this is me
”I am not a stranger to the dark
Hide away, they say
'Cause we don't want your broken parts
I've learned to be ashamed of all my scars
Run away, they say
No one'll love you as you are...
But I won't let them break me down to dust
I know that there's a place for us
For we are glorious...
”...When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I'm meant to be, this is me...
...Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me...” - Benj Pasek and Justin Paul
This song means so much to me. Every time I hear it I think, and then I think some more and I shed a few tears for my son, for everyone who at some point in their lives felt or still feels left out, like an odd ball, that they don't quite fit in.
How many times have we heard "why fit in when you were born to stand out"? You know it's true but the reality is that it is hard...standing out when no one is accepting you for YOU? It's all well and good us encouraging our kiddos to be themselves, that it's ok to be different, that they should march or dance to the beat of their own drum, but if the world is not accepting, then what? If the world continues to be a heartless and cruel place, what then?
Yeah so tears...
As always, my focus during Autism Awareness Month is to not just raise awareness, but to also promote acceptance.
Everyday I encourage myself and my children to shine brightly, I tell them that it's ok to be a poppy in a field of daffodils. BUT Is it really ok...will they be ok? I hope so...but I can’t just sit around and hope, and neither can you! We have a responsibility to promote kindness and acceptance wherever we go. We need to stress the absolute importance of it in the whole "it's ok to be different" equation. It should go hand in hand...right? It MUST...right?
But unfortunately it hasn’t been like that and that’s sad.
Truth is we’re all different, some more than others but to BE DIFFERENT and live happily, the world needs to BE ACCEPTING and this requires us to BE KIND....that is how we survive, that is how we coexist.
Kindness and acceptance - it’s as simple as that and it starts right there and with you...encourage your family and your friends and let’s make this world better!
Teaching children to brush their teeth and managing a trip to the dentist can be a bit challenging, especially when your child has autism.
Some autistic children are hypersensitive, like my son. They feel things differently than a typically developing child. There's no escaping this. So if you're a parent of a child with autism just embrace this fact and work with it or around it.
When i'm trying to get my son to brush his teeth I have to always remember how overwhelming it is for him and the need to be patient. The sensory overload from the taste and smell of toothpaste, and the texture of the toothbrush is probably a bit too much for him. Worse when he has to go to the dentist. The strange smells, the loud noises, the sharp looking tools and that strange masked person hovering over him with those sharp looking tools. When you really think about the whole thing, you have to acknowledge how scary the process must seem to children, even more so for those on the spectrum. They don't know what's going to happen or how long it will take and all of this contributes to making the experience difficult for you and your child...but especially your child.
My son no longer has an issue with brushing his teeth and will brush his teeth when told to do so. He will also allow me to assist when his teeth need a bit more attention.
Going to the dentist however is a completely different story. With never-ending negotiations and me exercising the patience of Job and then at the end of the session only accomplishing him saying hi to the dentist and going up and down in the chair. It used to be extremely frustrating, but not anymore!
My son's last visit was a success. While he did not allow the hygienist to use the ultrasonic tool that removes tarter, he actually gave her the green light to use the mirror, count his teeth, use her polishing tool on a few of his teeth and use gauze to clean the rest of his teeth. I call this a HUGE win. Of course there were negotiations, isn't there always?? Sonic the Hedgehog (his favourite toy) had to be present and I had to promise he'd get my phone right after to play with, but at the end of the session we were all happy to note the amazing progress he made.
So what did we do? How did we make such progress? BLOOD, SWEAT AND TEARS! Ha ha, I'm just kidding, there was no blood. There were a few tears though, and lots of sweat!
With guidance from therapists and tips online we made a plan and stuck with it.
Here are a few tips and guidelines we found helpful:
- Introduce/encourage teeth brushing from early;
- Make sure to start with a soft bristle toothbrush;
- Use visual supports or schedules, for example take photographs of the tooth brushing steps, print the photos and then laminate them in a table format. You can then use a dry erase marker to check off each step;
- Establish a routine - for example, 1/2 hour before bedtime, dress for bed, brush teeth, read a book then it is bed time;
- Sing a song every time your child has to brush his teeth. We always started with this song: "Brush your teeth, brush your teeth make them clean. Brush your teeth brush your teeth make them clean. Brush your teeth, brush your teeth, brush your teeth, brush your teeth, brush your teeth brush your teeth, make them clean." (Sang to the tune of that sunday school song "Oh be careful little eyes what you see".);
- Use visual timers. There are tons of apps online to help with this. We also invested in the Philips Sonic Care Toothbrush for children - it has a really cool sparkly kids toothbrush app which helped turn brushing time into fun time!;
- Try to take turns brushing teeth. Allow your child to brush your teeth and then you brush his teeth etc
- Try Hand over hand brushing. It works especially in the beginning stages.
