Respect is the new ‘R’ Word

It was a beautiful day, the sun was shining and we were all outside having a good time. The kids were playing on the trampoline and my husband and I were working away on our trailer. 

My daughter comes into the trailer all upset. “The neighbours just yelled at us” my husband and I just looked at her in disbelief. What do you mean they just yelled at you? My daughter told us they told them to shut up. They are being too loud. 

Of course, that was a no go, my husband went over there and spoke to them. The neighbour said “There is something wrong with your child, I think he is ‘retarded’.

My heart sank. My son was in earshot. He heard these complete strangers call him a name. The heartbreak on his face was just devastating. 

Are they serious? Are they really upset to hear kids in the backyard playing? My mind was racing. How low can people be to call my child names? How low can people be to yell at children for playing in the backyard? I am disgusted.  

Growing up in the 80s the word ‘retarded’ was thrown around like confetti. It was the popular insult of that time frame. 

“I used the wrong font on my essay, I am so retarded” back then it just seemed to the best and easiest way people would use to describe when they did something stupid. 

Back then I would fluff that word off like it was just another word, it certainly never sat well with me, but I never gave it a second thought till I had kids. Till I had a child with special needs. 

Hearing this word now kills me. It runs through my body like a bunch of knives being throw at me. This word to me is a swear word. This word needs to go. 

Every day a mother was a special needs child struggles. We struggle with everyday living needs of the child. We struggle with trying to understand why our child, our beautiful baby has to have such a hard life. We struggle with how this is so unfair. 

“I think he is retarded” It’s just booming in my hears. At this moment I stop breathing. I wanted to lose it. The mama bear in me wanted to tear those people apart limb from limb.  My kids were watching me, like hawks. So I quickly scooped them all up and went inside and let my husband handle it. 

After everything settled down, it really sank in. I should have been harder on them, I should have stepped up and told them that the “R” word is not okay. Maybe they would think before they threw that word out there, maybe they wouldn’t, but I just wanted to get my kids out of that situation. 

My son who is 9 years old, has ADHD, High functioning autism, social anxiety and a learning disability. He is smart and funny and full of life. I wouldn’t change him for the word. These labels do not define him. When I look at him I don’t see these labels, I see my beautiful baby boy who makes my heart melt every day. 

Many people don’t see firsthand what it is like to have a child with a disability. I do my best every day to educate people. In hopes that one day these words that people throw around gets thrown in the garbage. That one day instead of judging from afar they would just come and ask questions. I promise you I won’t get offended I encourage it. 

Since my son is high functioning, just by looking at him you wouldn’t know.  Some people would think since it is not severe they have it easy. The reality is quite different. 

What people see in their eyes is a boy that has behavior issues. They just assume that he is just not being raised properly and that, of course, is all their parent’s fault right? This is what happens when you don’t ask questions you just assume. 

My son has extreme sensory issues. He does not like loud noises, crowds, extreme tastes like sour or spicy, bright lights or weird touches to things like slim.  

My son has no social clues. In his mind when he is having a conversation he has no idea what is a civil conversation or when someone is making fun of him. He has no idea what too loud is. He has no idea when it is okay to speak or wait his turn. 

My son has anxiety. When something is new he doesn’t know how to react to it. When something is changing he doesn’t know how to react to it. 

My son lacks planning skills. It is hard for him to plan, manage and cope with the tiniest scheduling change, in school and at home. My son can do many great things, but if there is an obstacle or something goes wrong. He doesn’t know how to handle the situation. 

My son has difficulty following simple instructions. My son CAN do a lot of tasks, but when told verbally, sometimes things get lost in translation. “Clean your room then you can play on your Nintendo” What he may hear is “Clean your room” or “You can play on your Nintendo” Breaking down how you word things with him really helps. 

To a person that doesn’t see these things first hand, to a person who doesn’t have these difficulties could assume these are things someone can get over. That these things are easily ‘fixed’ I promise you, these are not behaviour issues. These are his everyday struggles and will probably have these struggles for the rest of his life. 

This word is never okay to use, in any situation. This word needs to be wiped out of your vocabulary. Knowing 1 child with a disability doesn’t mean you know them all. It means you know that 1. Each child with a disability are their own person, they have their own struggles and their own gains. It is better to ask questions then just stare and make rude comments. 

Just because one child doesn’t learn the same way as other children, doesn’t mean there is something wrong with them. It just means that we as parents or caregivers or family need to find a different way to teach them. 

You as a parent will learn how to thrive and grow and change to understand the needs of your child. Yes, you will feel frozen at times, just know it will get better and it will get hard but you will figure it out. 

