“You seem to be feeling really well lately! Exercising, walking…you have all of this energy I haven’t seen in a long time.”
“I know right?! It’s like I’m a whole new person!”
“No, it’s like you are back to being you again.”
That was the conversation between my hubby Aaron and I last night. I think I’ve mentioned it before, but I have lived with an unknown autoimmune disorder for about 15 yrs. now! I had years of tests, seeing specialists, yearly visits to the MS clinic in Toronto. It was exhausting. Both emotionally and physically. I was in pain everyday, heavy limbs, numbness, tingling and fatigue. One symptom at a time, I could handle. Having them all at the same time, put me in bed for sometimes weeks. I had difficulty walking up and down stairs, doing one chore in the morning was all the energy I had. Raising 3 little ones, and one with some pretty high needs at the time was almost too much some days. But we have to push through. We have to put the pain and fatigue and everything else we are dealing with aside. Looking back, I wonder how I made it through! Although I did have a lot of support from my husband, family and friends. I don’t know how I would have managed without them. For all you single parents out there, I am in awe of you! But, even if you have just one friend, one family member…give them a call. You don’t have to do this on your own.
It was very difficult to admit I needed help let alone accept help. But over time, I learned to say no more, accept the help when I needed it and take the time I need for self-care. Self-care is what will help you get through the tougher days. Even if that is waking up 5- 10 mins. earlier than normal to have a cup of tea, read a chapter in a book or journal. You deserve it!
Here are a few things that help me manage the day to day responsibilities:
Miracle Mornings by Hal Elrod
The Secret Slob/Fly Lady System
The Minimal Mom
Joshua Becker – Decluttered
Erin Stutland – Soul Strolls and Workouts
The Fitness Marshall – he’s so funny and super fun to dance with!
Take a look and see if some of these might work for you! I have to say, decluttering is a big job but can be done in small steps. We are still working on it, but I am starting to see some improvements. Cleaning and tidying has become easier because we have less stuff to manage. Less items to move in order to dust or wipe counters. Having less is refreshing and declutters my mind as well! What are some areas of your life that cause you stress? Can you find just 5 mins. to work on it? Mark it on your calendar!!
I had a conversation with a parent the other day regarding some struggles they were having with their child. The first advice I give to parents, caregivers and educators is to ask their child/student. Talk to them. Ask them what they are struggling with and what they feel they are doing well at. What are their likes and dislikes? What makes them happy and what upsets or angers them? Especially as a teen, it is good to let them know that you see they are struggling and you support them no matter what. The question, “How can I help you?” or “What do you need from me? I’m here,” can go a very long way sometimes. Instead of us telling them what they should be doing (don’t get me wrong, I feel like I’m telling Gracie all the time how to do things), we can ask them what they feel they need right now. In this very moment. Just letting them know that you are there for them, and allowing them to make some of their own decisions (as long as they are safe) empowers them to make the right choice and you just might be surprised! All of those things you’ve been harping on your kids for, might just sink in. We tend to forget sometimes that our kids, no matter what age, can be very insightful to what they need. Obviously this is more difficult for some. Some of your kids may be non-verbal, or give you one word answers or a grunt. They may say things are fine when they aren’t. But just letting them know you are there for them, can open up the doors to communication. If you child is non-verbal but can point to yes and no or nod their head, get creative and come up with some things you think might be triggering them. Look at what they are playing with or what they are watching. Sometimes if your child is watching the same episode over and over, it might be on topic with what they are going through. Sometimes the answer is right there in front of us but we are too busy to really see it. And don’t feel bad about that! Just remember, the answer could be the knowledge your child/student already has. They are pretty amazing.
It’s been a whirlwind since Aaron and I got back from our trip a couple of weeks ago. My hubby’s appendix burst and he’s been in and out of the hospital since. Turns out he had two abscesses (infections the size of a couple golf balls) that were taken care of and now he is home and on the mend. Today has been the quietest and least busy day since we’ve returned home. Today is a day I am able to take a breath and reflect on all that I have to be thankful for.
Many of you are dealing with challenges every day and it can be hard to feel like you have anything to be grateful for at times. Life is hard. Yet, life is precious. When things are going well, it’s common to take those moments for granted. But when someone you love gets ill, (even if it’s minor) you start to realize all of those things that should not be taken for granted.
