exhibit can be heartbreaking to watch and try to help them resolve.

Resting for our daughter, is about focusing on her art that helps her get into that mindset. For our son, going to the cottage and doing outdoor activities helps him free his mind so that he can rest and not have so many things going on in his brain that he sometimes has a hard time dealing with.

Breaking from a rigorous routine, even if just for a short time, is so very important for both physical and mental health in my humble opinion.

So whatever you can do to find some rest or whatever you have to do to help your kids on the spectrum break from the routine and just be able to rest their mind, do it! You will never regret it.

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Vision therapy

So we started vision therapy about 3 weeks ago. You may ask why? What is vision therapy? These are questions that I asked as well before I knew anything about it.

I discovered that there was some vision issues with our son through another therapy that we are currently doing. I had filled in some forms that the lady that I was dealing with had asked me if we had ever had our son’s eyes checked. I advised her that we had but I also discovered that by doing this, it was not enough.

Apparently our son as a visual motor deficiency in eye teaming and eye tracking. His official diagnosis is Oculomotor Dysfunction, Accommodative Insufficiency and Exotropia. I know it sounds long right?

Anyway, he needs what they call vision therapy to retrain his eyes. I honestly had never heard of this before, but I am truly finding this very fascinating as we progress with the therapy.

Unfortunately these lessons are expensive and of course, not covered by our health plan. My husband says I always find things that we have to spend money on, but honestly, that’s not true. I find and research things that will benefit health and to me that is the most important thing in the world.

Some of the things that I have learned in the past few weeks is that our son doesn’t have the visual perception to always see where a ball is. So for example, he does some exercises, where he has this long stick where he has to make contact with this ball. This could be why in some of these sports he was not able to participate successfully because of his perception.

Another thing that he has done in therapy is touching this big board with these special glasses on while points light up and then he keeps going and the therapist switches the glasses and he does this with both hands (one at a time).

He also has to read different eye charts touching different colors with one hand then with both hands.

I still don’t know what the “end” goal is but I am hopeful that we will see some good progress once these lessons are completed.

It’s really quite amazing the way our brain works!

The Future

Do you ever think about the future? I mean everyone does, don’t they? Some of us think about tomorrow, what we need to do or next week or even a few months down the line, especially if we have something that we are really looking forward to.

I think I probably speak for most parents with children on the spectrum when I ask, Do you ever worry about the future? As many people get older they think and plan as best they can for things to come and they may even make funeral plans or financial plans. That’s probably pretty normal for the average person to do.

When you have a child on the spectrum, I think you worry about a future that does not include you. You may worry about who will look after your child when you are no longer here. You may get upset about this, grieve this or even wonder if your child will be okay and what their life may look like when you are no longer around. These thoughts can be all-consuming and even destructive, if we let them.

We have done some planning as a family. We have a will in place and many of the financial aspects. We have guardians who will take over our affairs and look after our children if we are no longer here. But where does the worrying stop? What if something happens to these people? What if my child ends up in a place where they are not treated well?

Another set of questions may be, will my child be able to live on their own and hold down a job? Will anyone care? My child doesn’t understand money, who will help them?

Will my child be happy?

Believe me I have pondered these and many, many more questions over the years. This is a tough one and I think that it looks so different for everyone. We all come from different sizes of families. We all have people we are close to. Our children all have unique, individual needs. I read comments in autism groups on Facebook all the time where people are stating how much they worry about their child’s future.

For me, we tried to plan the best we possibly could. We have a will, we have family members who are willing to step in and take over and we have close friends as well as our church family. We just have to do our absolute best to have the things that are important in place. That’s all any of us can do especially since we can’t predict the future.

My husband and I try our best to promote independence in both of our children and we keep preparing them the best we can every day.

Isn’t that all any of us can really do?

I would love to hear your thoughts on this subject………

Until next time……… take care!

Biomedical – an ongoing journey

So if you have been reading my blogs for awhile, you will know that we have done a tremendous amount of work on the biomedical side. As I have stated before, my belief is that autism is not a psychological disorder as mostly perceived by the world. There are many facets to the physical component and these must not be ignored. If you feel better, you can learn more. If you have pain or allergies or other things that inhibit you from going about your day, it’s no wonder that many people on the spectrum have what is just perceived as a behavioral issue.

I am not here to tell anyone that they are doing something wrong, that is not my purpose. I can only share what I have learned along our journey and hope that it opens up doors of communication that people may want to consider having with their health care professional.

I can tell you with absolute certainty that biomedical treatments have changed our lives for the better. I am so grateful to our functional medicine doctor for his continued insight and guidance along the way as well as dealing with me and my many questions and concerns.

Right now, we are in a pretty good place of maintenance. However, our son cycles through constant candida (yeast) flare ups. We don’t know why this happens, but it seems like environmental and at certain times of the year this worsens. Right now he is on an intensive protocol of getting rid of this through some antibiotic and some other supplements. He has had a lot of stomach pain and cramps as well as irritability the last 2 weeks from taking these medications. It’s sometimes frustrating and hard to watch him manage his symptoms, but knowing that in the end he will feel better is the consolation.

We have seen so many life-changing gains along the way that even though right now is a bit of a rough patch, we will power through and continue on.

I am grateful for our doctor as well as for all of the support from our family on continuing our journey to wellness!

Communication

photo of couple talking while holding laptop and ipad

Communication is a tough word, especially if you are on the autism spectrum. Depending on the struggle, a person may have trouble with verbal communication, stating what they want in words or they may have trouble explaining what they mean to someone.

Communication is also tricky for parents of kids/teens on the spectrum. I have found that I have to make endless explanations to people about my children, from defending them to explaining something to someone who just doesn’t get it.

I have also had challenges just communicating with my children individually. This can be anything from understanding actually what they truly need from me, to understanding their feelings, to just talking about simple things in general.

I also have to constantly communicate with teachers or other indiviuduals in their lives.

With teachers, it’s complicated. In high school, there are 4 different teachers each semester as well as for our son, sometimes 4 different educational assistants. It’s a lot to keep track of and to make sure that everyone is informed and that we are all working together as a collaborative team to make sure that our son achieves his educational goals. This is much easier said then done, especially when dealing with multiple personalities.

Sometimes educators do not know your child so how do you handle this? It’s tricky for me for sure. I try to stick to the facts but I also want to make sure that they understand his needs and where he is heading in the future.

Our daughter is in first year university, so communicating as a parent is pretty much obsolete. The only thing that I can do in this instance, is to make sure that she gets connected with the right people and encourage her to communicate and advocate for herself. This is a lot harder to stand back and watch, I must admit.

Whatever may be your communication style or barrier, I think that it is important to be as open and honest as possible without offending anyone.

What is your style of communication?