Tag Archive: autism


I came across this and figure it’d be a good reminder with the holiday season about to ramp up.

 

Originally written by Heather Boorman 
And can be found here:
5 Ways Friends Can Support Parents of Children on the Autism Spectrum

 

“I know many of us are probably glad to have another Halloween behind us and don’t really want to revisit the holiday for another 360 days (or in three days when our kids start planning what they’re going to be for next Halloween). Bear with me, though. This story does include Halloween, but it isn’t really about Halloween at all.

My husband Jon and I often work opposite schedules, and Halloween 2016 happened to fall on a night when I was parenting solo. I mentioned this to my friend, Rachel, who immediately invited me and my three kids over to eat dinner and trick-or-treat with them.

About halfway through dinner, I could tell my daughter KBear, who is on the autism spectrum, was getting overstimulated. About three blocks into trick-or-treating, she said her legs hurt. About three-and-a-half blocks into trick-or-treating, she said she wanted to go back. My 11-year-old and 4-year-old were nowhere near being done.

Before I even had a second to fret about what to do, my best friend came to the rescue! I’m pretty sure Rachel was wearing a cape and there was a superhero anthem playing in the background as she leapt in and calmly asked KBear, “Would you be OK going back with me? I think the baby’s had enough, too, and we can just go back and relax.” KBear slowly nodded her head and journeyed off with my friend. My shoulders dropped, my mind eased, and my boys and I carried on and stayed out as long as they wanted to.

I remember the first time KBear had a meltdown in front of Rachel. I wasn’t sure what was going to happen or how my friend would respond. I heard her son ask questions and express uncertainty about what was going on. And then I heard my friend calmly explain to her son, in a nonjudgmental and totally compassionate way, that KBear has some differing wiring that can make it difficult to control her body and emotions sometimes. I heard my friend help her son relate by bringing up examples of moments when he had felt out of sorts or overloaded. I heard my friend calmly ask what she could do, what would be helpful, and I saw her patiently sit with calmness, acceptance and love. She occasionally asked if there was anything she could do and then refocused attention off KBear’s meltdown by quietly entertaining the other kiddos. After the meltdown, my friend hugged me, told me I’m a good mom, and reinforced that she’s here for whatever I need.

I am tearing up now as I write about it. Why? Because I feel she was perfectly supportive. Because so many people respond differently. Family, friends and strangers oftentimes back away. Occasionally, they’ll stare or say rude comments. Sometimes they’ll give unsolicited advice. And I get it. Many people don’t know how to respond. Most often I don’t feel like I know how to respond, and I do this every day. How can I expect other people to understand and know what to do?

I didn’t realize just how much I was missing the type of support my friend provided until she gave it to me. I know my family and friends are there and would do anything to help, but I didn’t even know what would be helpful to ask for. They regularly ask what they can do, or tell me they don’t know what to do. And until Rachel intuitively showed me, I couldn’t put words to what I needed.

So I’ll use Rachel’s beautiful examples to highlight what I, and possibly other parents, would find helpful in the midst of a meltdown.

1. Respectfully taking initiative. One of the things I appreciate most is Rachel respects my role as the parent and follows my lead as I’m dealing with KBear, but she simultaneously steps in to simply do the other things that need attention. She entertains the other kids. She continues making the snack. She provides quiet space. In the midst of managing a meltdown, my mind is working fast to try to address safety and emotion regulation. I cannot always think beyond the immediate risk to provide direction for all the other stuff. It can be helpful when others just take the lead on those.

2. Occasionally asking if there’s something I need. She doesn’t ask too often, which I find helpful given my state of my mind, as described above, but every once in a while I’ll hear a simple, “Anything you need?” It reminds me my daughter and I are not in it alone. It gives me the opportunity to ask for something we’d need without having to take my full attention away from my daughter.

3. Validation. As parents of children on the autism spectrum, we sometimes live in high stress. We often need to simultaneously plan everything out and be prepared to have all our plans derailed as behaviors occur. To be seen, to be heard, to be validated, I’ve found, can be so incredibly healing.

4. Validation. No, this isn’t a typo. We need validation of the challenges, but we also need validation that we’re doing a good job. It can be so easy to doubt ourselves as parents. And something that worked yesterday may not work today. We can easily feel like we’re failing or completely screwing up. Hearing from my friend that I’m a good mom, hearing from my family that I am patient and compassionate with my daughter — these are things I cling to on the days when my thoughts tell me otherwise.