Today, as I have some quiet time to reflect, I have so much to be thankful for. I am thankful for my husband and all he has provided for us. I am thankful for my children who rallied together to tidy, clean up after themselves and set the house up for their dad to be comfortable in. I’m thankful for my parents who held the fort while I drove kids here and there and stayed with Aaron when I could. I am thankful for family and friends that are always there, just when you need them. I am thankful for this quiet moment to come to the realization that Gracie was worried about her dad because to her, any surgery is serious. She’s never seen her dad in an unhealthy way. I realize every one of my frustrations with her came out because that is how she deals with her anxiety, and I couldn’t see that. And I realize, I need to give the kid a break. So what if she left all the frozen fruits on top of the fridge instead of in it. So what if she asks me a gazillion questions a day that she knows the answer to, or sits/stands a foot away STARING at me. Non-stop. So what, if she is obsessed with food and constantly asking to eat, especially the sweets. So what if she is always there. Always. I need to get over it. I need to remember how far this girl has come!
Today I am grateful our family is healthy and happy. We have a roof over our head and food on the table. We have family and friends and teachers and EAs and coworkers who we are blessed to have in our lives.
What can you be thankful for today? If you don’t have family or friends around, or feel like you don’t have anything to be thankful for on this day, please know you have a wonderful group of parents who are living a life similar to yours. The special needs community is a fierce one! We are there for each other. You are not alone! If you are feeling that way, please head over to our Facebook group and join our crew! Just click on the Facebook icon at the top right of this blog. Send me an email and we can chat. We are here for you. I am thankful for you. And if you haven’t heard this in a while, you are loved.
I’m tired. Tired of wearing a mask. Tired of not being able to hug those I love or even those who just need a hug. I’m tired of knowing how many students are going to struggle with the changes this year and tired of not being able to go out in public and enjoy life the way we used to. I’m tired of knowing there are many people I love and many people I see at work who are on their own, isolating and living by themselves.
Today as I write this, I’m just feeling a little blah about it all. Tired. I want the life we had back. This is getting emotionally draining.
But… I know others have suffered so much more due to Covid and have lost loved ones. I know others are struggling to put food on the table and pay their rent. I know small business owners are working their butts off just to keep afloat. I know so many others are struggling with loneliness and mental health.
That doesn’t mean to say that my feelings aren’t justified. It just means, in the grand scheme of things, we are okay. I don’t know if this will be our new normal, but I do know it is our new normal for the time being. I know I am feeling blah at the moment, but in a few minutes, I’ll be grateful and feeling joyful for this Saturday spending time with the people I love.
Look for the things that bring you joy. Look at your child and smile because you know they are loved. Give someone in your close bubble a hug. Have a cup of tea (or other cool drink) with a friend. Look up at the sky and see the stars. Cozy up in your favourite blanket and watch a good movie, especially one that makes you laugh. Ask yourself, what are some of the small things that you can be grateful for in this moment?
What is your child’s developmental age compared to their birth age? This is something that I think is important to be aware of and remember. They usually aren’t the same or in our case, Gracie is 17 in birth years, 17 in some developmental stages, yet can seem as young as 4-8yrs of age, give or take a few, in other developmental stages.
I know I was taught in College to treat everyone I worked with at whatever birth age they were at. To make sure they didn’t stand out and help them fit in as best they could. To hide their visual schedules in a binder or even more creatively in a CD case, back in the day. We were also told to not let them carry around their favourite stuffed animal in high school or as an adult out in public, and so on. But is this really fair to them? How do we balance teaching them to be proud of who they are and wanting them to fit in and not be made fun of? It’s a tricky thing. But over the years, I think we’ve managed to balance both ways. It certainly hasn’t always been easy. Gracie loves certain things that most teens her age wouldn’t enjoy or would be very embarrassed for anyone else to know about.
I remember when Gracie first started listening to rap music as a teen. Her playlist included songs with bad words that made me cringe and the next song would be The Wheels on the Bus! She was in this middle stage that we all go through of wanting to grow up and yet not wanting to lose the innocent things that bring us so much joy. She was made fun of in elementary school for liking Treehouse TV. Which by the way, she still loves and watches to this day! (She did give me permission to share this with you and I’m so very proud of her for getting to this point of loving herself just the way she is). She still does struggle with the fear of someone making fun of her for what she loves. But she holds her own, and doesn’t hide as much as she used to.
