Special Needs Parenting

Tight Fitting Clothing: A Sensory Mystery Unravelled

Sensory Processing Disorder can create some pretty interesting choices and behaviours in children! Some of those choices can seem like they don’t make sense but when you have a better understanding of the “why” behind them, they begin to become more clear.

When our daughter Miss Optimism was younger, I used to get frustrated because I would get all the kids dressed and ready to go out and when I went to get them in the van, I would turn around and she had taken off her clothes and put on a bathing suit. It would be a cold winter day with two feet of snow on the ground and my little girl wanted to wear her bathing suit to the mall!

This happened day after day and my frustration grew. When I hid the bathing suits, she wore gymnastics suits! I had five kids under the age of 10 at the time and it was a lot of work to try to get anywhere on time, let alone when I had one child who was seemingly working against me!

I asked her why she wanted to wear a bathing suit in the winter instead of the lovely clothes she and I had picked out for the day and she couldn’t articulate an answer. I tried giving her choices “would you like to wear the green dress or the blue dress today?”, but inevitably, it ended in her wearing something as tight fitting as she could find.

It wasn’t until after her diagnosis of Sensory Processing Disorder (SPD) when we were working with an Occupational Therapist that I finally began to understand why she wanted to wear bathing suits in the winter (and summer, spring and fall!). What had previously seemed like a behaviour issue actually turned out to be a sensory need of hers that wasn’t being met.

The solution:

We were able to easily fix the issue by purchasing several tight gymnastics leotards* and suggesting that she wear them UNDER her clothing every day. This one tiny change enabled us to finally get out to the vehicle with her wearing clothing suitable for the weather! She wore the suits underneath her other clothing for a number of years and can now wear “regular” clothing most of the time. At times of stress though, she does still prefer to wear things that are tight.

*tip: buy the leotard a size or two too small to create that snugness your child is seeking

The reason for Miss Optimism’s choice in clothing and my subsequent frustration can be explained in one word that you may not be overly familiar with: proprioception. (Try saying that ten times fast!)

What is proprioception?

Proprioception is the body’s awareness of where it is in space. For most of us, it is as natural as breathing, but when there are sensory issues, it can require additional input (or less input) to keep that person regulated and keep that sensory system functioning in the way that it should.

Whereas some children with Sensory Processing Disorder avoid hugs, tight fitting clothing or being wrapped in a blanket, others seek out snug fitting garments and love to be wrapped like a sausage in a blanket or hugged tightly. When it comes to proprioception, I have some children who are seekers (like Miss Optimism) and some who are avoiders. It makes for an interesting household!

I am thankful that there is so much more information now than there was back when my daughter was first diagnosed with SPD. All children have sensory needs, whether diagnosed with a sensory issue or not. If you suspect that your child may have Sensory Processing Disorder, you may want to read more about the signs of SPD.

Proprioception seeking behaviours:

prefers tight fitting clothing
likes weighted blankets
enjoys wearing weighted vests
unknowingly uses too much force
mistakenly breaks things
stomps or walks loudly
difficulty with body awareness
bumps into objects, walls or people
kicks, bites, hits
chews on objects such as pencils or clothing
gets into others’ personal space
excessively physically affectionate
does not realize their own strength

Looking for real answers to your sensory questions? Sensory Processing Explained: a Handbook for Parents and Educators offers real strategies and practical solutions.

Join me for a free 5 part email series Sensory Solutions and Activities and get your Sensory System Behaviours Easy Reference Cards.

Does my Child have Sensory Processing Disorder?

Surviving Public Bathrooms with a Child with Sensory Issues

Must Haves for Kids with Sensory Needs

What Is Triggering the Fight, Flight or Freeze Response in My Child?

By Sharla Kostelyk

There has been a tremendous response to my article about Calming Your Child’s Fight, Flight or Freeze Response and a lot of questions. I wanted to follow up with some additional information to help you identify what may be triggering the fight, flight or freeze response in your child.

As a bit of a recap, the fight, flight or freeze response is our brain’s built-in alarm system designed to help us in times of imminent danger. The problem occurs when that response system is misfiring due to increased cortisol levels from prenatal stress or early childhood trauma or from external factors such as sensory triggers.