5. Eyes filled with compassion and acceptance. I feel this is by far the most helpful thing. I’ve found fear, uncertainty, worry and concern can all start to look like judgment, whether intended or not. Eyes that turn away because they don’t want to stare can feel like avoidance, judgment, or like we’re all alone, or that we’re too much for others. Looking the meltdown square in the face, seeing the people who are in pain underneath the behaviors, and showing compassion and straightforward acceptance helps set my mind at ease. It helps me be able to focus entirely on my daughter and my own reactions instead of getting distracted by potential judgment. It can create an environment of love, which girds me up to respond with love, which I think is far more effective in any meltdown situation.

And here’s the deal, it is necessary for us parents to have this. It is necessary for our own well-being to have at least one or two people who can provide these things. It is necessary to feel supported, understood, like part of a team. And sometimes, we can simply be blessed with people in our lives — like Rachel — who do these things naturally. More often, we may need to teach people what to do. Most often, loved ones want to help; they just don’t know how. And if you take the time to teach them, to assertively ask for your own needs to be met, you just might be able to enjoy trick-or-treating next year, too!”

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From one parent to another…

If you hear about an autistic child wandering away from their parent, home or school on the news PLEASE DON’T CRITICIZE THEM!!!

My son is eight and this is a constant worry that I have from the moment he wakes up to the time when he closes his eyes and sleeps. It’s why when I came across a blog post about this topic I felt the importance to share it.

 

The original blog can be found here :
When a Parent Gets Criticized If Their Child With Autism Wanders Away

It’s written by

Every year I feel like I hear more stories of children with autism who have wandered away from their families. It’s often one of the scariest feelings in the world when that situation occurs. Instantly the trigger kicks in, and it becomes a time when families start alerting law agencies, neighborhood watches and their friends and family members to help in the search for their child.

The issue I constantly see is when a parent receives criticism for not doing a better job of protecting and watching their children. Often times, the interrogation begins and these parents are asked why they didn’t do this and why they didn’t do that, while others say they would never let their child get into that situation to begin with.

Whenever I hear someone make a comment like that, my bottom line is simple: Never criticize anyone until you know all the facts.

Being a parent to a child with autism can often be a 24/7 job. You support them and you become their champion for supports. Until you’ve walked in their shoes and understand that child as well as that parent does, you don’t do anything by criticizing them during a time like this. The important thing to do is find the child.

When children go missing, it becomes imperative to find them as soon as possible. The National Center for Missing & Exploited Children is the nation’s clearinghouse on issues related to missing and sexually exploited children, and they do their best to assist families and law enforcement agencies to help find missing children. New technologies are also being developed that focus on safety for families, from smart homes to wearable tracking devices, so you know where your child is at all times.

While I never went missing in my life, I was prone to bolting during my first few years of adolescence growing up on the spectrum. Each individual is different, but today this cause is near and dear to my heart. Every life is precious. And according to a study published in the journal Pediatrics, 49 percent of “survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years.” 

There is still so much more we can learn out there about how to protect our loved ones. When the time comes, though, please don’t criticize. Instead, help explore ways with them of getting things back on track.

Be safe and show love during both the good and bad times we all have. I pray for the safety for our families often and always.

If you are looking to learn more about this subject you can find free resources at The National Center for Missing & Exploited Children’s website here.

 

Even though Kerry’s blog was written about children on the autism spectrum (an the main reason I am sharing it since I’m a mom to a wonderfully amazing autistic little one) this mentality of quick to criticize needs to end when any child goes missing. The line  “When the time comes, though, please don’t criticize. Instead, help explore ways with them of getting things back on track.” needs to be remembered and I hope by sharing the original blog post it will help the message get back out there.

 

 

Being a parent you will get asked some random questions, most of the time it’s by our kids wanting to know things like “But why can’t we have a pet wolf? I’d love it and pet it” or “Cookies have food groups in them so they must be good for breakfast“.  However parents of  children with special needs (in my case a child with autism) the random / weird questions I get often come from people in our lives or total strangers. The questions only get more odd once they find out I’m a single parent to boot. Here are some of the things I hear along with my response.

Person – “Have you tried a specialized diet?” 
Me – “Have you ever tried dressing a snail?” {insert pause} “Oh you were serious. How would a diet help my child? He already eats pretty well and I’m lucky that he loves fruits”

Person- “Really? He has autism?  He looks so normal”
Me – “Well I could throw some wolf ears on him if it helps but I’m pretty sure we both rather just have you understand that not all disabilities are visible”

Person – “But he’s so happy and full of energy”
Me – “Yea…..because he is a kid. Did you assume that he is going to be miserable lump on the ground just because he has Autism?”

