I am a Mother to a Nonsafe Child

I am a Mother to a Nonsafe child. Yes, nonsafe really is a word. What exactly does that mean? It means not safe. I don’t use the word unsafe because to me it implies that something was safe at one time and well my son has never been safe. He has never had an understanding, an ounce, or an inkling of safety so far in his life.

My son is 4 years old. He is on the autism spectrum and is non-verbal. He has no sense of risk, he doesn’t understand safety and he knows no danger. He may do something that isn’t safe and get injured but then do it again. His brain is wired differently, and there is no room for these terms in his world.

He would run off into the woods.

He would run off from home.

He would approach a wild animal.

He would run into a busy street.

He will eat anything.

He would touch a hot stove or hot anything.

He would walk on a high ledge.

He wouldn’t know that a sharp object was sharp like a knife or scissors.

He would run in front of a moving vehicle.

He would jump into a pool or body of water.

He would jam his hands, fingers or body into any tight, confined space.

He is vulnerable to physical, mental and sexual abuse.

He is vulnerable to all people including predators and pedophiles.

The list is long and makes me cringe.

The implications of having a nonsafe child are many.It is difficult to take him into unfamiliar environments. His autism means he moves a lot so to go to visit someone, attend an important event, or go out in public means I am constantly moving-chasing and trying to protect him. There is no time for socializing, chatting or being present. The entire focus has to be on his every move.

It means I am always planning ahead. I have to identify hazards immediately upon entering a new space. I have to pre-plan appointments and outings to minimize the risks.

It means he never leaves the house with anyone but me. He is vulnerable to the world and I understand his abilities, challenges and way of thinking. It’s been 4 years of this way of life, I can often anticipate his next move and that is important when you are trying to keep someone safe who just doesn’t understand. I also need to protect others that I love and care about. It only takes one second, one head turned in the wrong direction, one glance at a cell phone…..I could never let them carry the burden of something happening to him while under their care.

It means my mind is constantly running. I obsess over safety. I have nightmares about my child being injured, about him going off without me “unprotected”. You know that feeling you had when you brought your newborn baby home from the hospital. You sat in the backseat with him/her and wouldn’t let your husband go over 25km. He had to go slow around turns and over bumps. There was no music, no chatting-it was all about getting that precious cargo to the destination. You were a nervous wreck that whole drive. It was an overwhelming feeling to protect that baby above all else. I feel like that every day- I am in the backseat with my baby but the reality is that he isn’t a newborn, my son is 4 years old and on the Autism Spectrum. Babies grow up, but Autism is forever.

It means I spend countless hours thinking about safety and taking precautions. My phone number is plastered on everything he owns. He is registered as a vulnerable person; he wears a radio frequency tracking device; baby gates; fenced in yard; Identification bracelets; high locks on all doors leading outside. I have more safety 1st baby proofing stuff than Walmart.

It means I sleep with a video baby monitor beside my head. Doors and gates are checked thoroughly and I’m up many times in the night checking on him. My brain is trained, if he moves during the night, I am instantly awake.

It means exhaustion and isolation. There are some places you just can’t go because the risk is just too great. There are some places you just don’t go because it is too tiring-physically and mentally, trying to stay a step ahead.

It means not everyone understands. It means less invites and friends and getting invites but not being able to attend. It means always say “no” and “we can’t”. Autism has become a permanent but valid excuse.

It is so hard to protect a child that has no understanding of safety. Safety is my most important priority above all else, but it is close to impossible to keep him safe. Despite, all the safety precautions Stalen sustains injuries on a pretty regular basis. Things like fractures, sprains, possible concussions, busted lips, cuts, scrapes, burns, bruises and gashes.

It is hard being a Mother to a Nonsafe child but it is my love for him that enables me to wake up every day and try to keep him safe.

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path.” ~Agatha Christie

My Baby

This is my baby. Stalen is 4 years old. He is brave and strong. He tries hard every single day. He loves his family. He loves flash cards. He wakes up smiling every morning. He comes alive in the water. He thinks his Mom is the best singer in the world even though she isn’t. He loves nursery rhymes. He is sunshine. He loves to dance and laugh. He loves to hold my hand. He has a huge personality and likes to play tricks. He loves to be tickled. He loves people. He loves fruit explosion muffins. He is non-verbal. He is trying to find his words. He is on the autism spectrum.
He is love. He is perfection. He is everything.