In the other article, I went over some of the signs of fight and flight and freeze. I also discussed ways to talk to your kids about recognizing their responses and shared my favourite video for kids on the amygdala and losing control of their emotions. I shared strategies for calming your child once they are in fight, flight or freeze mode and a few tips on preventing them from “flipping their lid” in the first place. You can read all of that here.

A common frustration for parents whose children are losing control of their emotions is not understanding what the cause is. The thing is, it’s complicated, but there are some commonalities that can help you play detective and determine what your child’s triggers may be.

For children who have experienced early childhood trauma or prenatal stressors, reminders of that trauma are usually a root of their triggers. If a child witnessed domestic violence or loud fighting, yelling or loud noises may be a trigger for them. For a child who was neglected or abandoned, feeling left out or alone can send the alarm bells sounding.

Children who were abused may associate change or unpredictability with their trauma and just a change in routine or sense of chaos can trigger that alarm. A child who spent time in the hospital, even as a baby in the NICU, can be triggered by the sound of beeping that mimics the sounds they would have heard in the hospital.

Triggers can be subtle and even a smell or passing by a sound or visual that reminds them of their past trauma can be enough to send a child into full blown fight, flight or freeze mode. For parents, it can be like living in a minefield. You can feel like you don’t know where or when the next thing that will set them off will be.

Keeping a record of your child’s fight, flight or freeze responses along with notes on possible triggers can help you to see patterns emerging. This is an effective tool for parents. You can create your own or you can use the sensory triggers log or behaviour tracker found in the More Calm in the Chaos printable planner.

Common triggers for fight, flight or freeze:

transition from one activity or place to another
hunger
thirst
sudden change
sensory overload
unpredictability/feeling lack of control
chaos
feelings of vulnerability or rejection
loss
loneliness
lack of attention
confrontation or “getting in trouble”
authority including parents, teachers, police, social workers depending on past history
praise
attention
calm
routine/structure

I know that both “attention” and “lack of attention” are on the list. That is because for some children, for instance those who have been neglected, lack of attention may be a trigger, while for others, such as those who have experienced sexual abuse, attention may be viewed as a threat and therefore, a trigger.

Likewise, both chaos and calm can be a trigger. For children who had an early childhood plagued by chaos or abuse, calm or routine and structure can feel unsettling and unfamiliar. Depending on the particular child, they may be triggered by peace in the home or they may be triggered by chaos or unpredictability.

One big signal to parents that a child is being triggered is when their response to something seems disproportionate to the situation. It is important to get to the root of your child’s triggers so that they can continue on their healing journey and begin to calm their responses to those triggers.

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Special Needs Mama, You are Amazing!

By Sharla Kostelyk

Some mornings, you have that momentary feeling of dread at the sound of the alarm. There is so much to do today, too much to do. All moms have that feeling at one time or another, but when you’re parenting a child with special needs, there are never enough hours in the day.

It’s not just the actual things to do, it’s the brain stuff, the emotional labour, the thinking about therapies and forms to fill out and appointments to make, and it’s the worrying about the future. The worrying that can keep you awake at night, even as you chide yourself that worrying does no good.

I am here to tell you today that you are amazing. I know that you don’t always get it right. You might go to bed every night feeling like you failed. But you get back up every morning and keep going.

All that advocating you’ve been doing? You know…when you shout from the rooftops even when it seems like no one is listening? It’s not for nothing. Even when the changes don’t get made, there are little ears that hear you standing up for them, pushing for change. Your words fall just where they needed to. Your child knows that he is loved, that his mama would go to the ends of the Earth to pave the way for him.

The other night when you read your child a story even though you just were so done that you wanted to skip the story time and go straight to the tuck-in? You won’t be getting any awards for that. There won’t be a parade in your honour. But that little one of yours? They felt loved. And for that, you deserve to be celebrated.

That day on the playground when the other moms ignored you because your child doesn’t fit into a box? I saw you. I saw your pain.

I see you today, getting back up every time there’s a setback, not giving in when another obstacle comes up. I see you getting stronger minute by minute, hour by hour, not because you want to, but because there is no other choice.

The rewards are few, but they come in those moments where something for your child clicks, when there is a breakthrough, or when you see them accepting your love.

This club we all belong to, the one where the price of admission is watching your child struggle with that which others take for granted…it’s a hard club to be in. The membership dues are tears and sleepless nights and weariness.