I think part of the reason Gracie has accepted herself is because she allowed herself to get to know others who have special abilities and they accept her for who she is. I think I’ve mentioned before that Gracie didn’t want any part of the special ed. department at school or the people in it when she first got to high school. She wanted to hang out with the “popular” kids. But she just couldn’t keep up with their conversations, couldn’t fit in and couldn’t be herself. After talking to her about the great qualities many people have and what it takes to sometimes be popular, and the importance of being herself, her whole life changed. By accepting the other kids in her program, she began to accept herself. The friendships she developed are filled with acceptance and this unconditional love that I’ve never really witnessed before. And I have to say, she is extremely popular at school!
I believe what my professors taught me was what they thought was best at the time 20 years ago. We are constantly learning and finding new ways to teach our kids and students. The way some things were done many years ago, we wouldn’t even attempt today. But if we teach with a kind heart, open mind, creative ideas and most importantly, accepting our children/students for who they are and allowing them to be themselves is the most important gift we can give them.
I find that seeing Gracie’s developmental age helps with my patience level as well. I’ll write another blog post and link it here when I do to explain more of what I mean. But for now, ask yourself what your child’s developmental age is. Can you meet them there? What are your thoughts on this? We’d love to here from you! Feel free to share in the comments section.
No summer camps, no respite, no daycare, no summer school, no community living teen groups. Is this what the summer of 2020 is going to look like? I don’t know about you, but this summer is going to look much different for us than it usually does. We’ve already had 3 months of constant family time! Don’t get me wrong! It’s actually been pretty great! And much better than expected! I seem to have had more patience even with homeschooling. Which brings me back to those moments when Gracie was younger and having major meltdowns. It seemed that the bigger the meltdown, the more calm I became. Anyone else ever feel that way? It’s like when there is something traumatic or frightening going on and you just go into “fix it mode” and then crash when it’s all said and done. That seems to be what has happened in our family. Everyone stepped up, and thought about each others feelings and needs. But let’s be honest, it’s starting to wear thin on everyone.
Summer is a time for fun and friendship and outings. Campfires and boating, swimming and camp! The biggest challenge for Gracie is not getting to attend Camp Kennebec this year. Every summer she meets up with friends for a week or two and has the time of her life! Other than Christmas, Camp Kennebec is the highlight of her year. A place where there is no judgement, she can be herself, try new things and make memories that will last a lifetime. But this year is different. And those of you who have children who struggle with the word “different/change/transition” know what I am talking about. It’s hard enough to have the small transitions and changes that happen on a daily basis, but something as big as this with a lack of understanding about Covid19 makes things a little more complicated.
For the most part, the tough times of having to explain to our kids about Covid has come and gone and I’m hoping most of you have gotten into some sort of routine. But I know it hasn’t been easy.
This summer will be different. But that can also bring on some creativity. Whether I want to be creative or not, I need to figure out what this summer will look like so my daughter will still keep up her social skills and have some good memories. Out of the 8 weeks of summer, Gracie is usually in an overnight camp and day camp for a total of 4 of those weeks. So for HALF of the summer, Gracie is entertained by someone other than myself. Now I get to entertain her for 8 whole weeks!!
Here are some things that we will be doing to help make this summer go over a little better:
We have an AMAZING friend who has 3 children on the spectrum. You want to talk about Wonder Woman, this is her in the flesh! She parents her 3 children (all who have different likes and needs) in a way that I aspire to be like! Every time we go to her house, she has activities planned and THE best snacks for the kids. Now I’m not saying you need to do all of that. I’m just letting you know how fantastic she is because she definitely deserves a shout out! So does her hubby Marc who helps her out!
This fierce mama has invited a small group of kids to her house weekly so they can see each other, go for a swim and keep up their social skills. We have worked so hard to teach our kids the social skills they need (and we keep teaching them) so this isolation stuff has been hard! I am so grateful for this family and their kindness. Do you have a friend who might like to host if you aren’t able to? Now is the time to not be shy. If you don’t ask, you’ll never know. And these are trying times where we really need our village to help us out!
Swimming: the beaches are now open in our area. And I hope they won’t close any time soon! As long as everyone is respectful and keeps their distance, we should be good. We will head to some smaller beaches and secret spots we know about. We were even thinking of getting a small above ground pool for the summer, but that’s still a discussion to have with the hubby! Lol Although now that the weather is so hot, driving down the road to the beach is welcoming!
Walks: There are many trails in our area. Can you find a quiet trail to take your kids out for a walk on? Check out these trails in our own back yard, Awenda Provincial Park There are also several around town. And don’t forget about the Wye Marsh! Their trails are open with a limited capacity.