What you need to know about AFO braces…

A couple of years ago Stalen was diagnosed with bilateral calcaneo valgus with ankle pronation and has been wearing bilateral dynamic afo’s (ankle-foot orthosis) every since. He wears them 8 hours every day, 7 days per week.

AFO’s are pretty common braces and can be used to treat a variety of conditions. Overall, they help increase mobility and function and may help minimize or correct some deformities.

There are a couple different categories of AFO’s:

low AFO-they just cover the ankle and slip into the shoe.

static AFO-they keep the foot and ankle solidly braced. They are quite rigid.

dynamic AFO-they are rigid but they allow for more dynamic movements.

hinged AFO-two part brace with hinges at the ankle to allow for more ankle movement.

Wearing AFO’s can definitely be beneficial but it can also be challenging especially in younger children and those with sensory issues. Now that we have been dealing with AFO’s for two years, I wanted to share some tips to help those just starting out with them.

In the beginning, you start out wearing them only an hour or two each day and build up to 8 hours. Distractions are helpful when breaking them in. I would take Stalen to his favorite walking places so he would be distracted by being outside and in his favorite place so that he would forget about the orthotics. It was a good strategy and worked well for us!

Insurance-many insurance plans will cover some or a percentage of the costs of AFO’s. Be sure to contact your provider to determine how much they cover and how reimbursements work. Be sure to ask if your plan covers additional pairs in the future and if coverage is effected by the date. For example, some plans cover one pair per year but the second pair must be purchased at least 365 days after the first pair so the date is important.

Fitting and Sizing -bring lots of snacks and favorite toys to the fittings. Don’t forget to ask for direction on what shoe will work best for your child’s new orthotics and ask for a recommendation on shoe size. AFO’s usually require shoes about 2 sizes bigger than your child normally would wear.

Shoes-Once you find a good shoe that meets all the specifications provided buy several pairs in different sizes. You would be surprised how difficult it can be to find a sneaker in winter in Canada.

Socks-Beware of socks that have a lot of seams and/or ribs on the feet. They can bother sensory issues. For us, crew length socks seem to work best for orthotics that go to the ankle or above the ankle. I have tried a lot of socks for Stalen and “Growing Socks by peds” seem to last longer and are more comfortable than others. We purchase ours at Walmart.

Cleaning/deodorizing-We normally just wipe AFO’s clean with a soft cloth on a regular basis. You can run into challenges especially during hot weather where shoes begin to get smelly. You can try inserting bounce sheets into shoes overnight to deodorize or purchase a deodorizing product like Dr. Scholl’s Odour Destroyer. If neither work then it may be time to get new shoes that are more ventilated.

Safety-If your child is like mine, he loves to run. Without shoes, AFO’s can be slippery on surfaces like hardwood floors. I always ensure to get both the shoe and AFO off before Stalen is allowed to move freely.

Irritation-Be sure to check especially at first for signs of irritation on the feet like redness, blisters, cuts etc. and report those immediately to the company that fitted the AFO’s. An adjustment might be needed. Adjustments are common especially with growing feet!

Seasons-It can be difficult to fit AFO’s in seasonal footware like boots. We only wear AFO’s in sneakers or running shoes. If Stalen needs to wear boots we just take off the AFO’s and shoes and switch to boots and then he resumes wearing them when he is done with boots. I also adjust his wearing time based on weather. When it is extremely hot he doesn’t wear them for 8 hours.

Remember you know your child best, so use your discretion when it comes to duration. Of course, if you wear them as directed you will have more success but depending on the weather and your child you may need to use your own judgement.

Do what works best for your kid!

*If you have additional questions about AFO’s, email me at stalensway@outlook.com

Feeding Struggles

Stalen is 4 years old. He was diagnosed with Autism at 21 months and is non-verbal. From the very beginning, before I knew anything about Autism-we struggled with feeding. Feeding can be a very frustrating and difficult challenge. It can make you question yourself as a Mother and is quite concerning when your child just won’t eat. Your not sure what to do, what to try or what your doing wrong….