But the membership results are big too. You become fierce like a lion, a mama bear practised and ready to go to battle for her young. You champion other mothers. You cheer on the marginalized. You see the beauty that others cannot. You grow a compassion so strong that it reaches far beyond just your own child. You are amazing.

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The More Calm in the Chaos Printable Planner was designed especially for moms parenting a child with special needs. Get it now by clicking this link or clicking the image below:

Calming Your Child’s Fight, Flight or Freeze Response

By Sharla Kostelyk

The body’s alarm system is located in the brain. The amygdala, part of the limbic system, is designed to recognize danger and prepare our body to react to it. When it’s working properly, it should send signals only when there is real danger present. For some kids, the system is faulty and transmits false alarms, sending them into full blown fight, flight or freeze mode weekly, daily or even multiple times a day. Often, this faulty alarm system is due to increased cortisol levels due to prenatal stress or early childhood trauma. It can also be due to conditions such as SPD (sensory processing disorder), where sensory triggers cause alarm sensors to sound when no real danger is present.

To make matters even more complicated, your brain sees higher functioning tasks such as logic and planning as nonessential in a crisis. so it effectively shuts down that part of your brain once the fight, flight, freeze response is triggered. This is good if you’re in mortal danger and need all your energy to run away, but bad if your amygdala is triggered by everyday occurrences such as loud noises or the smell of vanilla.

Fight can look like:

kicking
screaming
spitting
pushing
throwing anything he can get his hands on
his hands clasped in fists, ready to punch
glaring
clawing at the air
gasping for breath

Flight can look like:

darting eyes
restlessness
excessive fidgeting
doing anything to get away
running without concern for his own safety

Freeze can look like:

holding his breath
heart pounding and/or decreased heart rate
shutting down
feeling unable to move
escaping into his own mind
feeling numb
whining
daydreaming

Did you do a double-take when you read “whining” on the list of flight and freeze responses? When I first learned that whining can be a flight or freeze response, I was surprised too. When I thought more about it though, I realized that whining could be an effective stalling tactic, therefore could be a learned freeze response or could be used to escape from something unpleasant.

Having your body going into fight, flight or freeze response often and unnecessarily can be debilitating. It is no wonder that some of our kiddos struggle with regulation!

There are ways that you can help your child to recognize when their brain starts to respond this way. The first step in helping them out of fight, flight, freeze response is to recognize the signs as quickly as possible and help your child learn to identify them.

There are a few easy ways to explain brain concepts to your kids. I like to use “upstairs brain/downstairs brain” and “flipping the lid” (thanks to Dan Siegel – a very useful video of his explanation here), but you can also use the lizard brain explanation (video about that here).

Explain the amygdala to your child. Empower them with knowledge to enable them to talk about their responses and better understand themselves. This also gives them a scientific reason for why they respond the way they do instead of just feeling like they are “bad” or out of control. I particularly like this video for kids.

Talk about the things they notice in their bodies right before the fight, flight or freeze response like their breathing speeding up, a funny feeling in their tummy, tightness in their chest, or their face getting hot. Then arm them with calm down skills that they can use the next time they notice those same feelings creeping up.

It is beneficial to track the patterns of these fight, fright, freeze responses in your child. They are likely not aware of what their triggers are, but by tracking their behaviours and the preceding events and possible sensory triggers, you will be able to pinpoint patterns that emerge over time. This will help you not only avoid those triggers, but anticipate them and be able to help your child navigate through those situations because they will be prepared for them.

The More Calm in the Chaos planner is perfect for helping you track these patterns in your child. It includes tracking logs for sensory triggers and behaviour. It is designed to help you see patterns and get to the bottom of what is triggering your child.

While your child is in fight, flight or freeze mode, help them to focus on their breathing. Regulating their breathing can help bring their “upstairs brain” back on board.

Avoid using the words “calm down”. Instead, use “let’s breathe” or “in through the nose, out through the mouth” or “you’re okay, just breathe”. Keep your words simple. Remember that they are only accessing their base brain right now, so lecturing or trying to reason with them is pointless.

Having them do crossing the midline exercises can also help re-set their brain, as it encourages the right and left hemispheres of the brain to talk to each other which can help stimulate the “”upstairs” brain to get engaged.