Person – “I’m sure it’s just a faze and he’ll grow out of it”
Me – “I didn’t know you specialized in children with Autism, please tell me more because the professionals we go to every week say other wise”

Person – “Are you sure?”
Me – “Of what…life? or that I really should or shouldn’t be buying my fourth coffee of the morning?”

Person – “I’m so sorry”
Me – “Why? What did you do?”

Person – “And you’re doing it all on your own, how do you manage to do it?”
Me – “Have you heard of caffeine?”

Person – “I’m sure there’s a nice man out there just waiting to meet you and help you with your son”
Me – “…yea……doubt that. Most people run when they hear that I’m a single mom let alone a single mom to a child with autism. So if he is out there he can find us because I’m not spending any of my limited extra energy looking for them”

These are just a sample of the questions I get, yes they are random and as you can tell I reply mostly with sarcasm because unless it’s a real question about autism I’m not going to give it any real attention. Now I should make it clear that I didn’t write this entry to be rude / vent. My goal is that people will remember that it’s ok to ask questions just don’t ask judgemental ones or ones that are just dumb. Instead when you see a parent (because it doesn’t matter if they’re a single parent or not) say something like this…..

“Your son/ daughter is really lucky to have you as their advocate/parent”

“I hope you remember to take a breather for yourself at some point today”

“You’re doing a great job”

“I hear so much about autism but don’t know that much really about it, what can you tell me?”

The point of this entry is to remember people (single parents or not), autistic children/ children in general, any one young or old with a disability (visible or not) we are all human beings — every judgment you make about them, even more so in front of them, affect them it doesn’t matter if they react to it or not. They think and feel things just as everyone else does, sometimes they can just feel them in different ways. Every parent of an autistic child can spend a great percentage of every day of their life advocating for their child, and if it isn’t apparent to you that the child is autistic — that might just show you how hard everyone is working together to make the life of the child fuller, easier and happier all around.

So to keep up with April being Autism Awareness / Acceptance month I wanted to share this animated video.

In my opinion it is by far one of the best videos for children of all ages to see so those who are on the spectrum get a little more compassion/understanding.

 

 

 

At first I wasn’t sure how / if I was even going to share this on the blog but with today being the start to Autism Awareness Month I think it would be rather fitting to finally share it.

I am writing this in hopes that someone can help or perhaps a bunch of people can help. I’ve already contacted many children’s charities, autism foundations as well as big name companies only to be turned away and I’m starting to feel deterred in even asking for help anymore. Like many parents with children who have Autism daily tasks that are simple and enjoyable for other children can be a huge task to even start for our family (like going for a walk when it’s nice out). For those who have read my blog before you are aware that my soon to be eight year old little man is on the spectrum and was diagnosed a couple of years back with being high functioning autism. Even though he is a happy, healthy little boy like anyone on the spectrum has his challenges it’s why I’m asking for help with our GoFund Me to help make his life a little easier. You see we are without a vehicle and when we had a vehicle (it was under Keegan’s biological fathers name and when we divorced he sold it) Keegan loved going on nature walks, special events (mostly train or animal related), camping and going on other random adventures that little did he know were educational all while being fun. Since 2013 Keegan and I have had to rely on family/friends for help, however since a majority of them work a standard 9 to 5  we can only get transportation help on weekends which means that during the week Keegan and I take public transit. This is overly tricky for Keegan since he gets overstimulated by the sounds/smells on public transit. Since we have no other option and are stuck to rely on public transit Keegan regularly shows up to appointments physically tired from being overstimulated, can’t focus at the tasks that need to be done and has mood issues/out bursts. If this wasn’t an issue in itself he has also missed out on school field trips, birthday parties, specialized events (like the ones held by the Canucks Autism Network and Pacific Autism Family Network) and even after school programs such as soccer, swimming lessons, gymnastics..etc. I know that asking for help with a vehicle is a lot to ask for but hopefully someone can help so Keegan can help feel like a “normal” kid and partake in things that he shows interests in.

I’ve already contacted every children’s charity, autism support group/organization/charity, Justin Trudeau /my city mayor / city counsel / other branches of the government, every local vehicle dealership and big name companies…etc all to be told “We’re sorry to hear about you and Keegan story but at this time there is nothing we can do to help” . Charities (like Variety, United Way, Presidents Choice Children’s Charity..etc) say “Funding is limited” or ” We don’t help with transportation have you tried contacting local companies“. Meanwhile those companies reply with “Sorry we don’t help individuals only charities , have you tried them?“.  I have even applied for disability grants, low income grants and children’s with disability grants all to be told they can’t help with transportation either. I have well over a hundred e-mails (No, I’m not exaggerating) to show that all these places that claim to help children with disabilities don’t really want to help ALL the children with disabilities even if their parent has letters from professionals (like their child’s pediatrician and speech therapist) backing up their request for help along with every piece of medical history showing that their child does in fact have autism.  Even our GoFund Me hasn’t had much help, don’t get me wrong I am very grateful for any donation no matter how big or small but I just though that perhaps with it being shared well over 200+ times we would of had more donations by now (as of writing this we’re at $20).

