Blog

Home alone?

small child washing tiles in bathroom alone

So, if you have a typical child who is a teenager, the decision to leave them home alone probably makes more sense to you than it does to having a child on the spectrum while making that same decision.

I know that this kind of decision varies for many and many parents may have different views on this.

Well, if you had asked me 2 years ago, would I ever leave my child on the spectrum home alone. my answer would have been a clear and fast, “No!”

But today as I sit here, I need to tell you that I did just that, yesterday. Yup, I did.

Was this an easy decision to make? Absolutely not. Did I do it without thinking? No, I did not.

You see, even though sometimes I feel that our son’s progress is slow or at times non-existent, as I look back now and realize that I never in a million years thought I would ever do this. I guess I still had pictures in my head of when our son was younger, running and running and me barely able to catch up with him.

Fast forward today, it’s really a totally different story. For us, this gradually happened with very small baby steps. You see our son up until 3 years ago, would barely let me out of his sight. He got upset if I even took the dog for a walk, even when my husband was home.

So you may ask, how did I achieve this? Well, I had a plan, but it was very flexible.

There were times when our son was younger and he was at home from school ill and I couldn’t take our dog even for a short walk because I honestly didn’t know what he would do.

When we used to walk the dog together and he was on his scooter, there is a route that we take around a school close to our house as there is lots of grass around it, I would make him wait at every corner so that he was always in my eye-line. He would have to wait quite a few times and then as we would walk onto our street, he had to wait for me even though it is not very far.  This same routine went on for years.

Then a couple of years ago, I decided to loosen this restriction a bit. I would make him wait for me before he went onto our street so he knew he could only go so far and then he had to wait until I could see him.

Then this year, I just let him go around.  He knew the routine so he could do his scooter route, then go home before me, put his scooter back in the shed and go into the backyard and he did this perfectly every time!

Our son is 15 and his sister is 17, so this spring I left them alone together many times. Lots of times it would just be me going up to the grocery store at the end of the street or the drug store. Then I gradually ventured out to Costco (which is a lot farther) and I kept checking in with our daughter to see how things were at home.

In all of these instances, it went really well. I always told our son where I was going and when I would return.

This school year, when our son was at home ill, I would leave him and take the dog for a walk and I told him when I would be back. This was a good first test and with him being ill, the chances of him really wanting to do much was very slim.

Yesterday, I had to go pick up a furniture item.  I needed our daughter to help me lift it in and I knew there would be any room in the vehicle for our son as I had to put the back seats down. In my mind, I went back and forth with this. Should I try? I asked my daughter and she said I should. She knows him pretty well, so I trusted her judgement. We weren’t very far from home and he didn’t really want to come anyway. So I told him what I was doing and I also told him that his sister was coming with me and that he would be home alone.

Could anything have happened? Yes. Did it? No. It was risky for me, but I want to try do this more often. This is not a decision or something I will do without any thought. For us, this process is very gradual, but I will continue allowing him to grow, develop and become his own person.

If you think right now that your children will never get to this point, don’t give up. You will be surprised as they learn new things and face new challenges, how much really they can actually do.

It was a great day to be a parent!

 

Money

crop farmer showing money in green summer field in countryside

So, if you live in Canada, you will understand what I am talking about when I talk about autism funding.

So if your child has been diagnosed with autism, the government gives you a one-time funding which you can use for various different types of therapies or items that you may need to purchase for your child that enhance their growth and development.  Sounds good right?

Well, of course money is always good to have especially when you are dealing with anyone on the spectrum, but there are stipulations with this money — many, many stipulations and I guess this blog is to just vent about these hopefully not in a destructive way, but just as information.

So you have a child with autism, and you have a child who is typical. So you have neuro diverse and neuro typical. You have expenses of course for all children, that’s a given. But I really think that it’s unimaginable for someone without a special needs child to really, truly understand the cost of raising them.

Just to put into some practical terms for you. So you child wants to do martial arts, but being around a lot of people sets them off and they can’t focus. So now you have to register for a private class instead of a group class. You want your child to learn the skill, but your options are very limited. So you pay about 4 times the amount of money so that they can go to this class.

Your child on the spectrum usually has some kind of issues with food – whether or not they are allergies or not so you have to spend more money on specialty products. We have one that doesn’t eat gluten, soy, dairy, corn or processed sugar. Any items that you purchase in these categories are normally at least double the amount.

Your child may require assistive equipment or sensory things just to get through the day. So you could be looking at special computer, headphones for sure, weighted blankets, sensory socks – the list goes on and on.

You may need special supplements as we do for biomedical treatments. Our sons takes probably at least 20 pills a day just to keep him healthy. Are these covered by our drug plan? No, so all of it is out of pocket.