Once their breathing is regulated, you can try other calming techniques. Squeezing a stress ball, spending time in a sensory room or calm down area, blowing bubbles, colouring, yoga poses, chewing bubble gum, doing sensory activities (particularly heavy work ones), and calm down bottles are all good strategies to use. Some will work better for your child than others, which is something else to keep track of for future purposes.

After the incident has passed completely and they are no longer triggered, you can start a discussion about what factors may have contributed to the fight, flight, freeze response, what they felt in their body just before it happened, and what techniques worked for calming them quickly.

Are you confused about what is triggering your child and causing them to go into fight, flight or freeze mode? You can read about common triggers here.

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5 Things All Siblings of Special Needs Kids Need

By Sharla Kostelyk

“You don’t have to come. I understand.” Those words hung in the air and my stomach sunk. I was going to be missing something of hers again because her sister had an appointment. I couldn’t get out of it. It was an all-day assessment at a rehabilitation hospital that we had waited many months to get the call for. And of course, it was on exactly the same day that I was supposed to be taking my middle daughter to something she had been looking forward to. I couldn’t be in two places simultaneously. I was going to choose her younger sister’s appointment. We both knew it. There was nothing fair about it. It just was.

I hate that I’ve had to disappoint my other kids. I hate that they have had a childhood that is marked by so many specialists and meetings and stress. I hate that I can’t fix this for them. But on the other hand, I love that my kids show such grace towards others because they have had to learn to be patient. I love that they understand that just because a person may be different or have additional challenges doesn’t mean they are less worthwhile. I love that I see them reaching out to help strangers and neighbours and friends because of the compassion they have learned from having a sibling with special needs.

One of the most challenging things about being the parent of children with special needs is the guilt I have about my other kids. I often feel like there just isn’t enough “me” to go around. I feel like my kids whose needs aren’t as high get less than their share. It can feel impossible to meet everyone’s needs.

Last year, I shared a letter I wrote to my “other children”. In it, I shared the feelings I have about my kids having to and getting to be siblings to children with special needs. Because on one hand, it makes their lives so much harder and yet, on the other hand, it equips them with character traits and skills that they wouldn’t otherwise have.

5 things all kids with siblings who have challenges need from their parents:

Honesty

Acknowledge that their sibling’s special needs affect them too. Talk openly and honestly about the ways that they are impacted. There will be times that you will miss their games or be late to their recitals or not be able to tuck them in because of the needs of their sibling. This is disappointing for them. Of course. Acknowledge that.

Some parents think that they are protecting their kids by not sharing with them the truth of a situation, whether that be a sibling’s diagnosis or a sibling’s prognosis or other pertinent information. The parent’s intentions to shield a child are admirable, but the outcome can be that it increases worry and fear.

It is so important to give accurate (but age appropriate) information. Your child likely has worries that they do not want to share with you as they do not want to add to your burden. They may imagine things that are far worse than the reality. It is common for children to do this when they feel that something is being kept from them. They fill in the blanks with the worst case scenario. By providing factual information and letting them know that you are available to answer any questions they may have at that time or in the future, you can help alleviate their worst fears.

Check-in with them about their feelings

Just as parents of special needs children often need time to grieve, siblings need to grieve in their own ways too. Even if they are the younger sibling and have never experienced life any other way, seeing their friends’ lives may cause comparison and feelings of grief as they age. They may realize how much they are missing out on.

Teach them how to talk about their feelings. Do regular check-ins to see how they are coping. This doesn’t have to be complicated. Choose something simple like talking at tuck-in time or when you are in the car together or while they help you do dishes.

One of the traps that parents can fall into is minimizing the stress or difficulties their child faces because in comparison with the challenges of their special needs sibling, they can seem small. But issues with friends, decisions to make, bullying, schoolwork, and other hardships in childhood are very real and deserve to be acknowledged.

Encouragement and Appreciation

It’s hard to find that balance. On the one hand, you don’t want your child to resent their sibling with special needs, so you don’t want to rely on their help too much or have them grow up far too soon. On the other hand, you don’t want to rob them of the opportunity to grow in character and skill from all they have to learn from their sibling and their sibling’s challenges. It’s a fine line to balance, but an important one. One of the ways you can best balance it is to be sure to apply praise and appreciation liberally.