It is okay to feel sad. That your child will not have a ‘normal’ childhood. It is really hard, but know that you can make their life the best possible way to make sure they are happy and healthy and smiling. 

Be thankful for the little things. I am so thankful when my son puts his shoes on the right way, I make a big deal about it, “Amazing job buddy” Or when he parts with a stuffed animal that is broken because he gets so attached to things. 

Try not to read into what people say to you. I know it is hard and I find myself really overthinking what people say. You will find yourself annoyed with peoples positive attitude because it may seem like they are minimizing the magnitude of your child’s challenges, you may find yourself annoyed with peoples negative attitude towards your child because they don’t recognise your child’s progress.  

I am grateful for the times that we live in. There is so much new information out there that helps people educate. We now live in an age with the internet. We can now connect with other moms that are deal with the same things we are. We have support when we feel like we are all alone.  To share our experiences. 

My hopes are that one day, people will ask questions. My hopes are my son will not have to live in a world where people are so mean and so quick to say hurtful words.  

My hopes are that respect becomes the new “R” word.

Believe it or not

As a mother, when you hear the doctor tell you, your son has autism, ADHD, Social Anxiety and a learning disability your heart sinks. 

Was it something that I did wrong? Was it something that I didn’t do? 

Was it  because I let him watch TV when he was 2? 

All these things running through your head, even though you knew in your heart that something was different about him. 

While you try and convince yourself that he has all these things. I didn’t realize it was so much! 

You have to convince yourself and try to come to terms with all these new things that just got thrown at you, you now have to convince your family that all this is true. 

The constant “well he isn’t like that with me” “Wow I just don’t see it?  “Maybe he is just trying to get attention, with all those kids there you know” And the worst one “Are you sure the doctor wasn’t just saying that because they want money?” 

Well family; 

You are not there when he has those meltdowns because his schedule is slightly off. 

You are not there when he cries so hard before bed because he is scared he wont wake up.

You are not there when he says the most horrible things just to hurt me and I somehow have to figure out how to harden my heart because I know he truly doesn’t mean those things. 

You are not there when I ask him to do a simple task but then hits and kicks me and then tries to break down his door, then cries because he hurt his door. 

You are not there when he starts smacking himself in the head because he got a question wrong in school. 

You are not there when he gets so attached to a coat that you have to search every store possible to find the exact same coat and sneek when he is sleeping and change the coat so he doesn’t notice. 

When we are at family functions, we leave when he is about to have a meltdown. We watch the signs. We try to avoid as many triggers as possible so that we can all enjoy ourselves including him. 

You are not there doing a grocery shop, trying to figure out his meal plan because he needs to have different things in his diet to make sure that he lives the best possible life without having episodes. 

You were not there when I got the phone call that he tried to throw a desk and threw shoes at a teacher because she told him that he couldn’t do something. 

So yes, family. YOU might not see it, YOU might not believe it, but I can tell you with my heart that he is. 

Yes, he is the sweetest, most caring bundle of joy. With the biggest imagination possible. He is so smart when he is able to sit for more than a couple minutes. 

I am doing my best with this whole new thing. I just hope one day you will understand the lengths that I go through every day to make sure that you do not see it. That he has the best possible life. 

Check in on your kids

It has been 2 months, 2 months that we have been in isolation. 

2 months that we have not been able to live a normal life

2 months that we have not been able to visit our friends

2 months that we have not been able to get groceries the same way

2 months that we have not been able to just browse in the stores.

A lot of us have thought about all the things that we are not able to do during this time and we have thought about all the things that we are going to do when all this is over.

But have you truly honestly thought of how your child is feeling during this time? Have you honestly asked them how they are feeling? And got the real answer and not the “I don’t know” or “I guess it sucks?” 

We have praised all the front line workers, we have praised the nurses and the doctors and the ones that have been working still during this horrible time. I thank them! They are doing what a lot of us cannot. 

But have you praised your kids?

Change is hard for us parents, us adults. But can you imagine what it is like to be a child?

This is not like summer that a lot of people have been saying…. Summer you would be able to visit grandparents, go camping, see their friends. 

Summer vacation, their parents weren’t stressed about money, about if they are going to get the food they need without it being substituted or unavailable. 

There was honestly no way that we could fully prepare our kids for something that we had no idea that was going to happen. They don’t have the tools to understand or comprehend what is happening right now. 

They are going through all these new emotions, all these new things, all these new stresses that we were not able to prepare them for. 

On the outside they may be acting like they are okay, on the outside they may be acting like they have this figured out. I am willing to bet they are fighting some demons on the inside that we are not aware of. I am willing to bet they are scared, they are bored, they are going insane just like the rest of us. 

