Many families feel forgotten. Isolation is real and lonely especially when it comes to Autism. We can’t attend events, catch up with friends, celebrate birthdays and other special occasions, even within our own families. It’s not because we don’t want to but it’s because the safety risk, the meltdown risk, the anxiety…sometimes is just too much. Other times it’s just a bad day, there will be too many triggers, there will be too many people, too much noise and the specifics of the event may be too much-like not everyone enjoys the singing of Happy Birthday.
Eventually over time our friends dwindle and so do our invites. We start out with having an empty seat at the table but eventually someone hangs a coat off of it, or it becomes taken by someone new to the social circle.
We do not need constant invites. We do not need offers to babysit. But, we do need support even if we don’t ask for it.
What does support look like?
It’s the effort of just being there.
It’s a simple “you got this” text. It’s a “I’m here” on Facebook messenger. It’s a favorite thing-a bottle of wine, a coffee, chocolate chip cookies, or a book-left at your front door. It’s a smile, “a don’t worry about it”, a virtual hug when you need it the most. It’s listening without giving advice. It’s an “I don’t understand but I would love for you to tell me”. It’s a “I understand”. It’s a “hope to see you next time”
It’s non-judgement. It’s kindness. It’s understanding. It’s no expectations.
Please leave the empty chair for us at the table. Let it be a reminder that we want to be there. We love you, we miss you, and we need your friendship.
Sometimes it’s hard to find the right words and sometimes we just don’t know how to respond.
I get “sorry” a lot. And I like to tell people that there is nothing to be sorry about because Stalen is amazing.
Here are some potential answers if you find yourself in this situation:
❤️I’m here for you (and mean it!!) ❤️Your a great mom! You got this! ❤️How can I help? ❤️What do you need? ❤️The future is yet to be written. ❤️Anything is possible. ❤️Your son/daughter is the same kid they were last week. ❤️Ask questions
Unfortunately, our “new normal” includes face masks, hand washing and social distancing.
I do not know if face masks work and I’m not interested in debating that subject with anyone. I do know that many places are moving towards required/mandatory face masks for admittance and appointments.
Many children and even for adults-wearing a mask can be challenging-uncomfortable and claustrophobic. It is especially difficult for those with sensory issues and special needs.
In many instances, young children under 2 and individuals with medical conditions are exempt from wearing masks. Many parents are concerned about taking their kids out to public places even if they are medically exempt from wearing a mask because it may be busy and physical distancing is impossible; they may become exposed to the virus; you may have to explain your child’s medical situation to gain admittance; and then you may have to deal with comments from others because your child has an invisible disability.
In April, we started preparing for Stalen to wear a mask in anticipation of upcoming medical appointments.
My goal has been for him to wear a mask for a short period of time (like in hospital hallways or when quickly navigating a busy area where physical distancing is just not possible). We are working towards increasing the amount of time he will tolerate the mask. Our overall goal is for Stalen to wear a mask for 20 minutes. I think the hardest part for him and many others is to willingly allow someone put the mask on their face.
We have had some success with Stalen wearing a mask so I’m sharing what has worked for us. Perhaps it will give you some ideas on what will work for you. I hope it will help all parents…
Step 1: Purchase a mask for your child, yourself and others in your household. We chose a minion and a paw patrol mask for Stalen. I chose a mask with puppies for myself. I recommend you get at least two masks for your child which is a good idea so they always have one available for wear. You can also allow them to choose which mask they want to wear which sometimes helps and makes it seem more their idea.
Step 2: Introduce mask wearing to your child. Wear your mask several times a day for a minute or two and show them. Let your child touch the masks if they choose too. Expose your child to seeing as many people wearing masks as possible especially Mom/Dad, their favorite teddy bear or stuffed animal. (If you purchase two masks for your child you will always have an extra for their teddy/doll).
Step 3: Leave your child’s mask out in close proximity to where they are. When Stalen is at the table looking at a book, I set his mask on the table near him. I also put my mask on for 1-2 minute increments while at the table. You can start off by having it out but not within reach and gradually increase how close it comes to them. This step may take longer or be quicker depending on how your child feels about the mask.
If your child shows an interest in touching the mask or trying to wear it-use positive reinforcement. For example, Stalen sometimes takes his mask and sets it on top of his head so when he does this I cheer and give him his favourite-a piece of chocolate covered granola.
Step 4: When your child is comfortable with having the mask near them you can begin breaking down wearing it into a series of goals. Be sure to model each goal for your child using your own mask. Get other family members to model and participate as well. You can also use their teddy bear/ doll to model the steps.