There are lots of myths about eating. Things like every child goes through this; just set food out; and my personal favorite-he/she will eat when they get hungry. For the record, from my experience a child with Autism will not eat when they get hungry. One of our longest runs was 16 days. 16 days of not eating and dropping weight, 16 days of back and forth to the doctor, 15 sleepless nights hoping that he would accept a spoonful, and lots of tears (mostly from me).

When we tried to switch Stalen from purees to real food is when our major problems began. He couldn’t handle the different textures. There was a point when he would vomit when touching certain foods. If he couldn’t touch them with his finger than getting it into his mouth and having him eat it was a gigantic challenge. He also couldn’t deal with the texture of holding a spoon in his hand without gagging or vomiting. Our texture problems extended beyond food. It seemed impossible.

I am going to share some best practices, tips and what has worked for us over the past 4 years as we dealt with texture issues and food refusal.

Do not panic. As you offer new foods to your little, they may react with lots of coughing, screaming, crying, gagging and make choking noises. This is an ultimate test-do not panic. If this is a recurring thing, brush up on child CPR techniques and research gagging vs. choking.Even though I was trained in first aid and CPR, I think there was a few months were I devoted time weekly to watching lifesaving choking and resuscitation videos so I felt I was prepared.

Schedule separate meal times. My goal has always been for our entire family to sit down and enjoy meals altogether. But, it just wasn’t realistic given our situation. Stalen’s eating challenges resulted in chaos and dread at mealtime for our family. Many times, he could not handle the texture of the food and vomited at the table. There was also lots of gagging, coughing and crying.

Do not have expectations. Prepare the food and offer the food. Do not beg, coax, guilt, persist, or other pressure tactics. This may sound easy but it is actually quite difficult. Your job is always to prepare and offer. It is all about creating an enjoyable experience regardless of the outcome.

The offering. In the beginning, offer one preferred food and at least one non-preferred food. Place them on the same plate/bowl.

Timing. Try to keep meals to 30 minutes. Anything beyond that is on the verge of becoming negative real fast, followed by a meltdown. Space out meals every 2 1/2 to 3 hours.

Play. Increase your child’s exposure to messy play and different textures through sensory bins. You can also purchase a nuk brush which is like a tooth brush but the end is textured. Allow your child to touch their lips and put the nuk brush in mouth and move it around. Use the brush before meals.

Toothbrushing. Use constant firm pressure and brush tongue and sides of mouth. This will help with the gag reflex.

Intensive Feeding. If you want to do a more intensive feeding therapy, begin by choosing a base that your child likes and one food that you want to work on. Be consistent and have realistic goals. One of the first foods we worked on was cheerios. Stalen loved yogurt because it was so smooth. In the beginning, I would put cheerios in a sandwich bag and crush them with a rolling pin. They were very finely crushed. We would add the crushed cheerios to his yogurt. Each week, we would increase increase the size of the cheerios and crush them less and less. After many weeks, the cheerios became 1/4 size, 1/2 size and whole size in the yogurt. Before we knew it, S was eating cheerios in yogurt. Then we decreased the amount of yogurt in the bowl. It is quite a lengthy process with it taking many weeks for him to reach one while cheerio.

Intensive feeding therapy for toast and blueberries.

Wilbarger Protocol (Brushing Technique). Ask an Occupational Therapist if the Wilbarger Protocol would be beneficial to your child. The technique involves brushing your child’s arms, legs and back with a special brush and takes about 2-3 minutes to administer. Many parents of children with autism have reported seeing decreases in sensory defensiveness and anxiety as a result of using this technique. Some of the benefits may include improved ability to transition between daily activities, improved attention span, a decreased fear or discomfort of being touched, enhanced coordination, and better self-regulation.

Keep trying. No matter what, keep trying and offering new foods. If it gets too much, take a break but then get right back in the game!

I remember the first time Stalen ate a cheesie, I cried so hard. That cheesie meant so much, it involved so much work; so many frustrations; so much trying.

