A volunteer, parent-led support group for individuals and their loved ones with exceptionalities.
Author: Lennox & Addington County Autism Network
My name is Mandy Stapley, I reside in Napanee, Ontario. I am a mother and an advocate. Allow me to tell you why I started this community.
My passion is my child.
He has autism, severe autism.
He has been labelled non-verbal.
There are many labels.
But, I like his name best: Hank.
A few years ago, I met some amazing people.
The Blais, Piontek and Ross families.
They befriended me during a time I really needed someone, anyone to understand what I was going through as a parent of a extrodinary needs child.
These friendships grew into something greater than I couldn't have imagined.
It grew into a grassroots organization: The Lennox & Addington County Autism Network.
We began networking to build support, acceptance and awareness among ourselves as well as in our community.
Changes to the (OAP) Ontario Autism Program were (and still) are uncertain.
We wanted to begin something positive, while supporting people in our community.
The Lennox & Addington County Autism Network is a nonprofit organization providing opportunities to individuals living with Autism Spectrum Disorder (ASD), family/caregiver support, allowing everyone to achieve their fullest potential.
Hank has a very restricted diet, for a number of reasons. Not because I want him to or because of any allergies. Some of the reasons are still unknown to me, is it motor function? Problems swallowing? Getting into a feeding clinic is much more complicated than you might think.
Hank has been diagnosed with autism and sensory processing disorder which causes extreme anxiety for him when a demand to eat or touch new foods.
Hank has had intense food therapy to introduce new foods, which was unsuccessful.
Although, I did learn a lot of useful tips and important information, that I have incorporated into our daily schedule to promote trying new foods during the food therapy sessions.
I’ve learned this is not a sprint but rather a marathon. I want to give a huge shout-out to the wonderful therapists at The Maltby Centre for their expertise and guidance throughout this difficult journey, without them I would’ve felt so alone. Thank you for all your support.
On this particular day, Hank held a banana! In my house that’s a big win!
Hank didn’t eat it but did have it in his hands was a huge success. It took 2 weeks of moving a banana closer and closer to him during breakfast to get him comfortable enough to touch and hold the banana, and LOTS of positive reinforcement. Since part of Hank’s sensitivities is colour related I tried to pick something neutral.
If you are enjoying our stories and want to follow our journey I’ll leave the link below, thank you for your continued support:
My little guy, Logan, he turned two years old at the end of February 26th. Logan has huge chewing sensory needs, where he bites everything and anything. We ordered him this Munchable chew-necklace from Amazon, it’s recommended for children on the spectrum and it’s really helping our little guy with his sensory needs.
The reason, I highly recommend this necklace is because, there are beads all the way around it. We’ve tried other chew-necklaces that have only the Chuy (One piece) hanging on a quick-release string-rope. I found Logan was just putting the string in his mouth, and it wasn’t fulfilling the need to “chew”. This one works much better for less developed motor-skills (since he’s only 2 he’s still working on those fine motor skills) He can grab this one quickly and chew anywhere. This one comes with a quick-release clasp as well.
When Logan was younger we used an amber necklace during teething which seemed to help with his chewing/need to bite when he overwhelmed or overstimulated.
If a little bit of my knowledge could help others who are going through a similar situation I am happy to share.
Story submitted by Erin, (Logan’s Momma)
Do you have a story you’d like to share with us, that may give useful tips or new ideas to other local families??
Logan’s special place is his bedroom, it is his sanctuary. His bedroom is where he would spend his entire day if he was allowed to. His bedroom has become his comfort, he knows when he goes in there he can truly be himself. He enjoys many things in his room, from blinking LED lights, a trampoline, and his swing.
Logan loves to be naked. We put a rule in place that he is only allowed to be naked in his room. We have tried to make Logan wear underwear rather than being naked but this does not work. When Logan is done spending time in his room he ALWAYS puts his clothes back on ( this took a long time to achieve).
Recently we had to take Logan’s bed frame away as he loves to bounce on his knees. One day he came out of his room and had blood dripping from his body, we quickly noticed he had cracked his head open. This was when Covid-19 had started in our community. We had to take him to the hospital and all the staff were amazing. He was able to get it stitched right up. Logan now has his bed on a box spring on the floor until we come up with a better idea.