We have broken it down to 4 step goals using keywords “ear”, “ear”, “pull up” or “pull down” ( whatever is required to position it properly).
goal 1: get one mask loop over one ear. If successful immediately remove and use positive reinforcement. Once successful at least 3 times in one day go to goal 2. If unsuccessful, you may need to break it down to smaller steps like touch mask to ear and slowly work up to loop over one ear.
goal 2: get mask loop over both ears at same time. If successful immediately remove and use positive reinforcement. Once successful 3 times in one day go to goal 3. If unsuccessful, break it down to a smaller goal like get mask loop over one ear and touch other ear with loop.
goal 3: get mask loop over both ears and adjust over mouth with nose free. If successful immediately remove and use positive reinforcement. Once successful 3 times in one day go to goal 4. If unsuccessful a smaller goal may be get mask over both ears and touch face with mask.
goal 4: get mask loop over both ears, adjust to cover mouth and nose. If successful immediately remove and use positive reinforcement. If successful 3 times in one day go to step 6.
Step 5: Practice getting the mask on for a few days. Once it is successfully on and adjusted immediately remove and give positive reinforcement. Once this is built up you can begin working on tolerance time.
Step 6: Increase the amount of time your child will tolerate wearing a mask. We started with 15 second increments and slowly increased each day by 15 seconds. We used lots of positive reinforcement to help increase the time. If you cannot reach the 15 second goal increase then decrease the time.
Overall the goal is to increase the time by a small tolerable amount each day leading up to your desired wearing time.
We built up the time that Stalen would wear his mask by wearing his mask during activities that he really likes. When he’s distracted he doesn’t notice the mask as much. We took the mask outside and he wore it when on his swing or playing in his sand box. We wore it inside when we were jumping and dancing.
Wearing a mask is especially difficult and sensory challenging. This process took us months.
Practice , consistency and keeping it positive are key.
If your child becomes upset by the mask or what your doing…slow it down. You may need to break things down even more and spend many days on a particular step.
If you get to a step and get stuck, please reach out and I will try to assist as much as possible.
10 Things I Want You to Know about My Son on the Autism Spectrum:
1.My son is more like your child than he is different. He likes ice cream, swimming, staying up late and YouTube. He is a trickster who loves to laugh, dance and have fun.
2.He is a good friend. He loves people but may have difficulty connecting with others. This is the social challenge with Autism. He is loyal and will accept you just as you are. If he is your friend, it’s like an elite club-once your in-you are in!
3.You may see meltdowns and behaviours. It may be hard to watch but remember it is even harder for him. He doesn’t want to be banging his head or screaming but it’s how he deals with an overwhelming world.
4.He is so smart and so capable. Autism is a developmental disability not an intellectual one.
5.Autism is a lifelong neurological disorder. We appreciate kindness and understanding but are not interested in trying some “cure” that worked for your friends cousins sister.
6.My son is a human being and should be treated as a human being. How you decide to treat him says nothing about him and everything about you.
7.My son may not be able to attend the birthday party, the field trip or sporting event but it is still nice to be included. He may not be able to say hi but it is still nice to be greeted. He can hear and see and will notice your attitude towards him.
8.We do not know what causes Autism. Researchers all over the world are working to better understand and determine the cause(s) of Autism. We do not need to hear your theories on bad parenting, vaccines or whatever your opinion is today. Let’s leave it to the experts! I’m too busy raising my child on the spectrum to debate this with you.
9.My son will stim, flap and engage in repetitive behaviour. I will not interfere with this unless it is self harming or unsafe. If it’s bothering you please move along or look away.
10.My son is AMAZING! He is loved beyond measure. He is a perfect blessing and brings so much happiness to others. He is so much more than an autism diagnosis. #autismawareness #autismacceptance #autismmom #blessed #amazing #advocate #educate
I haven’t written much in the last little while…my thoughts have been swirling everywhere.
Stalen’s 5 day hospital stay before Christmas had left me feeling mentally weak and depleted. His first experience with an ng tube was traumatic at best. We relived the nightmare over and over as the tube had to be reinserted 4 different times due to vomiting. The brief routine clean out that was supposed to take 24 hours turned into 5 miserable, hellish days. Sadly, after 5 days he still wasn’t completely cleaned out. I slept in the hospital bed with him and never left his side because that’s what needed to be done. Despite it all, he still smiled!
He finally was released from the hospital on Dec. 16 and then it was full steam ahead right into Christmas all the while still dealing with his bowel problems.
This was one of the first years that I was relieved that Christmas was over. I was very much a Grinch and begged my husband to take the tree down Christmas Day. I just needed things to return to our normal.