- Choose a dentist who has some experience with children with autism. Ask around for recommendations. Bonus if they have a fantastic hygienist working with them.
- Plan ahead, talk to your child's therapist ask them for assistance as they can help with establishing a step-by-step plan or a social story with rewards.
- Leading up to the visit you, your child and the therapist should go through the steps i.e. check in, wait in waiting room for name to be called, meet the hygienist and dentist, sit in the chair etc etc
- Reinforce or reward for EVERYTHING, even if your child was only able to say hi to the dentist -the point is to make going to the dentist FUN!
There are many more tips and guidelines online to help parents and caregivers encourage teeth brushing and successfully manage a trip to the dentist. My suggestions above are only that...suggestions. They worked for my child but may not work for yours. Remember each child is different, so do your research and try everything until you find the right formula for you and your child.
It may take a couple of visits to get to the point of the dentist counting teeth, even longer for an actual cleaning, but it will come. So, DON'T GIVE UP and always always always remember to be patient.
”I know of nobody who is purely autistic or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”-
I recently visited someone and noticed him watching a video on his phone. I asked what he was doing and he said he was just watching a video of a moving train. I was puzzled and asked why. He answered, "it helps take my mind off of things...when I have a lot of stressful things going on I do this and it relaxes me..."
Ahh I said in my mind...It's his coping mechanism. This person is not autistic but the conversation got me thinking about autism, how autistics cope, how neuro-typicals cope and how similar they both are.
Do you know what stimming is? Have you heard that word before? The word stim is short for self-stimulatory behavior and is included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as part of the diagnostic criteria for autism spectrum disorders - “Stereotyped or repetitive speech, motor movements, or use of objects…"which "...limit and impair everyday functioning.”
What Does Stimming Look Like? Here are a few examples:
Everyone stims in one way or another. Maybe not in the ways described above but we do have our various coping mechanisms- our own way of stimming. What’s your stim? You know you have one!
I twirl my curls when I'm thinking about something or when I’m anxious, some people bite their nails, or crack their knuckles.
When stimming interferes with everyday activities and prevents learning however, this is when it becomes a symptom of autism.
Autistic persons usually stim when nervous, excited or when feeling over or under stimulated.
Temple Grandin, animal behaviourist and autism spokesperson says most people stim simply because it feels good. She said dribbling sand through her fingers was a feeling that used to calm her. She has also said that stimming "may counteract an overwhelming sensory environment, or alleviate the high levels of internal anxiety...". For instance, when my son covers his ears. I now know it's because there are certain sounds that hurt his ears, like the sound of a rooster crowing. My son will not only cover his ears but refuse to exit a car if he knows there are roosters are around.
Sometimes my son will just start singing around people or while his teacher is teaching. He'll also recite lines from his favourite movies or TV shows or line up all of his toys in some sort of formation.
When my son was about two years old he'd go up to random strangers (usually a female) give them a hug and press his chin or forehead into their chest or just sit on their lap. At that age it’s kinda cute, then again not really because hello stranger danger, but can you imagine him doing that at an older age? Exactly, not cute at all!
Lately he’s been squeezing my neck - thankfully it seems this is just a mommy thing! Sometimes he’ll come over to me and squeeze my tummy and say “squishy....squishy mommy”. I don’t quite know what to make of that, but again thankfully he only does that with me.
As you can see, there are some stims that you can use, some that you can work with or work around. But there are others that are socially inappropriate. In these situations what do we do?
Should we stop the stim? Wrong question....
If you try and stop the behavior you may cause a child to withdraw or lose an awesome opportunity to engage or interact with him.
Why is my child engaging in this behavior? Now this is the right question to be asking and a great place to start.
There are many reasons why a child could be stimming. They could be over stimulated or under stimulated, in pain, overwhelmed emotionally or they may just need to self-regulate or calm down.
So What Should You Do About These Behaviors?
If it’s interfering with activities or preventing learning then you should take steps to reduce the behaviour or encourage it taking place at a more appropriate time.
If the behavior is socially inappropriate (like sitting on some random strangers lap??!!) the goal should be to figure out what’s the reason behind the behavior and find a way to make it more socially appropriate.
Sometimes the behaviour may be a symptom of an ongoing medical problem which your child may not be able to communicate.