Feeding is something for us that we have worked on for over 3 years and are still working on. It is not easy and results will come over time. When I think back on the progress that Stalen has made, it is beyond anything I could have hoped for. We were at such a desolate place with him not being able to touch food or even a spoon. Now, he eats “some” regular foods and can have different textures touch his lips. He still refuses meals and food. Some day I hope that feeding will be easy and effortless for us….

“You may say I’m a dreamer, but I’m not the only one…”

The Big Move

We moved to our new house this week! Moving is no fun on a good day but add a non-verbal child with Autism to the mix, it’s been a ride!

We have been going back and forth for a while about selling our house in the country and moving closer to essential services. Stalen is starting pre-school in the Fall so even more reason for us to be closer and live in town.

We put our house on the market on a Friday and we had an accepted offer by Monday night at supper time. It was exciting and fast. I was thankful that it sold so quickly because leaving the house for showings was a nightmare. There are very few places where we can go with S to pass an hour. It is especially difficult if we will be out during a meal or snack time. His days are very routine and that’s how he likes them. If you mess with the routine, you have to be prepared for the consequences which are usually one very upset little boy. We also had to remove some of our safety “equipment” to ensure our house would show well. This created so many worries and fears. There were no more pool noodles on the corner where S split his forehead, or mats on the floor to cushion his falls. With lots of planning and organization, we made it work! It was small things like buying a thermos so S could eat his soup lunch in the car or repositioning the TV so he had less room to bolt across the living room which helped.

We took S to look at about 5 new houses as we searched for our new home. Layout was very important. We finally decided on a house with a fenced in yard, lots of space and a room that would be dedicated to his important therapies. The walk-in closet and big corner tub with jets for Mama were also a bonus.

In order to prepare S for the move we were able to visit our new house 4 times before we took possession. I even managed to bring a snack to one of the visits. We drove by the new house every day and showed it to him. We talked about it a lot and read social stories about moving. I also bought the same but new dinosaur wall decals that he loves so his new room would look like his old room immediately and there would be some familiarity on the walls.

Days leading up to our move and the night before our move I was so overwhelmed with guilt. I felt so bad for pulling him from the only house he knows and turning his world upside down. I was also worried that he would go quiet on me and have difficulties going to the bathroom in a new environment.But, I also knew that if we could make it through the first few days we would be golden and so much better off in the new house. I knew that I could guide and console him through this big change.

The first day went great. He seemed excited and content. We had lots of flashcards and snacks. I worked really hard to get his room set up quickly. Once bed time set in and night was upon us things went downhill fast. S became agitated and anxious and stayed that way during the night. He slept for a few brief periods but would quickly wake up into full blown anxiety. I put him in bed with me and comforted and consoled him as best as I could. We were both exhausted the next day but “the show must go on”.

It’s been a week and he is doing amazing. He loves the new house so much. We went to our old house to leave keys for the new owner and when he saw our old house he wasn’t happy.

We have been going for walks exploring our new neighborhood. Stalen has been grabbing my hand and leading me to the patio doors to the fenced in yard. He loves to run back and forth and touch each the fence. Today, I bought him a sprinkler and he had the best time.

So many times during this buying and selling process, I almost let my worries get the best of me. It is challenging to buy and sell a house with a child with Autism

but IT IS POSSIBLE.

Stalen seems to be doing great in our new space! It really is a new beginning for us. I am optimistic and excited for big progress in our new house. Stay tuned!

Favorite Things

Here are a few of our favorite things:

1) weighted blanket from FDMT

I love this blanket because it comes with additional weights so as Stalen grows we can increase the weight. It is also easily washable. https://www.fdmt.ca/en/weighted-blanket-small-24-pockets-i-0119-6h

2) Deep pressure vest from FDMT

This vest has worked amazingly! It helps Stalen remain calm and focused. It also wipes clean.

https://www.fdmt.ca/en/deep-pressure-vest-i-0010-g

3) chewy

This chewable zilla tube with clip has been a lifesaver. It clips onto clothing or zippers so your not spending half the day looking for it. It is quite durable for aggressive chewers.

4) sensory brush

This sensory brush enabled my son to eat. It has changed his life! We started brushing him following the Wilbarger protocol (method) on a Thursday and by Sunday he was eating new foods. Prior to this he was eating the same baby cereal and two purées every day.