Logan loves to spend hours jumping on his trampoline and swinging on his swing!
At night Logan turns his lights on red as it seems to put him in the best of mood to fall asleep.
Therapists at Maltby taught my daughter to use the IPAS at the centre. It was with the purpose that she could complete each task independently without guidance. At first she started with one bin and worked her way up to three.
At school it was useful for the EAs/teachers to have her engage in these mastered tasks so that they could then work with another child they were supporting as well. Then they could switch and my daughter could have one on one teaching time to learn the necessary skills at school. As most of you know, EAs are often stretched thin in the education system…often having up to 6 kids attached to them in the classroom. Very rarely do even kids with severe autism have one to one support.
I have found incorporating the IPAS in our life at home to be very useful. Here you can see my daughter completing her activities in each of the blue bins. While she is doing this, I was able to prepare dinner without interruption. I have found this to be very helpful in breaking her out of her bad behaviour. Before this picture was taken she was trying to dump and throw anything she could get her hands on. You could also use this to have your child complete independent skills such as putting clothes in each of the bins for the purpose of getting them to dress themselves independently. You can be creative with its uses. I have even put toys in the bins. I find it best to have closed ended activities.
Once they complete their IPAS it’s best if they have a reward or reinforcement. This could be anything from a special treat to extra screen time…whatever is motivating with your child.
The IPAS is beneficial for all children! Especially at this time when we are finding ourselves to be teachers to all our children during covid-19. Instructions below for those interested! I just bought the bins at the dollar store.
1. Goes to schedule (pink folder in my picture) 2. Takes off picture and matches it to bin 3. Completes activity in bin independently 4. Puts materials back in bin and takes picture off bin 5 puts picture in all done pocket 6. Repeat above instructions with all other bins 7. After completion of activities, raises hand to indicate done or uses an all done picture to either hand to parent…or verbally indicate done if able to do so.
First, Hank enjoys YouTube videos in multiple languages, he constantly has foreign languages playing on his iPad. (How he rabbit-holes to these videos is still a mystery to me.)
Hank really enjoys music with video clips in different languages. I’m still boggled as to why that is, if anyone knows please comment and let me know your thoughts!
Second, Hank is particularly rigid about his nails and any rough edges. I use to have to cut his nails in his sleep because it was too much of a sensory overload for him to handle. We have happily come a long way since then.
This video is from quite awhile ago but it is accurate of his rigidity to smooth nails to this day. He will typically come to me and say “mommy cut” pointing to a nail to show me a spot (I can barely see) that is bothering him.
I use the clippers to cut the rough edge off, but on this day he wasn’t satisfied with the trim I gave him and was VERY persistent “mommy cut, mommy cut…..” you get the picture, so I took a nail file and smoothed out the edge. This is now a regular occurrence in our house. Hank loves to file and smooth his nails.
If you enjoy our stories and want to follow our journey. I’ve added our link below, thank you for your continued support:
Some ideas to consider talking to children about COVID-19:
This time may be very challenging for children and adolescents, some of whom might not understand the reasons for school closures and the cancellation of extracurricular activities. They are likely to be bombarded with information through social media and from their friends that can cause anxiety and alarm.
Young people may also sense the anxiety of their parents, and worry about their own health and of other family members. For example, young children may not understand why they can no longer hug a grandparent. Children need to be reassured in a way that is age appropriate.
As a first step, you may consider a family meeting to:
· Acknowledge their fears. · Explain the overall risk of getting the virus and what happens if they do get sick. · Outline the steps you are taking to keep them and yourself safe during this pandemic. · Reassure them that young children tend to get a mild form of the virus. · Discuss any questions they may have.
You may also consider:
· Engaging them in activities that can help them feel empowered/choice. · Helping your children become better consumers of health information. For example, help them to identify credible online sources of information. · Helping adolescents understand the importance of social distancing, and encourage them to limit their socializing. · Encouraging your children not to share drinks, makeup or other personal items during this time. · Advising adolescents not to smoke or vape, and assisting them to stop immediately since sharing vapes or cigarettes are fairly common.