I’ve started asking for help and applying for grants at the start of this year and every day since then I’ve heard some sort of “No, we’re not going to help your son” even when asking if they could just share our GoFund Me link. I’m a mixed of emotions (angered at the so called children’s charities / autism foundations, frustrated at the situation as a whole, saddened by the fact that it seems like I really am doing this all on my own which feels like it’s going to take forever since we’re considered / are low income…etc) and as much as I feel like giving up I know I won’t/can’t because it truly would make my son’s life so much easier / better for him . It’s just now getting harder for me to stay true to myself when I am then asked for help by those in my son/my life or even complete strangers (Yes, I’m that person who will give a stranger my shirt or buy a homeless person a warm drink / meal…etc )because even though it’s easy to turn people away or leave someone in the lurch some times the smallest gesture can give someone hope and help them better themselves even if it is just for 24hours or perhaps change their mind about helping out others when they see someone in need of a helping hand.

If you want to read more about my son and my story or help our GoFund Me (by sharing or donating) our story can be found here :

https://www.gofundme.com/letsmakelivingwithautismeasier

I don’t really know how else to end this blog entry other than by saying that it really is true that parents will try to do everything / anything to help their children and to those who may be in a similar situation as my son and me don’t give up. I know you feel like you want to but don’t do it, you will find a way ❤

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It’s that time of year again but this year instead of a necklace you can show your support via these lovely earrings. They can be bough at any London Drugs location across British Columbia and Alberta, are only $20 and the proceeds go to the newly built Pacific Autism Family Centre

The puzzle piece to me has many meanings the most important part is that it is a small piece to help represent my son. No matter what he will always be my son, my world, my heart and my reason for doing a lot of the things I do. Without him I wouldn’t have a complete picture and don’t think my life, much like a puzzle, would ever be complete.

Autism is something we’re still trying to understand since everyone who is effected by autism is affected differently, even if they are on the same part of the spectrum. I’ve mentioned the following groups / sites before for those looking for support / information or just to see that you’re not alone and your child (or yourself) will be just fine even though they have autism. Autism doesn’t need a cure it needs understanding and less ignorance by those who don’t have it in their lives either by themselves, family or friends. There are many successful people who have kept their autism quiet in fear or being judged or thought less of. We hear about some of their stories but in the end anyone autism or not are capable of wonderful things and can be/do anything they work for.

In case you missed the links to the group / sites I normally mention when I bring up autism awareness here they are again.

Pacific Autism Family Centre,
a centre of excellence / network of supports for individuals with Autism Spectrum Disorder (both young and old) and their families across the province.
http://pacificautismfamily.com/

Bryan’s’ group
, it is a great source of support for those with Autism or parents / friends of those who are living with Autism:
https://www.facebook.com/AspergerSyndromeAwareness/

Autism Speaks Canada, has lots of information and goes into deeper detail then I ever could.
http://www.autismspeaks.ca/

Canucks Autism Network (CAN), they provide year-round, high- quality sports, recreational, arts, and social programs for individuals and families living with autism, while spreading awareness and providing training in communities across British Columbia.
http://www.canucksautism.ca/

When my son Keegan was diagnosed with Autism, it helped shed some light on why some things are the way they are. With his diagnoses came a whole new world of information that would be overwhelming for anyone, let alone a newly single parent who like any parent just wants the best for their child. I came across Puzzled Jewelry while learning about autism activity groups / random information on autism itself and the Pacific Autism Family Centre, since then I have followed their projects that bring more awareness to those with autism.

This year Puzzled Jewelry are doing it again and came up with wonderful puzzle piece earrings that will be hitting the shelves of London Drugs at all locations across British Columbia in March. HOWEVER you can get yours early with the purchase of your ticket to their fundraiser  A Night to Support The Pacific Autism Family Centre . It will be held on February 18th, 2017 and will be a night filled with food, drinks, music, dancing as well as some casino fun! Plus when you buy your ticket you’ll get the lovely earrings before ANYONE ELSE ! !

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Tickets to the event can be bought here:
https://tricitiesbc.snapd.com/#/events/view/1015018

For those who can’t make it to the even but still want to purchase a pair of earrings remember you won’t miss out, these will be available March 2017.