Other sensory sensitivities may be clothing or special shoes or detox items like a special footbath that we use on a regular basis. You may have to save up for these items as the footbath we purchased was over $3,000.00.

Other household things that are pure like cleaning products, soaps, toothpaste,shampoo etc.

I cannot list everything here, but none of these items is a “luxury.” They are all part of your daily life and they are needed.

So the government gives you money and for younger children who really need the therapies like ABA, it is extremely helpful and beneficial.

All the parents with children on the spectrum have a lot to deal with just to get through the day and then with the government you are trying to submit expenses that will help your child but some of the ones that should be allowed aren’t and to make it even worse, it’s hard to get them to put things in writing. I am part of a Facebook group and every day there is a post about someone who received funds but has to make many phone calls to find out if what they are purchasing is covered. You see, the list has a grey area open for interpretation so it’s not simple.

I had a phone call yesterday (they left a message) and I wanted to know about a particular sensory item. Even though in my email, I asked them to respond in writing they called which means later if you don’t have it in writing they could turn around and not cover that item.

I mean do they think we have nothing else to do? These are parents who barely get any time to themselves to begin with and now they have to do more running around before they can even purchase certain items to help their child.

Anyway, I am grateful for any help that we get, I just think it is so wrong to go after a very vulnerable population of people in this way. Just my opiinion.

If you don’t live in Canada, you are probably wondering, why I am complaining, right?

Schools done – now what?

painting and drawing tools set

So school in our house is officially over today! Yeah!

We had our last class meeting this am with all the teachers and educational assistants and it was really nice to see them after all this time of distance learning. You see our son just finished his first year of high school and there are many people involved in his education. Not only does he take 4 different courses, but he also has different EA’s that help him and a few other people with classwork.

It’s definitely been a challenging time for everyone involved.  The teacher’s, the parents,the support staff at school – all of them. I think everyone did their very best to adapt to the current situation and I would say for us, it’s been successful!

I always push our son to reach his maximum potential and I probably push way harder than any teacher because I know what his is capable of doing. So I am sure that he would much rather be in school than at home learning from me. But we have both learned a lot through this process.

We’ve had some bad moments of course, like anybody else. We’ve had days where little work was accomplished and days where lots got done.

I think what I enjoyed most about this experience was the connection that we made through learning. I actually enjoyed learning some of the materials as it took me back to my school days.

One thing that we both improved upon throughout the course of the few months was video taking. Every week we would get the lessons and then I would try to figure out the experiment or the material of how we could actually make it fun! Then we would do a video once a week where our son was able to demonstrate the knowledge that he learned through practical application.

At first, I wasn’t so great at doing the I-Movies, but as the weeks went on, I learned more and more about this and was able to make the videos more exciting! I still have a few things to learn about this medium, but I am pretty happy with some of the results that we achieved together and so were all of our son’s teachers! It also gives them a glimpse into his life that they may not have otherwise known, if they had not been able to see this.

Our daughter did her very best during this semester as well. She had many challenges  mentally and this made some of the tasks extremely difficult for her, but she got through it and she will be getting all of her credits so that is very important to her. She is capable beyond her years of so much, but there are always many roadblocks in her way. I am very proud of everything that she had to juggle to achieve her results.

I have never been a parent that talks about how high your marks have to be or ask why didn’t you get that particular mark because I believe that both our children put in hard work and they work to the best of their given ability and that’s all I can really ask for.

Onto summer now! Looking forward to doing some fun activities and spending lots of time outdoors!

Another Autism Diagnosis – Now what?

pink pen on top of white and black book

Three months ago, we received another autism diagnosis in our house. This time it was for our daughter who just turned seventeen.

We had been dealing with some difficult issues for a few years now, but the past year has been the most difficult.

With teenagers, you always expect ups and downs. She definitely had a lot more of the downs.

She has been struggling with depression, anxiety and panic for a few years.  We had been doing all the things that we thought were right, but the issues didn’t seem to be going away, in fact, they were getting worse.

We were frustrated, but we did whatever we could to help, including many, many appointments to psychiatrist, psychologist, medical doctor, dietitian, OT, you name it, we saw them.  Sometimes, we couldn’t get her to all of the appointments between work schedules and school pick-ups, but we were lucky to have my Mom helping us with this and other people when we needed them.

It wasn’t until a recent in-patient program at the hospital that we received the news that she was on the autism spectrum.

There seemed to be way too many questions but not a whole lot of answers. As parents we didn’t know how to feel or what to do. I mean we had been dealing with autism in our house for so many years, you would think that we of all people would be able to pick up on this. Why didn’t we? What happened?