How to Self-Isolate:
Please Stay home, when possible.
· Do not use public transportation, taxis or rideshares whenever possible. · Do not go to work, school or other public places. · Limit the number of visitors in your home. · Keep away from seniors and people with chronic medical conditions (e.g. diabetes, lung problems, immune deficiency).
Pay Attention to Your Body and Your Emotions
· It’s natural to experience stress and anxiety in the face of a threat we cannot control. Because every person reacts differently, notice what your body and emotions are telling you. · Listen to your emotions, noticing any anxiety, sadness, anger, or detachment. · Listen to your body, noticing any change in appetite, new aches and pains, or feeling particularly hot or cool. · When you notice troubling symptoms, pause to care for your body and mind. If you become unable to manage or function well, seek the assistance of a professional.
Employ self-care practices prove helpful in everyday living:
· Maintain your normal routines. · Connect with family and friends. · Eat well and stay active. · Get adequate rest. · Do enjoyable activities; and · Employ coping skills that nurture your spirit, like mindfulness exercises or prayer.
Things You Can Do For Your Mental Health:
Treat yourself with kindness and respect, and avoid self-criticism. Make time for your hobbies and favorite projects, or broaden your horizons. Do a daily crossword puzzle, plant a garden, take virtual dance lessons, learn to play an instrument or become fluent in another language.
Take care of your body:
· Taking care of yourself physically can improve your mental health. Be sure to: · Eat nutritious meals · Avoid cigarettes · Drink plenty of water · Exercise, which helps decrease depression and anxiety and improve moods · Get enough sleep. Researchers believe that lack of sleep contributes to a high rate of depression in college students.
Learn how to deal with stress:
Stress is a part of life. Practice good coping skills: Try One-Minute Stress Strategies: • Tai Chi • Exercise • Take a nature walk • Play with your pet • Try journal writing as a stress reducer Also, remember to smile and see the humor in life. Research shows that laughter can boost your immune system, ease pain, relax your body and reduce stress.
Break up the monotony:
Although our scheduled routines make us more efficient and enhance our feelings of security and safety, a change of pace can perk up a tedious schedule. Alter your jogging route, plan a road-trip, take a walk in a different park, hang some new pictures.
We want to hear some ways you are keeping busy.
Email us at: firstname.lastname@example.org
Don’t forget to checkout our “Links page” on our website for new ideas!
He wasn’t able to block out overwhelming sounds and noises, and still struggles significantly with this.
I felt like Hank was experiencing certain sounds more intensely and they appear to be painful. (Example: Dogs barking, he covers his ears in pain and becomes paralyzed)
Hank still experiences this to an extent but has come a long way and has worked through and adapted with self-coping. Hank seems to find relief when he gets himself in this sensory sock. This material is very stretchy and soft as you can see he is enjoying this product. Lots of smiles and attempts at speech.
LINK TO SENSORY SOCK:
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When I first bought this little tikes trampoline I thought it would be fun and maybe help Hank with balance. He seemed to enjoy it for awhile and then he just lost interest.
After learning from The Maltby Centre Therapists/Professionals how to aid in self-regulation by offering your little ones techniques/tricks to minimize the build-up of frustration by providing an outlet for their energy.
The Maltby Centre and KidsInclusive therapists have been outstanding and I wish everyone could have the opportunity to get all the resources they need. If I can share my experience and offer you something new to try, that may help your loved one living with autism, I will be one happy gal.
I also encouraged the school to work in the trampoline at scheduled times to help with making it a part of Hank’s routine so he gets the sensory output daily.
It is my hope Hank will soon learn how to self regulate more easily. Sometimes it seems Hank doesn’t understand why he has so much pent-up energy or how to release it, and this is when I see meltdowns and self-injuring. I’ve found by building jumping into his routine has appeared to give him a sense of calm and in time, I hope to aid in an understanding of self-regulation.
Links below for trampoline and resources.
If you are enjoying our stories and want to see more of our journey our link is below, thank you for all your continued support: