Why we can’t talk about Anything anymore…

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I love hearing other people’s ideas, thoughts and suggestions. Why? Because I know that maybe, just maybe I don’t know everything about everything… I know shock right? There is so much to learn from other people and I think we can learn a lot more from people than we would from books (that was painful for me to say… as I love my books).

I am going to be honest… I had a strange weekend. My son, who has sensory issues was quite highly strung and I was having to use a lot of patience being able to work with him. He was discussing his goals with me about wanting to make $10 more to pay for a LEGO set he had wanted. I told him how I could not give him $10 in one day for chores… I was going to suggest other options but instead he reacted before I could get there – strongly. His words were “You don’t care about my goals, or that I would like to try to buy Continue reading “Why we can’t talk about Anything anymore…”

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Look for the silver lining…

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Yesterday I had a bad day, A very bad day.
I was not my best because I had an infection which led me to a last minute appointment with a dentist. I know when I am about to battle a flu or an infection because I get angry. I am not an angry person by nature. I think (if I asked my friends) that although I am open with my emotions –  that I reason things out with a lot of logic (hence my love for Mike Rowe), and think about consequences and put things into perspective. So for me to be unreasonably angry is a big red flag – which often indicates some sort of illness. When I realized I could barely chew food, I made my way to the dentist with children in tow. I had already given myself a horrible guilt trip because I had yelled at my children for stupid reasons – something I don’t do. I had yelled a lot. A lot. So once I realized it was because I was unwell I had been able to put it into perspective and as I was driving to the dentist I apologized. They were immediately forgiving… which was undeserved.
I didn’t realize how long it had been since I had been to the dentist. My kids went 6 months ago but I have not. I realized this when the dentist I had been to for almost 14 years made me fill out a new patient form.
I saw a dentist  I was not used to, and apologized. I knew it had been long and I felt embarrassed. I was anticipating being told how bad my teeth actually were. And so that happened. BUT- the dentist did not stop, it was lecture after lecture as if I had never brushed my teeth or been to a dentist and I grew up in a cave. I wanted to tell her what had really stopped me from going to the dentist – which is kind of hard when they have dental tools in your mouth. I tried to explain my health problems had taken priority and I had been in the hospital – so my teeth weren’t the first things on my mind. She then asked if I ate a lot of sugar – I explained I had suffered from major fatigue with these health problems and desperate for energy and knew I had eaten a bad amount of sugar to try to keep up with life. With all the guilt tripping I couldn’t tell her the truth. The real reason for keeping me back was financial. It was not safe to say

“Well, my husband has been unemployed twice for long periods of time and is now only making just enough the threshold where we don’t qualify for benefits. On top of my children suddenly having growth spurts and I was only finally able to buy them two outfits each (they are on rotation) and somehow paying crazy amounts of money for my teeth had not made priority.”

Also, as anyone knows that has struggled financially – there is a lot of guilt as to what you wish you could afford. I couldn’t explain how there are days where my knees go weak feeling overwhelmed with what little money we do have – and there are times I feel like I cannot take another step with this burden. I couldn’t tell her that. Yet she kept trying to explain how bad it was that I had neglected to come in. Do I need that guilt? No. Does anyone really need that guilt? nope.
I had incorrectly guessed how much it would cost. Turns out my whole week’s worth of groceries – food I try to keep on the table is gone… and when I was asked to pay. when they told the amount it took everything in me not to start crying. I only kept it together because my kids were with me. I am so glad I spent a week’s worth of groceries to be told what a horrible person I was because my teeth aren’t perfect.
I had a headache and felt quite ill after when I got home. My sensory child decided that that was the time to  have a meltdown. I tried to do everything I could to make him stop but in the end I couldn’t and his screaming caused my seizures to start – so I made my way to my bed (as I don’t like the children to witness them) and closed the door and tried to just relax. I left my sensory child with my daughter, which also made me feel like I had failed as a parent.
I could hear my daughter, and my sensory child stopped screaming almost as soon as I got to my room. He was even laughing.
It hit me there was a silver lining here, that even though I had felt like a failure, through health, and parenting, that I had a daughter who was able to settle the situation in seconds. Not only that but she attended to me. She gave me encouragement and told me how much she loves me. I never asked for this… I didn’t tell her to do this. She was absolutely amazing. Her ability to settle a stressful situation was beyond what a 10 year old has the ability to do. I told her how Proud I was of her that night and she explained how she had distracted my sensory child with all the things she could think of that he loved.
A woman that I know who has MS told me not to be scared when I first had health symptoms – and young children. She said

“If you saw what a better person my son has become since I got sick, you will see that there is no reason for guilt, that children learn amazing skills when their mother is sick.”

I didn’t believe her until yesterday. I now know that is true. My daughter has peacemaking skills that no school could teach her. Maybe the bad day was worth seeing the light in someone else.

Finding a way to make an obstacle your advantage? Check out The Obstacle is the Way by Ryan Holiday. 