While others may have been ringing in 2020 with champagne, we kicked it off with a concoction of peg powder, laxatives and suppositories as we wait to go to IWK children’s hospital for further investigations and hopefully answers.
Here I am in January…fully submerged and ready to come up for air. We have started the school transition planning process as Stalen is registered for kindergarten in the Fall. The safety list and challenges have been updated. The meetings have been booked and set. Decisions have been made around transportation and lists upon lists have been made with questions, concerns, and priorities.
All the while, in the back of my mind I am fully cognizant of the fact that in about 2 months my sweet boy will be turning 5. It’s bittersweet! We will celebrate the AMAZING and LOVED little man he is yet I am cognizant of where he is developmentally at age 5. I was 1000% sure that he would have lots of words by now, be feeding himself and be potty trained. The age of 5 is a critical benchmark one. It’s the one where so called experts say if they have not developed certain skills than the probability of it happening gets smaller and smaller.
I find myself teetering-swaying back and forth between hope and reality. Each is pulling me towards them but I can’t decide which direction to go in. I need to have them both in harmony but lately Autism is not allowing that. It’s so hard to balance the hopes I have for my son in conjunction with the reality of our situation.
I will never let Autism steal my hope. It’s the driving force that fuels my fight, my advocacy and gets my through those hard days.
This is a temporary rough spot not a permanent destination. I will choose to be aware of our reality but I also choose to believe that things are possible, even when I don’t know how they will happen.
Today I launched an online petition encouraging/begging my local Costco to offer a Caroline’s Cart. In case you are not familiar, a Caroline’s Cart is a shopping cart with a seating area and seatbelt. It allows a special needs person to be safe and secure but also has room for your purchases. Unfortunately, they are not offered everywhere but are so needed.
Caroline’s Cart
The reality of our situation…Stalen is 4 years old, non-verbal and on the autism spectrum. He is big and strong at 45 lbs and 3 ft 8. He can no longer sit comfortably in the top part of the cart. He doesn’t have the mobility or the ability to be moving around a store freely. He is a runner so the risk is just to great. He also has pica and will also eat anything he finds on the floor whether it’s food or not. He also has a diagnosed condition on his legs which cause him to fall or lose his balance a lot. I’ve had to start putting him inside the cart but this really limits what I can buy, especially bulk items at Costco. It also is physically demanding hoisting him in and out of the cart. He also tries to open items and/or throw them out of the cart.
I am Stalen’s person and because of his safety and medical needs, I can’t just leave him with anyone. Unfortunately, I don’t have the luxury to always have a child free shopping experience and don’t see it as a thing for me in the future.
I also know of other special needs parents who are having the same difficulties shopping at the same store and have repeatedly asked for a Caroline’s Cart. So, I have also started asking my local Costco in March 2019 for a Caroline’s cart in person and via social media.
I am always told that my request is being passed on. But, there’s no Caroline’s cart in at my local store. I’m really not trying to cause problems for Costco. It’s really a compliment to them-I love their products and friendly employees…I want to shop there all the time or at least several times a week. But, unless something changes and they offer a Caroline’s cart, I may not be able to.
I don’t think that’s fair.
We need more accessible shopping for special needs families.
I am a member at Costco. I pay a membership fee. I still shop there and give them my money like so many other special needs families….are we asking for too much?
They have motorized scooter like vehicles with baskets to accommodate the elderly and those with mobility needs so I just don’t understand why they can’t accommodate a special needs child/adult and their family. We MATTER!!!!!
I have always advocated for inclusion especially in our community. Isolation is real for so many special needs families. We NEED to be able to go out in the community with our kids. Autism by itself already creates so many challenges.We need to go to banks, grocery stores, restaurants, parks, pharmacies, swimming pools…wherever we want and need to go. Our kids deserve the opportunity to be included in the community, so do their siblings and their families. Unfortunately, I cannot just quietly allow that opportunity to be taken away… whether its at Costco or someplace else.
I have been a Costco member since 2011. I just want to be able to go to their store and bring my special needs son. This is an issue with a corporate decision maker and not the wonderful workers who smile at my son and talk to him and me at our local store. There are some wonderful people on the front lines at Costco.
There is power in numbers. No matter where you are located, please sign and share our petition to show your support.
As a society, everyone should care how our most vulnerable are treated.
UPDATE: January 09, 2020- I spoke with our local Costco Manager this morning and we are waiting for a decision from Costco Canada head office with regards to a Caroline’s cart at Costco Fredericton. I will update as soon as I am aware of the decision. Thank you to everyone for your support.