Some types of stimming are self-harming or may cause harm to someone else. In situations like this you should definitely do what’s necessary to try and replace the stim with a more positive behaviour.
How do you do that?
Here are a few ideas:
- first and foremost, take your child to a doctor. Eliminate any possibilities of medical issues such as migraines or ear infections causing pain etc
- take your child to a behavioral therapist and occupational therapist - they’ll guide you and point you in the right direction especially if the behaviour is harmful or inappropriate
- manage the sensory and emotional environment, ensure your child is as comfortable as he needs to be. For example my son and the dreadful rooster, we stay in the car together with the windows all the way up while he plays a game on my iPad. No sense forcing him to get out of the car making the stim situation escalate. He doesn't hear the rooster crowing so there is no anxiety attack and during that whole time my son remains a very calm boy.
- exercise! Get outside and play with your child....run, jump, dance, whatever your child needs
- once he’s not hurting himself, interact with your child while he’s stimming, engage in activities without trying to stop the stim. Studies show this works and naturally reduces the stim.
- use stimming as a reward after a period of playing or work. If you make time for stimming he will feel comfortable being himself. Encouraging more interactions and reducing the total number of hours spent stimming.
- respect the stim and join the stim! If a child is spinning plates, then start spinning plates. If your child is drumming on his chest then you do the same thing.
Sounds strange but it’s been proven to work. Google Floortime Method of Therapy developed by Stanley Greenspan. In his book Engaging Autism, he says
“Some children become intrigued – they now have a partner in crime, so to speak – and we get some shared attention and relating.
..so join in the child’s activity to create a relationship, and then begin to use gestures so the child, in order to get what she wants, has to gesture purposefully back to you and maybe begin using some words…"
The overall plan being to offer your child activities that give the same sort of sensory feeling as the stimming activity but go further in developing appropriate self regulation, engagement, and interaction.”
Perfect example? My son used beat on his chest and jump on hardwood floors a lot, now he only does it sometimes because he gets to rock it all out on an actual drum set. Do you see what we did there?
So, tell me what's your stim?
"Where words fail, music speaks..."
Hans Christian Anderson
I watch him every morning at his sister’s school. Singing and drumming with his chop sticks on his little red cushion. I see the children gathering, watching and listening. I hear some of them say hi. Sometimes he gives them a nod and continues to sing and drum. Other times he stops drumming for half a second and says hi back. I hear them say he has autism amongst themselves and then say he’s a really good drummer. There’s no actual conversation, there’s just music.
MUSIC IS LANGUAGE
Music is his language. It’s how he communicates best. I say best because he does communicate in other ways, he does speak, but he’s most comfortable when he’s making music.
If you're ever in a supermarket in Jamaica and you hear or see a boy singing in the aisles or in the line, it's probably my son. He sees a room full of people and wants to say hi or make a connection but doesn't feel comfortable doing that verbally so he starts singing. Sometimes he'll sing the Jamaican anthem, sometimes Shout by Tears for Fears, other times its Amazing Grace.
It takes too much effort to speak, to make those words come out. Especially when he’s focused on his music and in the zone. I can only imagine what’s going through his mind when interrupted to answer a question...maybe it's “Why do I have to speak? Can’t you see I’m busy trying to be me?”
To me it seems as if it’s exhausting and frustrating for him, when it’s easier to just sing what he wants to say. At times like this I do what’s necessary - I sing as well, I make up a rhyme, I do a jig or jingle annnnd tada success!
BOOKS WITH RHYTHM, WORDS THAT RHYME
I remember when he was about 2.5 years old and not speaking and we didn’t know what else to do but speech therapy. The therapist gave us exercises that included singing particular songs with him and recommended various books for us to read to him. The books that resonated with him the most were the rhyming ones, the ones that had rhythm and sounded like music to his ears. Books like Green Eggs and Ham and Brown Bear, Brown Bear What Do You See? We’d read these books over and over again and sing and dance to them even. We'd pause at certain intervals and encourage him to say words at particular points. Eventually he joined in, at first with just mumbles and then with actual words and soon thereafter he was reciting the whole book.
He would recite these books throughout the day and sometimes in the middle of the night! We weren't having conversations that a typical 3 year old would have with his parents but he was FINALLY talking.
He can now say "Good morning mommy, daddy, grandma etc," and he will tell you he is "good" when asked "how are you doing?". He will tell you if he is hot, cold, thirsty or hungry and will tell me "happy face mommy" if I look sad. If his sister is crying he'll go to her and sing a song about not being sad. Or if he knows he's done something to upset any of us he will promptly start singing "I'm so, I'm so sorry" which is a little song from one of his favourite shows. Some days you’llactually hear him speaking beautiful complete sentences like this morning when he so politely asked “Valerie can you please tie my shoe laces?”