If you want more information for the Pacific Autism Family Centre it can be found here:
http://pacificautismfamily.com/

To find out more about Puzzled Jewelry you can find them on Facebook and their website

Again I’d like to personally thank the moms who started Puzzled Jewelry for not only making cute jewelry but more importantly bringing more awareness to autism and helping the Pacific Autism Family Centre.

A small thank you….

I’m going to start off by saying that I did not write this, it came up in my news feed and I had to spread the message along. As a mom to a little one on the autism spectrum I can relate to it on many levels, even with my son now being in grade two.

The original blog came from From The Bowels of Motherhood a mom who writes about raising three littles, autism and military family life. Here is what she wrote….

This is your first week of kindergarten. You are nervous and excited. You are getting into a new routine and meeting new friends. One of those new friends is my boy. He comes into your class only for a half hour each day because being in there all day would be too much for him. He goes to recess with you, but he has a grownup right there with him because sometimes he tries to runaway and he doesn’t always understand playground rules.

When I saw the two of you holding hands today, my eyes filled with tears and my heart filled with joy. I know you don’t understand why it means so much to me that my son has a friend. I know you are happy to play with a boy who is filled with life and laughter. I won’t say thank you for being his friend, because I know you like him for him and not to get a pat on the back.  

I do have a favor to ask you, though.  Right now your days are filled with story time, play time and crafts and you both do pretty well side by side.  But, you see, my son has autism and I know there will come a time when you will start to notice his differences. 

You’ll notice the holes in every shirt he has because when he’s anxious he chews on his collar. You’ll notice he runs back and forth and flaps his hands when he’s excited. You may start to notice he often talks a little too loudly.  You will start to wonder why he covers his ears when he’s surrounded by people. You will start to notice the stares from other kids when he gets upset about seemingly little things.  You will notice he often asks the same question over and over again.  You will see he often gets stuck on a subject and can’t always move on to talk about something else.  You will start to wonder why he rides a different bus or why he spends so much time in another classroom. You will notice he does different school work and he can’t ride a bike. You will hear other kids making fun of him. You will then realize he doesn’t understand they’re mocking him. These epiphanies won’t hit you all at once, but I know they’re coming just the same.  

For today, I am going to hold onto and cherish the image of the two of you holding hands, blissfully unaware of your differences.  But as time goes by and you start to notice, I ask with all my heart that you don’t let go.

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A special thank you to the mom for writing this and expressing the emotions / thoughts that I have had many times. A big thank you to the little man in my son’s class who has become his friend and looks out for him, I really must meet your parents to give them the biggest hug on raising such an awesome little man.  For everyone else, I hope this can serve as a reminder that people with autism or any mental health issue have so much going on already that all they need is a little understanding / compassion. They still want to learn, have fun and be included like everyone else.

…Not only about themselves but with what they can accomplish.

I’m doing this shout out blog for SURF’S UP FOR AUTISM, because they are doing something truly amazing. They’re trying to gather donations so children both young an old can have the unique experience of surfing all within a dynamic, enriching  and inclusive environment. But they needs help to raise enough so no one gets left out.

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Surf’s Up is a free two day surf camp in Tofino, BC inspired by a father who’s son was diagnosed with Autism at age 4 and by age 5 was standing on his first surfboard.  From there a dream was born to create the first free Autism surf camp in BC for children and families living with Autism.

The organization provides each child with one to one time with a certified surf instructor and Autism Support Worker so that each surf session is tailored exactly to that child’s needs.  They also have a certified BCBA Autism Consultant involved in the planning and day of the camp.  All the wetsuits, surfboards, food for the day as well each child receives a medal at the end of the event are provided by Surf’s Up

They even include siblings in every aspect of the day!You can help make their 6th annual surf camp for children & families living with Autism a success.

Surf’s Up is a not for profit Society, 100% of every dollar received goes directly into the cost of running the camp!

If you can donate you can do so by clicking on the link below
https://www.gofundme.com/surfsupautism

Don’t feel bad if you can’t donate because you can still help by spreading the word
Follow Surf’s Up
Twitter
@Autism_SurfsUp

Facebook
Rip Curl Surf’s Up Event – SUPA Society
Their website
SUPA SOCIETY

This lovely blog popped up in my news feed and after reading it, I believe it is well worth the share.

It’s easy to group those with Autism with a single label even though each person who has it are/can be very different from someone else who is on the same part of the spectrum as themselves. This blog was not only relatable to my son and my life ( more so him since he is the one who was properly diagnosed with Autism) and a great reminder that not all autistic children will fit your image of what an autistic child may look like or how they may behave.

Enjoy the read.

A Moms Responds When People Wonder If Her Daughter Really Has Autism