I write a lot about my son being non-verbal. It is the most frustrating and challenging part of dealing with his Autism for me. He was diagnosed on the Autism Spectrum at 21 months. The reality is that my son is almost 5 years old and cannot tell me things. There’s so much I want to know and so much he could share with me.
I wish my son could tell me about his day.
I wish my son could share his dreams with me.
I wish when my son cried he had words to tell me why.
I wish my son could tell me when he’s sick and doesn’t feel well or when something hurts.
I wish my son could ask me to buy him things.
I wish my son could tell me what his favourite colour or song is, his true likes and dislikes.
I wish he could tell me if someone is mean to him or hurts his feelings.
I wish my son could ask to play a game, go to the mall or stay up late.
I wish my son could tell me silly jokes and stories about how he is Batman or Spider-Man.
I wish my son could ask me for hugs, kisses and cuddles.
I wish I was more confident in my son going off without me.
I wish I knew exactly what he wanted and exactly how he’s feeling.
I wish that life with non-verbal autism wasn’t such a guessing game. I wish I didn’t feel like a detective all the time-trying to use his body language and facial expressions to try to figure things out.
I wish there was more certainty than doubt.
I wish that when my son was upset that I didn’t have to go through a mental checklist-a series of questions to determine the root of the problem.
Is he hungry?
Is he sick?
Does he have a fever?
Is he injured? ……..the list goes on.
I wish I could say that our days are easy and that we rarely struggled.
But, I can say this…
I love my son UNCONDITIONALLY
I know that we will always be okay.
I know we will find a way to grant all those wishes. Yes, you read that right. I believe he will communicate all those things that I’m wishing for.
I know that as he grows-he will learn more, do more and gain more skills. He will learn his letters, to read and spell. If he can’t find his words he will type them or use pictures and symbols to communicate.
If the past is any indication of the future….we will climb this gigantic mountain. We may stumble. We may slide and fall. We may be exhausted and drained. But, we will never give up and we will do all those things, cross off all this wishes and do even more than I ever could imagine.
Today was a hard day. It doesn’t happen very often but Autism got the best of me today. I always try to be positive-but the unknown and uncertainty of Autism-often crushes that positivity. It is exhausting working so hard every day to fight against something that takes so much and creates so many challenges.
Today I just couldn’t fight it. The tears welled and I fought hard to hold them back. I can’t keep allowing autism to do this to me. It’s not about winning but living. There are lots of struggles and not many easy days.
How does a parent protect their heart from Autism?
Stalen is amazing! He is my world and he brings me so much joy. But, sometimes Autism creeps in and silently steals that joy. In certain situations, you are forced to face the reality of autism. Autism flaunts the “should and should haves” in my face.
My son should have found his words by now. He should be talking and have an extensive vocabulary.
He should be looking forward to weekends and sleeping in. He should be playing sports and video games.
He should be going to friends houses and having sleepovers. He should be trying to eat as much pizza as he can, asking for ice cream and telling jokes.
He should be enjoying being a kid.
Today, 6 kids around his age were out in the neighborhood. They were nearby on a trampoline laughing, jumping, wrestling and chatting. I could hear their laughter and their conversations. I also watched as Stalen pressed his little body into the fence and watched them play and talk. He wanted to join them.
It broke my heart. In that moment, reality confronted me.
The reality is that Stalen can’t go off into the neighborhood right now and play and talk with the other kids.
The reality is that I don’t now when or if he will be able to go off into the neighborhood.
Right now, his lack of safety, eloping, communication, body awareness, and mobility issues are standing in our way. This is a new neighborhood for us, this is a new challenge for me.
I was forced to set my hope aside and accept the reality of where we are right now. My heart strings were pinched and pulled and I was helpless in that moment.
I wished Stalen could be bouncing, yelling, laughing and talking with the neighborhood kids. I wished I could be watching him have fun but instead I watched him trying to make sense of it, just like I was.
Autism is a roller coaster of intense love, joy, beauty, stress, fatigue and grief. It is complex and hard.
Tonight, I will pull it together and mend my heart. Tomorrow I will wake up stronger and we will get ready and try again just like every other day.
My son Stalen is 4 years old. He was diagnosed on the spectrum at 21 months. He is non-verbal. We struggle every day with Autism and often times people do not understand our struggles or his behaviors.
This week I went on a field trip with my son’s preschool class and the upper class. One of the things that I loved was that the kids were waving and saying good morning to him. They knew he was non-verbal and wasn’t going to respond back but they still made it a point to greet him. They greeted him eagerly and excitedly…it was genuine. It is hard to put into words how I felt in that moment. As a parent to a child on the autism spectrum we hope and pray for friends for our kids. We hope that others will see how amazing they truly are. In that moment, these kids that I had never really met before gave me the greatest gift possible-they made my son feel loved and he mattered. Regardless of any diagnosis, he was included-they affirmed that he belonged with them and they accepted him-just as he is. It was beautiful!