5) Handheld Mini Massager

You can find these at Walmart for under $10. They light up and vibrate and have a soothing calming effect. You can use it to relax your child or just let them hold it. Stalen loves his and although it takes batteries it doesn’t burn threw them.

These things have really increased Stalen’s quality of life and also helps to preserve my precious sanity!

Early Intervention

I really believe that the earlier you can access intervention services for your child the better. I have seen the progress that Stalen has made over the past two years since his services started and it has been amazing. At the beginning, he couldn’t sit for 15 seconds. He was always on the move. He didn’t interact or notice anyone and didn’t play with any toys. The difference between then and now is like night and day. I’m not sure where we would be today if it wasn’t for early intervention, but I can guarantee that it would not be a good place.

He sure was cute but we were struggling.

I remember being so overwhelmed. Every night I would have to lay with Stalen in bed and restrain his body so he could stop moving, settle down and go to sleep. It took 5-7 hours to get him to sleep. I felt like the worst mother in the world. What was I doing wrong? No one told me it would be like this? Every night the dread would set in after supper. I knew bedtime was coming! Every night I would think, I can’t do this for one more night. It was pure hell.

This was just bedtime. There were so many other struggles during the day. It seemed like everything was a challenge. His texture issues meant he wasn’t eating and every time I tried to feed him he was gagging and vomiting. He barely napped and would only sleep on me. He stopped napping completely at 9 months. He would make repetitive sounds and was hard to reach. He was missing milestones like waving or blowing kisses. He didn’t like to be touched. He preferred not to wear anything. He stared at the lights and the fan. It was like he was in his own world, a world so distant from ours.

I was a first time Mom. I wasn’t sure what it was supposed to be like, but I was pretty sure not like this. At first I believed that he would grow out of it all, because that’s what everyone says about babies. But, the hours became days and weeks. He was growing but things were not getting better.

I cried a lot. It’s heart breaking to think that something is wrong with your baby. There are two things that are true as a mother, your love and your gut. Always follow your gut.

When I made that doctors appointment and took my son, it was one of the scariest and hardest things that I have ever done. It is difficult to admit or suspect something like that about your beautiful, perfect baby. To say those words out loud, “I think my son has Autism” was probably the most difficult words to ever come out of my mouth. The road to a diagnosis can be bumpy and treacherous as you fight your way towards the services that your child needs.

Today, I am proud of the choices that I have made as a mother and for my son. I know that because we accessed those important services so early my son is making huge leaps and bounds in the right direction. He has the support he needs!

Please, please, please….if you are reading this and suspect or have an inkling that your child may be on the spectrum, please make that appointment with your doctor. Please do not ignore the red flags or warning signs. Autism Canada has four online screening tools available based on the age of the individual being screened CLICK HERE

I would be happy to chat with anyone who is struggling with making that call or wants to talk more about the warning signs and diagnosis process. Please reach out to me.

It is difficult to come to terms with the idea that something may be wrong with your child. It is so so hard! It doesn’t mean that you don’t love them. It doesn’t make your any less of a parent. You owe it to yourself and your child to investigate further.

If you think things are hard now, they will only get worse. I’m sorry…it’s not what you want to hear but it’s the truth.

Your child deserves the opportunity to access the services and supports that they need to be successful.

It is not an easy situation, and it is okay to be scared and emotional.

You will be okay.

You will get through this.

And remember, your child is worth it!

Happy Autistic Pride Day!

Today we celebrate autistic pride day! We celebrate the neuro diversity of those on the autism spectrum and the innate potential in ALL people. It would be an incredibly boring world if we were all the same.

People with autism want the same things that all of us want-love, acceptance, and a sense of belonging.

As human beings we need to be kind to each other and as parents and caregivers we need to teach and model-positivity,acceptance, love, compassion, and kindness-for our children. It starts at home. 🙌

Different is never ever less! 💕

Another Challenge…

I talk a lot about the non-verbal part of Stalen’s Autism because for me it is very scary. It creates a lot of stress and worries. Communication is so essential to so many aspects of daily living and to health and safety.

Stalen cannot tell me if he isn’t feeling well or has an ache/pain. He can’t tell me if something hurts, if he feels funny or has problems breathing. I have to always be in tune with his behaviour and actions so I can determine if there is a problem with him.