Well, you see our son’s autism is different. He was born prematurely and he started off his life with delays so we were attuned to this from the very beginning of his life.
With our daughter, her autism is classified, if you will, HF Autism, which in layman’s terms means “high-functioning autism.” Personally I hate when things are categorized in this way because it makes one child/person sound better than another and that should never be the case. Both are equally important and carry their own unique issues and challenges.

Now that I have two that are totally different this has never been more important to me.

For most, it’s just simply a way of identifying issues unique to that person, although in my opinion this doesn’t work too well.

Our daughter has a high IQ, which I think is part of the reason that this was never detected before. She was going through life and was able to talk her way out or through situations and converse with people quite easily. It wasn’t until the early teen years that we started to see social problems. Then came depression, anxiety, panic attacks. All of this just kind of happened over a period of time. We were dealing with so many “professionals” but even though at one time a couple of years ago, I suspected this, they ran the tests and said that she was not on the spectrum.

Let me tell you this, always trust your gut. I have discovered through my extensive list of professionals over the years that they are just people. If they are not on board with my vision, or they won’t listen to me, or dismiss what I am saying, then I’m not spending our hard earned money at that place. Believe me, we’ve had some like this in the past.

When I first heard the words in January, I honestly don’t know how I felt. My husband felt relief because at least now, all of the other things she was diagnosed with finally made sense, which I agree. But I also felt sad, cheated, and perhaps partially responsible for it taking so long to come to this conclusion. I think back to some of the things that she did as a child like talking more to adults than to kids, going over the top on almost every task she took on, obsessing over different things. I believe I missed it.

I looked at her now in a different way, I guess perhaps a more loving and understanding way of the difficulties she was experiencing and what was going on in her brain.
I also was very relived that now all of her symptoms would be under one umbrella, one contact place to deal with all of the symptoms, medications, everything.

But, as I sit here today, honestly, it’s overwhelming…..the issues are quite complex and there’s a lot of them to deal with. I have to breathe and rely on my patience to adjust.

For now, we will take it one step at a time, one moment at a time and try to unravel everything for as long as it takes.

This faces us with new challenges as a family, but I’m grateful that I have lots of experience already dealing with autism.

With the new normals and new circumstances related to this new diagnosis, we will continue to find ways to help both of our children be the very best that they can be. Because that’s all we can really do as parents.

 

 

 

 

 

 

 

Teacher/Mom – How are we doing?

woman in red long sleeve writing on chalk board

I have pondered this question over the past few weeks while navigating the whole “school at home” concept.

Some days I have different answers than others. Honestly, there are days when I feel like I have made a breakthrough in learning and then there are other days when I don’t know what to do so that my child understands the concept and this usually ends up in frustration.

It’s hard to gauge how long it is going to take to do the work each week and how to spread that out over the entire week.

When we first started, I thought that we should go by a schedule and try to do things very methodically. We first started doing one subject a day and trying to get everything that was required for that subject finished before we moved onto the next one on the following day.

The first month, honestly, we finished the work far too quickly and then we had extra time at the end of the week.

Now that we are more into the groove, I have scrapped all schedules and expectations and order for the work that needs to be done.

When we get all of the work each Monday morning, I usually look over all the work first to see if I know how to do it (yes, there are things I don’t understand) and then try to figure out how to teach the concepts or the approach that I will take so that my child will understand and be able to retain some of the concepts.

In our house, we don’t set the alarms to get up. When the kids wake up and get going, that’s when we get started. We have all day so for us there is no real requirement to keep in the normal time frame of school. After all, we are at home and not school and nothing I do will create that environment.

My son learns best when he does things hands on. Now for all of his classes it is sometimes hard to do this but where it is possible, we try to make this happen.

He loves doing experiments and crafty things so we use these methods to reinforce some of the concepts that he is learning. I have to admit that I need to really pay attention and think about what we are going to do and how we can solidify these concepts.

We started a few weeks ago making a video each week of one of the concepts that has been taught. This has been fun and challenging because we need to plan out the steps for the video and then decide how we will proceed. We have made a volcano, a topographic map, playdoh, a tactile map of land formations to name a few.

I thought from the beginning if the teacher could see on video how we are re-enforcing the concept, it may give them some ideas at school on how they can capitalize on the way our son learns.

The teachers loved the videos!

In fact, each week they now request one from us and that gives me time to also figure out how to make our video better each time so I am learning as well.

The videos are also a fun activity that we can do together and our son loves watching himself in these once they have been completed.

I have also implemented “Fun Fridays.” So we try to get all of the work completed within the 4 days and then Friday we designate as a Fun day where our son can choose activities that he wants to do that are not school related. We have done outside activities, random crafts, baking and lots of other fun things.

So all in all, in the midst of this pandemic I thing we are doing pretty good!

How are you doing?