So I am asking you, check in on your child. Really sit down and ask them how they are doing. If they are worried to tell you how they are feeling, or struggle with expressing their emotions like my 9 year old is who has autism, get them to draw you a picture or write a story about someone else who is in isolation, their emotions will come out in that.

Isolation is hard on us, it is harder on them.

The little things

As a mom to a child with Autism and ADHD , It is the little things that I am most excited about, the little things that are normal to some parents but make us cry with happy tears when it happens.

When they eat something that looks a little funny and don’t get upset and throw it. Or when they come and say sorry for their outburst without you having to ask them. Or when you can walk into the store without them getting upset that you can’t buy them all things.

Sometimes I feel like I am not cut out for this. Sometimes the days just seem to hard. I make a list of all the things that I know will trigger a outburst and I say “yes i’ve got this” then something completely out of left field upsets him.

For those you just had their child diagnosed one thing I know for sure is that there was nothing that you could have done differently to prevent your child from getting Autism or ADHD. I am not going to lie those there will be stress when they have a break down in the middle of a crowded area there will be stares. There will be rude statements and rude questions. There will be people that tell you “wow your child needs to be disciplined better” When at that point when they are in full break down mode, discipline would be pointless. The ones that are uneducated about these things are the ones that will come at you worse. Don’t let them get to you.

The little things are what matters the most, when you are talking to them about something and they make direct eye contact with you! Which took so long for my son to do, a lot of work and training for him to do that. Those are the days hes having a good day!

My son is 8 years old, but acts like a toddler I promise you he is no toddler size. When he has a break down in the middle of store and you have to pick that huge boy up to get him out of the situation that he is stressed about, I promise you is not easy.

With my son everything needs to be on a schedule everything needs to go as planed if one thing is out of place or canceled that could be a big deal and cause a break down. You need to have a back up plan. So if something like Ju jitsu gets canceled you need to come up with another activity fast or already have one that you can do with them. With my son Ju Jitsu is his thing, he loves it. Finding a sport that he was fully into was hard, we tried baseball, soccer, basket ball nothing stuck… but when we found Ju Jistsu he was actually focused and excited to go.

On bad days, when something triggers in him. Honestly I keep saying outbursts but that doesn’t even begin to actually explain what happens. Something simple for example when I ask my son to clean his room, which is one of his triggers if you dont say it correctly “can you clean your room please” that would set him off. If you say “can you do me a favour and grab those toys and put them in the bin” That would be okay because he knows exactly where to start and what to do. But before I figured that one out we had some bad days. He would say he hates himself, and grab a toy and start hitting himself in the face with it. Grab his door and start punching it and stomping. He yells I am so stupid I can’t do this. I found out that telling him exactly what you want him he doesn’t get overwhelmed with everything. Instead of saying “Time to get ready for school” I would say “Can you get your shoes on” Or “Now get your coat on”

I get to those that don’t understand it sounds annoying to constantly have to be very clear has to what you want to get done. To me it makes perfect sense.

Its the small things that are important, because everything I learn something new, every day is another adventure or hurdle . But I promise you it is all worth it! .

What’s wrong with your son…

Those words have never been easy to hear…

“There is nothing wrong with my son” I would say in response to that question.

In the back of your mind you know that he is different then the rest of the kids.

He doesn’t sit still for a long period of time… He doesn’t do well in social situations…

He has these crazy outbursts that make everyone around you just stare in disgust or disappointment “why cant she just handle her child” because its just so easy for you to say Karen…

My son was diagnosed with ADHD, High functioning autism

and a learning disability do to those things…

It was hard hearing those words come out of the doctors mouth… I cried thinking “Did I do something wrong?” “Was it me that did this to him?”

Now I am here, in a territory I know nothing about “What are we suppose to do now?” Here I am doing all this research trying to find what tools I can use to help him. Meal planning, medication, therapists… it’s just all overwhelming. At this point i’m feelings really alone.

On those days where he is having a real rough day… when hes sock it just not sitting right and he screams and cries and calls himself “Stupid”or he says “I hate you” because I asked him to clean  his room. Those day’s where we are in the store  with all 4 kids and he really wants that one toy  and I say no, he screams runs away in the store everyone it staring. looking at you like you have two heads… Those day’s I feel so alone.

I know there will be day’s where I wont be able to handle situations, I know there will be day’s I will cry… But I also know there will be happy day’s. His smile, his personality, his laugh.. makes all those bad days disappear…

So to answer your question Karen  Nothing.. nothing is wrong with my son.. he is perfect… Perfect for me.