To Those Mothers

 

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We all have those days.. especially as a parent where we feel like we failed. Today was a particularly hard day for me being that I had both of my children have difficult days as well as a husband who struggled with some challenges at work. However there are the mothers that struggle ‘a tad’ more. Those are the mothers with children who require that extra work. I have a child that may be on the sensory scale when it comes to challenges (although some have mistaken him for being autistic) but he is not on the Autism spectrum. This week – memorial day week – reminds me of the mothers of Autistic children. Why?
I was 12 years old when my nephew was born into this world. I was closer to him in age than I was with some of my siblings. May 31st is my nephew’s birthday. I remember feeling so overwhelmed with happiness when he was born as he was my parents first grandchild and I was the youngest. I thought of him as that younger brother I always wanted. Then the confusion set in when I came home from school to be told that he was “different”. We later found out he suffered from a brain hemorrhage at birth. Despite passing all sorts of milestones – I remember him losing a ‘normal voice’ and his giggling personality to autism. I don’t talk about it because I feel guilty. I feel like I have no right to feel upset or angry or sad about what has happened to him as he is my sister’s child, not mine. She has to be the one that deals with the most on all of this. I may have lived with him when he was little but she has spent every day living with him and the unpredictablity, discouragement and appreciating the little things.

I am still surprised when I come across people who think “Autism doesn’t exist” or “the child wasn’t disciplined enough”. I know from first hand experience this is not the case.

There are bad statistics for mothers who deal with severe autistic children. They have to do with the success of their marriage and their health just to name a couple. This makes me concerned for my sister, but makes me think of the’ general Autistic community’ and the EXTRA stresses they carry each day.

I know as an aunt there are times I treasure. I know my nephew doesn’t like to be touched much but I have sat in silence with him and he has laid his head on my shoulder. That day makes me happy.
The day where I hadn’t seen him in years and wasn’t sure if he remembered me – and I walked into his room only to have him tell me to “come here sweetheart” in the most excited voice as he hugged me.
These moments I can think of and remember knowing they are not the norm – they are the exception. I remember when I was younger and my nephew lost it when I was in a van with him. He had to be warned the indicator was going to come on to turn and even when he was warned he still protested the sound of the clicking of the van.

It also makes me wonder about the people who lose it with road rage when someone doesn’t use their indicator – is there a possibility that a driver is weighing up whether to upset their autistic passenger with the noise of the indicator or someone outside the vehicle with road rage.

Mothers of autistic children know there are so many more things they have to pre-plan  and worry about with such unpredictability of knowing that no matter how much you plan there is still something small that may cause a national-sized meltdown.

So with this I just wanted to write something small – and not even close to measurable in honoring those that deal with this stress everyday. This is the weekend that I think of you, and consider the stresses that are on your shoulders, and hope and pray that there is someone near and dear to you that can help relieve some stress.

I hope you have a chance to take some time for yourself this week. Take care of yourself because there is so much on you. You aren’t alone.

Jen

Why Australia needs Koosh Balls.

koosh So my son has sensory issues and for a long time I was thinking how much he would love a Koosh Ball. I looked everywhere for them, and assumed they just weren’t made anymore. I assumed they were one of those “vintage toys” that had to make a comeback someday – like everything else.

I remember them quite vividly as a preteen/teen in America and it was just naturally part of our existence. I remember everyone having one and we would play, throw, and just enjoy the sensory experience of touching it. So I guess this was the sort of thing I first thought of before the fidget spinner (however the new LED ones look amazing) became so popular!

In this regard I assumed all my Australian family and friends knew what it was too and that it was just accepted that these were no longer made – until a certain Jimmy Kimmel and Justin Timberlake skit.  I giggled and showed my husband who turned to me and said “What’s Koosh?”. WHAT???? “WHAT??? So I was like “you know, Koosh balls“. “He just shook his head and “nope”. So I had to google it – sure enough this lovely little gem is still very much alive and selling in the United States – so why the heck is it not down here in AUSTRALIA??  I found it on an Australian online “therapy” store (which happen to be “out of stock”) but I thought how can this not just be in every single store in Australia? We need it! Don’t even get me started on the fact that Australia does not carry Candy Land (which I desperately looked for when my children were 3 and 4 – tried ordering it online and again “out of stock”).
Please, American companies, please branch out and sell some of your product here, or someone with a decent warehouse in Australia need to think about becoming distributors! I would do it if I had a warehouse! There are quite a few other things I wish would make it down here to Australia if I had my way (and if anyone reads this blog besides my mother).
The I HEART GUTS is also a company I am desperately sold on (being a regular hospital visitor). Anyway… If anyone has a good business sense and would not screw up the bringing of a few of these products to Australia – PLEASE do so, or I would even be happy for someone to mentor me to do it myself!
Koosh Balls and I heart Guts, this is just a sample of wonderful products that I believe Australia would eat up, not just for “therapy” or “hospital visits’ but for education and fun! Plus – my husband needs to be educated on how fun these toys are (and it’s extra fun when all your friends own them too. We don’t want to be the only ones with Koosh Balls on the street).