Be sure to also encourage them in their own talents and uniqueness. Show appreciation for who they are and what they contribute to your family. Write short thank you notes on post-its and stick them on their door or pillow. I still stand by my view that the 2 words that can have the biggest effect on your family are “I appreciate”.

Time

The thing you already don’t have enough of is time. I know it. Five of my kids have special needs. Time is already stretched thin. You have to be creative to carve out time with your other child (or children). Make the most of the time you have with them. Here are a few suggestions:

let them snuggle with you in your bed early in the morning
if just the two of you are in the car, swing by a drive-thru and pick up ice cream or a special treat and giggle about having ice cream for breakfast (or lunch or supper or late at night)
let that child stay up late one night a week or a month for some one-on-one time
have a special ritual like a secret handshake or line dance or signal
wake them up in the middle of the night to watch the stars or see the Northern Lights – I once woke my daughter up to see the beautiful Northern Lights and when we got outside, they were gone! We laughed and laughed and it’s such a special memory!
take the long way home just to finish singing the song
go for a walk with them
let them see that they are a priority by putting your phone down and making eye contact to ask about their day
say “yes” more often
eat supper as a family (if it’s at all possible)
have a dance party in the kitchen while you clean up
read to them (even to older kids) – It once took a year for us to get through a book because it didn’t happen often, but it was still worth the effort.

A Childhood

Of course their childhood will be altered and affected and may not look like what you imagined, but let them be kids. Give them breaks from the stress or chaos of home. If there is a grandparent or special friend that they can spend time with, facilitate them having regular breaks and being able to look forward to that time away without guilt.

While you may not be able to give them a childhood full of big events, trips, planned moments, complicated crafts, and cool birthday parties, you can give them small moments of special memories. Grab onto the opportunities that present themselves. Be silly. Be spontaneous. Dance in the rain. Let them stay up late once or twice a year for a special pyjama movie night. Sing in the car. Make up the songs. Invent a secret handshake.

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Tips and Tales from a Reformed Anti-Labeller

By Sharla Kostelyk

Let me paint a picture for you. It was the year we put our “twins” in preschool. They were three and a half years old and we had a new baby so I decided to have them go to preschool a few afternoons a week to give me some extra time to homeschool our older kids. It all seemed like such a smart plan until the phone call from the preschool teacher.

But before I get to that, there’s something you should know about me. I was that mom, you may know the one. Not only was I determined not to put a label on my child, I was also not going to have her officially diagnosed. No one was going to put my daughter in a box!

We knew that given our daughter’s prenatal history, she likely had FASD (Fetal Alcohol Spectrum Disorder) and we strongly suspected that she also had ADHD, but I had no intention of having her assessed. I didn’t want her to go through her life being judged because of her label. I wanted people to get to know my precious girl for who she was, not by a series of letters set out to define her.

The day the preschool teacher called was the first crack in my preconception about labels and diagnoses. She was a kind and experienced educator who had been teaching preschool for over 30 years. She began by telling me what a delight Einstein was to have in the class and how he was settling well into the routines there.

She then asked if there was anything about Miss Optimism that she should be aware of. I paused, unsure of what to say. She went on to explain that Miss Optimism was having many challenges in class and it was quite disruptive. She said that in her years of experience, she felt that there was likely something going on beyond just her being an active child.

I explained that it was possible that there were reasons behind her behaviour but that I had decided against pursuing a diagnosis and was strongly against labelling her. She patiently explained to me some of the positives that she had seen in her career of having a child diagnosed and invited me to come in the next day to observe the class.

The next afternoon, I stood outside the glass walls of the preschool. I knew my daughter well and expected to see her being more active than most of the kids in the class, but was surprised by how extreme it was. I observed dozens of children following the routine, hanging their backpacks and coats up and heading to sit on their chairs.

My daughter spinning and spinning, throwing her backpack in circles, accidentally hitting another child with it in the process. My daughter rolling around on the floor while the rest of the students sat in their chairs. My daughter lying under the table at snack time licking the floor while the other kids sat around the table eating quietly. My daughter repeatedly getting up during story time, an aide gently tapping her shoulder cuing her to sit down again until finally, my daughter rolled away from the aide’s reach and ran off to one of the play stations.

My daughter licking other kids. My daughter chowing down on glitter. My daughter climbing up on everything in sight. My daughter making a beeline for the exit. During circle time, my daughter jumping inside the circle and busting a move while all the other kids did what they were supposed to be doing. My daughter disrupting the class. My daughter being disregulated. My daughter struggling.