He's still not able to have the typical conversations an 11 year old would have with his parents or friends but he speaks to us when he wants to and in his own way and we're ok with that, we get it.
I’m not a musician, neither am I a music therapist but as a parent, when I see the magic that happens with music - the windows and doors it opens for my son, I have to tap into it and use it!
Music has always been his biggest motivator. We use music to help teach him new things and it works. He also does drum, piano, and voice lessons. Why? because music is everything to him.
It has built his confidence and developed physical coordination between his feet, hands, eyes and breath. Music has also helped him and continues to help him to express his feelings and emotions which is important, when verbal communication doesn't come naturally for him. So, why not use it?
“I would teach children music....for the patterns in music and all the arts are the keys to learning" - Plato
Parenting is hard - period.
Parenting an autistic child? Extremely hard. Especially if you have other children who are not autistic.
Just take a minute to think about the level of emotions. Think how stressful it is for these siblings.
If you're the sibling of someone with autism, you know how it is. You experience the same things your parents experience. Every day is different and crazy and you never know what to expect. It's stressful, beautiful and chaotic all.at.the.same.time.
My daughter gets emotional at times. She knows that we love her just as much as her brother but she still spirals emotionally when she compares our interactions with her and our interactions with her brother. The fact is, autism parents spend a lot more time with their autistic child, and that's really not fair.
The feelings toward their sibling varies at any given time of the day swinging from love to dislike depending on what is happening.
For instance, they could be feeling like this:
"Why do you spend more time with him? Why do you pay more attention to him? He never gets in trouble! Do you like him more than me? Why does he get to use the iPad more than I do? It's not fair, I want to be autistic too! If I was Autistic you'd love me more..."
Why are those children staring at him? Are they laughing at him? They're staring! Leave my brother alone! He's autistic...he's the best brother one could ever have!
and then this:
Please no singing out loud now...
Leave me alone...
I just want some space...
It’s stressful, overwhelming and a lot to process, especially if they’re younger.
Recently, my daughter came to me crying about it all. She shared her heart and asked "What about me mommy?" She asked me to look at it from her point of view. To consider when was the last time I celebrated her in the way I celebrated the "little" things her brother does. She said, "Mommy, he gets a 'party' when he eats a banana, I eat my FRUITS everyday and no party. I'm not asking for a party mommy, just equality."
My heart broke, but I sucked it up...this was not the time for guilt! I put my autism mommy panties on, validated her feelings and had a frank discussion on how we were going to fix this.
We agreed that
- for the most part autism siblings adjust well, and are more compassionate, independent and easy going;
- over time, if left unchecked, Autism siblings could feel jealous, resentful, discouraged or angry;
- most Autism siblings feel protective of their sibling but embarrassed at the same time, and then feel guilty for feeling that. I know...complex right?
- ALL children need to feel loved and need their parents attention;
- Autism parents or any other special needs parents need to be extra careful to balance things out.
So we came up with a List to help/remind us to balance things out and decided to share it with you. Use it or share it with someone you think would benefit from it.
1. If you haven't already done so, it may be a good time to explain autism to your typically developing child - this will help them to understand and build compassion.
2. Make time for them. Special times that have nothing to do with your child who has autism. You could set aside regular daily times for them, like reading a story at bed time or 10 minutes each day when you tell them a few positive things you noticed they did that day. You could also take them out without their sibling, go to the movies or for frozen yogurt. Whatever they like, just make it special!
3. Encourage siblings to be closer and play more together. Look for ways that they can play, and have fun together. My son loves music, dancing and singing. So we encouraged them to play the Just Dance WII game together and we've noticed how much they've bonded over it.
4.Try to keep things balanced and fair. This is hard but it's important for your children to feel they're being treated fairly and equally. Make family rules that are fair for all. If one child is allowed to do something more than the other, that's not fair. Same rules should apply, if possible.
5. Validate and Manage Negative Feelings. We don't want our children feeling sad, anxious, resentful or hurt. Be aware of their feelings and validate them. Non-judgmental Communication is important so share your feelings too and let them know it's normal to feel the way they do.
6. Encourage friendships outside the family. This will help your children feel they’re more than just an autism sibling.
This is not an exhaustive list. I’m sure as time passes and situations change we’ll think of more things to add or change a few things but for now it’s a start to a happier and more balanced way of living for Autism siblings.