Earlier this week when I picked up my son from pre-school I overheard a conversation between a boy (who is in Stalen’s class) and his Mom.
Mom: I’m glad you had a good day. Son: I made a new friend. Mom: What’s your new friends name? Son: I don’t know his name. He can’t talk. But he’s my friend.
I could immediately feel my eyes well up and I had to quickly get in the car.
These amazing kids see so much more than Autism when they see my son. They see him as the amazing little boy that he is.
There are so many lessons that can be learned from these kids…
Every person matters. Every person needs to belong and be accepted for who they are.
One kind word or gesture-a simple hello, a wave, a smile-can and does make a difference.
People will always remember how you made them feel.
How you make others feel says a lot about you.
Sometimes I see people and I know they may not be sure what to say to us. I can sense that they are uncomfortable Most times in public, my son is moving and stimming fast. It is his way to cope with the world. If they are not sure how to handle this, they may want to avoid us or turn and go the other way. I want you to know…it’s okay if you don’t understand Autism. It’s okay if your not sure what to say to my son when you see us at the grocery store or out in the community. Please just say hi and treat him how you want to be treated. I will do the same thing and greet you and your children pleasantly and respectfully.
Please remember….my son and I are a package deal.
It’s really quite simple-if he doesn’t matter to you then you don’t matter to me!
There are so many lessons that can be learned from the hearts of small children. I’m so happy that I got to see one of those lessons first hand this week.
People always say to me that they think things (Autism) will get easier as Stalen gets older. I really hope that they are right! But, I don’t think that’s entirely true. One thing that I have learned since his diagnosis on January 16, 2017 is to never ever underestimate Autism. Sometimes we win a battle but the fight always continues.
I don’t think Autism will get easier, that’s not negative but me being real and truthful. I think as Stalen ages we will face new challenges like school and puberty and who really knows what else? It always seems when we get one area under control another gets out of control. It is hard to find a balance living with Autism. There may be a good day, a great outing, a fantastic haircut, an awesome supper…but it is always there whether silent or in full force.
While things may not get easier, I believe that we will be smarter. I know more now about my son and his condition than I did two years ago. It’s the little things that have become the big things.
I know when he gets a cold and doesn’t eat for 16 days not to panic. He will eat again when HE wants too. Everything is his way, his terms and that’s just the way it is whether I like it or not.
I know that the professionals do not always have the answers and they may never have them. They only see a small snapshot of my son when he is before them and EVERY kid on the spectrum is different. What works for one may not work for another.
I know my son best regardless of what anyone else may say or think.
I know that good intentions may come in the form of unsolicited advice and opinions are just that.
I know that people will come and go from our lives and that will be their choice. We are a package deal.
I know that I must always do what’s best for my son and our family.
I know that when I find something Stalen really likes to buy lots of it like shoes, certain foods, and flash cards. When my boy loves something, he loves it beyond measure.
I know that having two bottles of ketchup in the house is a minimum.
I know that being his person is exhausting and draining but he is also amazing and has chosen me.
I know that there is more than one way to do something. It’s about finding what works for us.
I know that I can give a haircut in the comfort of my kitchen with a $10 razor from Walmart and it looks good.
I know that my son is more like your child than he is different.
I know that there is no greater bond or purest form of unconditional love than that of a special needs parent (or caregiver) and their child.
I know that surrounding yourself with the right people…your “me too” people and building your community, will maintain your sanity and help you through those really dark days.
I know that there are no bad experiences only learning opportunities.
I know that I can prepare him for anything-bloodwork, hospital stays, EEG, MRI, casts, plane rides, moving to a new house. Milestones will come and we will be ready in our own way.
I know that hope is brighter than darkness and positivity will sustain us as we climb the tallest mountains.
I know that crying is part of this journey and some days will be really hard. I know that this emotional rollercoaster will never get the best of me because I won’t allow it. I may be crying in the bathroom eating cookies but this is a minor setback and tomorrow I’m bringing my strongest game.
I know that he is capable of so much and together we are unstoppable.
I know that education and advocacy are the best things I can do for my son and others living with Autism.
I know that no matter the negativity or discrimination that we will encounter we will always be okay and get through it.
Autism is a lifelong condition and I know that each year I will become smarter and stronger and we will continue to share love, laughter and live our best life and that’s all that anyone can hope for.
Stalen's Way 