Watching that scene broke my heart.

Afterwards, the teacher suggested that I fill out the papers to have my daughter assessed. She explained that if we had a diagnosis, instead of being angry and frustrated with my daughter, others would be compassionate towards her and be able to know what strategies would be effective for her. We began the road towards getting a diagnosis for her.

We got the diagnoses we expected, but we also got an additional diagnosis. Miss Optimism was also diagnosed with Sensory Processing Disorder, something we had never heard of before. That started us down a path of being able to find real solutions for her that worked. Her life improved dramatically. Our home became more peaceful.

If you are resistant to having your child diagnosed or labelled, I want to share with you some important things to consider.

Your child doesn’t wear the label on their forehead.

After your child receives a diagnosis, that is held in confidence between the person who did the assessment whether it be a doctor or psychiatrist or other professional and yourself. You choose who has access to this information. They may encourage you to share this information with your child’s school, but ultimately, it is your decision who knows and who doesn’t.

While I share my children’s diagnosis with some people that I deem appropriate such as therapists, certain people in the school and their main doctor, I don’t necessarily share the diagnosis with other doctors, coaches and teachers.

An example would be that if I take my one child in to get stitches, the emergency room doctor does not need to know that they have ADHD but if I take another one of my kids in to get stitches and they are completely hysterical, it is relevant and pertinent information for that emergency room physician to be told about their PTSD and sensory needs.

I decide who to tell and how much to tell on a case-by-case, child-by-child situation. Since five of my kids have a variety of special needs and diagnoses, I’ve had a lot of practise in this area and I think I do a pretty good job of navigating it well most of the time.

Another important thing to note here is that as your child gets older, they can and should be part of the decision as to who and how much to tell regarding their diagnosis.

Labelling opens door.

Once you have a label for your child, there are avenues available to you that otherwise wouldn’t be. There may be support groups (for you or your child), respite programs, research studies, trainings, effective medications, and relevant programs that are suddenly available for you and your child to access.

Labelling can lead to funding.

Depending on where you live and the type of insurance you have, having a firm diagnosis can mean funding for your child or even for your family. Many school districts require a diagnosis before you can access services such as an aide and assistive technology.

Our youngest daughter has a full time aide in school as well as access to assistive technology for her hearing loss. She also gets sensory breaks, is being seen by speech language pathology through the school and has a team of professionals such as an educational audiologist advocating for her and working with her.

Where we live, families of children with certain disabilities are able to access funding for respite, sibling care during appointments, travel costs associated with appointments, and even in some circumstances, medication. There can also be tax breaks depending on your country and the level of your child’s disability.

Labelling can lead to answers.

Once you have a definitive diagnosis for your child, you can begin to research solutions, therapies and treatments. You can find the right professionals to work with your child.

I like having answers. I always research as much as I can after one of our kids receives a new diagnosis. I feel better knowing as much as I can so that I can find ways to help them reach their fullest possible potential despite the obstacles in their way.

Labelling can lead to support.

While finding an accurate diagnosis can help your child to find the support and programs that they need, it can also help you find the support that you need. You can seek out other parents who are walking the same road as you are. There is nothing in the world that is better for the parent of a child with special needs than to find that “me too” moment.

To label or not to label?

Your child cannot be defined by a single diagnosis. Their diagnosis is only a small part of who they are, but it is a piece of who they are. While there continues to be stigma with some diagnoses, especially those pertaining to mental health, you as the parent have ultimate control over who you tell and how much you tell them.

When I share my child’s diagnosis with someone, I usually also include some tidbits about who they are as a person. I like them to get a more well-rounded picture of who my child is. I recently filled out an IEP form for my youngest daughter and under the question “Is there anything else you feel that it is important for us to know?”, I wrote “she loves to dance”!

While ultimately, the decision to search out a diagnosis for your child is a very personal one, I chose to share my experience with it in the hopes that I can make the road easier for another family. I wish I had sought out assessments for all of my children who had challenges years sooner than I actually did.

Some other articles that you may find helpful on this topic:

A Label by Any Other Name: One Teacher’s View of Diagnosing a Child

6 Reasons to Celebrate an Autism Diagnosis

Labels Don’t Define: They Enable

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