Anxiety about returning to school:

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My sensory son returns to school on Monday, starting Grade 3, and with most children who have sensory problems, he has a lot of anxiety about it. We have a new Occupational Therapist who hasn’t quite gained his full trust yet, so he did not express all of his concerns to her in our introductory session.

With his previous OT she had him write out a list of things he’s excited about and things he’s worried about when returning to school. Most of them are the usual things that a child may be worried about: New Teacher and different students. Some things he is excited about is that he has his cousin in his class, and he is also excited to get to know the new teacher even though he’s worried about it too. He was so attached to his grade 2 teacher that when we had spring break last year, he had to message her – a lot…. and being the amazing teacher she is, she still responded (on her break)!!

As he is extra sensitive to sound, he has been put with a teacher this year that has a reputation for never yelling (how on earth does she teach so many children without yelling?).

I find though, that I have more anxiety than he does. For one, I know he doesn’t get invited to Birthdays (even though he’s great at birthdays, there are few parents willing to risk it), thinking he’s going to have a meltdown. He’s actually a pretty awesome guest because he gets really excited for others opening up their presents… and does anything he can to make the birthday child feel extra special. I also know there is one child that says if any other child plays with my son, that they aren’t in his group… so some children are pressured to not play with my son. This breaks my heart.

The sad part is, my son is a super loyal child who is very protective of his friends but has meltdowns every once in a while when noises get too loud, or too bright, or he is teased. He is working on these meltdowns but my anxiety is that there are parents out there that don’t teach their children how to include children with differences. I have a child that not only has to deal with not being able to control how much the noises hurt him or the lights hurt him, but also that he is rejected for something he can’t control.
The great thing is that most parents and teachers, and OTs and any other staff member that works with him tell me how he has such incredible skills of caring for others and brightening up their day. I also know that there are a few children that do look out for him, who have purposely been put in his class.

So we are returning back to school, and my son has so many tools to help him, his ankle weights, his special wedge pillow to help him sit still, weighted blanket, noise cancellation headphones, a cold smooth stone to hold – but  there is no one who has more anxiety than me, the parent. I am not sure what tools I should use for ME but I am hoping that this year will be better than the previous years, and that maybe he will be included a little more this year.  Sometimes when you have a child like this… you are thankful for something as small as your child finding a friend.

 

How this exercise can help your child with their emotions

 

colours

So my sensory son has benefited greatly recently from a major exercise from his Occupational Therapist. It’s when we assign colors to emotions.

  • Blue represents sadness, or sickness, feeling unhappy, or things that make you unhappy.
  • Red represents anger, Yelling, screaming or anything that upsets you greatly.
  • Yellow represents that moment before anger, feeling annoyed – or even feeling silly, on the edge, or recognizing something that may annoy you.
  • Green represents happiness, joy, anything that helps you feel good about yourself.

My son, who isn’t very understanding about his emotions but is very visual can understand this explanation of feelings so much better than just labels. It helps when we are in public too, where I can say “I can tell you are in the ‘yellow zone’, what can we do to get green again?”

I’m an auditory learner, and to me this was very silly at first but it really works for children who need extra help with their emotions and are visual learners.

We then have asked him many questions (when he is in the Green zone) of what makes him feel green… if he is in the yellow, what can he do to help himself get to the green.

He has come up with exercises on his own, but the OT has helped him understand about counting, and pushing against the wall, breathing exercises- tools he wasn’t aware of, that has helped him.

Other exercises he has included is “getting a drink of water”, “going for a walk” (which he is allowed to do by most teachers), to help him stay calm. HE is also a big fan of drawing, and even drawing out his feelings is easier for him than expressing them in any other way.

We have posters around our house of “expressions” of people in each of these zones so he can recognize them in himself (and others) a lot easier.

He is soon to start Grade 3 on Monday, and I as a parent has a lot of anxiety about starting with a new teacher and knowing how much it takes for him to adjust so we are revising these colors so much before then.

Let me know if you have a similar method or something else that helps you. We need all the tools we can get to cope and adjust to this world.

God Bless

You are a warrior!

This is my new motto.

We had a difficult day today. My son, who has sensory issues had a couple of meltdowns (in public) but the other difficulty is that I still have a few family members who don’t handle it well.

I cannot explain the frustration and I also I cannot explain the pain of feeling so alone with dealing with so much emotion each day.

I did have a moment when I felt the situation had settled but my emotions and nerves were still upset. I purposely took myself to the restroom, looked myself in the mirror and said “you are a warrior! You can handle this. You are strong”. I know we live in a world where we are to be in touch with our emotions and feel the depth of our reality but for some of us, if we did that, there might not be an end to the tears. So in moments where I have no choice but to keep going, I remind myself that I am a warrior, and that I have all the emotional tools to handle any situation that comes along.

So if you find yourself in a difficult reality, please keep telling yourself to keep going. You are a warrior!

God bless and be better!