Last weekend Stalen had an allergic reaction to a mosquito bite. His arm swelled 3 times it’s normal size and now 6 days later his arm is still slightly raised. Besides the swelling and itchiness, he was okay. But…this led to a larger more serious concern…serious allergies!!

Allergies can be quite serious and even life threatening. As a kid I had a lot of allergies and still have a lot of them today. I’ve had severe reactions to tetanus shot (weird I know) and bee/wasp stings. I have an epipen to help with these more severe reactions. Stalen has never been stung and given his reaction to the mosquito bite and that he is non-verbal..it creates a scary potential scenario.

It’s scary to think that your child may not be feeling well and may experience difficulty breathing and not be able to tell you. I don’t even want to think about how terrifying that would be for him.

At our doctors appointment on Monday, I shared my concerns and asked for a proactive solution.

Stalen has been referred to an allergy specialist and we already have an appointment scheduled in the next two weeks.

In the meantime, he was prescribed an epipen jr. so if a situation should arise we are prepared with a proper procedure. I’m still concerned but it’s not as elevated as it was a few days ago.

At the end of the day, you just have to be “that Mom” and ask for exactly what your child needs.

Mission Accomplished… onto the next!

Imagine…

I have been on this autism journey since January 16, 2017 when Stalen was diagnosed. He was 21 months old. Today, he is 4 years old and non-verbal.

This journey has not gotten any easier in the past two years. There are really hard and challenging days. Most days are long, exhausting and emotional. We struggle with many things that others take for granted and can do with ease. Most things that occur naturally through development, have to be taught to Stalen.

On a weekly and daily basis, I have to remind myself to slow down and imagine…

Imagine not being able to speak

Imagine not being able to ask for assistance

Imagine getting lost but not being able to find your way home

Imagine people talking to you and asking you questions and staring blankly at you when you don’t respond

Imagine not being able to tell someone that your sick or have an ache/pain

Imagine being hungry but not being able to ask for food; being thirsty but not being able to ask for a drink

Imagine being scared or worried but not being able to ask for comfort

Imagine being cold or hot, tired or bored, sad, anxious but not being able to express it

Imagine being really happy or excited about something but not being able to share that news with anyone

Imagine not being able to ask for something that you really want

Imagine wanting to make friends but not being able to talk with them

Imagine being in social situations but not being able to participate like sitting at the table having supper with your family and everyone is talking about their day….or going to a birthday party but not talking to anyone.

If you really stop and think about your life….can you imagine not being able to speak? Can you imagine the frustration and how scared you would be? Imagine being in this world as a child….a teenager and as an adult. This is the world that my son lives in and so many others. Now, imagine all the other co-existing conditions with Autism-the sensory issues, seizure disorders, mood disorders, severe constipation, ADHD, ODD, OCD, learning disabilities etc. A world that is almost impossible to imagine. A world that is full of challenges and struggles. It is hard to imagine happiness,comfort and positivity in a world with such struggle.

Some days I sit on the couch for hours as he sits tightly beside me holding my hand. I know that there are things that I have to do like laundry, dishes, cleaning, errands, responding to messages, texts, talking with friends/family. But, I also know that he just loves the quiet and calm reassurance of sitting beside me.

Some days I am frustrated by my lack of alone time and no personal space. But, I know that this frustration is NOTHING compared to the frustration that he must feel every single day.

Some days we stay in our pajamas and dance around and eat ice cream, crackers, and lots of twists.

Some days I allow him to skip wearing his orthotics. Some days I have to give him a break from all the therapies and medical stuff, because there is just SO MUCH going on in his world.

I spend my days playing, tickling, bouncing on a big exercise ball, counting to ten, cheering loudly, singing nursery rhymes, twirling, cuddling, bubbles, books, going for drives, walks, and going to the playground.

Some days I feel guilty about the things that I’m not getting done and the people that I’m not connecting with. None of the other life stuff matters, when I imagine his world.

I always do what I can to try and make his world brighter. I can only hope that the love, laughter and silliness that he experiences with me provides some comfort. He deserves it and so much more!

It’s hard to imagine the world my son lives in…don’t judge…just IMAGINE!