Zoo: The Elmvale Zoo is now open so that might be a nice place to take the kids for the day. Easy to keep your distance and some interesting animals to see. The Toronto Zoo is now open but you have to book your tickets online only and there are time slots. For those of you who have children that would never walk the distance of the Toronto Zoo they now have a Scenic Safari where you can stay in the comfort of your vehicle. It is a 90 mins. tour. I’m hoping they keep this as an option because I think it would allow MANY families to attend who normally wouldn’t be able to.
Camping: We hope to get out camping. At the very least, my hubby and I are going to go one weekend as the kids aren’t as interested in that anymore. But remember that awesome mama I mentioned above. She has a daughter who would struggle with camping, so they improvise! They have camping in their backyard with tents and a campfire. They enjoy all the activities of camping you can imagine and when night falls and it’s time to hit the tent, this mom and her daughter head inside so her daughter can sleep comfortably in her bed and their dad stays outside in the tent with the other two. So awesome!! And still SO.MUCH.FUN! I will do another post just on camping and will link it here when I do.
I was going to keep writing and adding some summer activities. But I’m going to be honest with myself and with you. We will be at home A LOT of the time. I’m not big on going out. I work full time. I’m tired a lot of the time. I have great ideas of all these exciting things we can do, but if I’m honest with myself, we don’t get to half of them. We like our alone time. Our down time. And honestly, I’m not going to feel bad about that anymore. We’ll do what we want, when we want, and when we can but we also need to keep up with our responsibilities and our own needs too. I’ve learned to not feel bad about it anymore. I’m a good mom and I do my best. Even if my best means taking some down time for myself so I can keep parenting my kids the best way I know how. So please, to those of you who can’t get out or do a single thing I mentioned, don’t be hard on yourself! You are doing what you can at this very moment! Your kids will remember the love they feel from you much more than the memories of camping or going to the zoo.
For those of you who are interested in more ideas for things to do with your kids this summer, click on the link below and check out the photo where you will find some great ideas.
I found this picture on Pinterest. I would like to give credit to the person who spent the time to create it but it was on a few different blog links. Obviously we won’t be able to do some of them because of Covid and closures but there are several that can be done. I hope you enjoy some of them if you can!
So to all of you families out there, enjoy your summer, whatever it may look like!
Wishing you a safe, healthy and happy summer with as few meltdowns as possible!
Ever wonder how to connect with your child or student? Do they seem to be in their “own world”? Will they not make eye contact with you, hug you, play with you?
One thing that I have used with my own daughter but also several students of mine is the Floortime Method. And I have to say, it has worked each time! Keep in mind, every person is different and I’m not saying that this will 100% be your strategy to finally connect. But, it’s worth a shot isn’t it?
The Floortime Method/DIRFloortime was created by Dr. Stanley Greenspan. On his website you will find a free assessment and parent course. I purchased one of his books many years ago and if you’re interested, you can purchase it on Amazon.
I don’t want to make this post too long and there is so much to explain, but if you go to the websites, there will be a wealth of information there for you to read. BUT, I know how busy you guys can be!! So to make things super easy and simple, in a nutshell, you literally just get down to the child’s level and start engaging in the activity that they are doing. Is she spinning? You spin with her. Is she banging cars together laughing? You bang cars and laugh along with her. Is he flapping his hands looking at an object with his head at a certain angle? You do the same! Every time I’ve done this, the child has connected with me in some way. They have always smiled and seemed thrilled that I was joining “their world” and doing something they love to do! After connecting in this way, you up the stakes a bit by not just joining their world, but literally going in their world. If Gracie was throwing bean bags down the stairs, laughing, I would run down before her to grab the bean bag, run back up the stairs as quickly as possible and throw it down again, laughing my head off! If a student was rolling a car down a track fast so it could crash, I would start by stepping in front and saying “my turn” and I would roll the car down the track fast and react in the same way he did when it crashed. At first, the kids were like “Whoa, what do you think you’re doing?” but very quickly when they realized they had a turn next, they would join me in play. They seemed excited to play with me.
This method of play therapy is very specific with a certain amount of time during the day, a certain step by step process in a sense. But for me, as a parent at home who just wanted to connect with my child as quickly as possible? I started with what I’ve mentioned above. I took their idea and did what I could.
That’s what we do with EVERY professional we saw. Take their advice and use what we thought would work best for our family. I’ll do a video on this soon and will link it here.
I hope this helps you and your family!
If you have any other questions, feel free to email me at email@example.com
Well this is a tough one! In all honesty, I think that certain skills can be taught on how to be a good friend, how to have conversations with people, play skills, how to connect with non-verbal children who seem to prefer to play independently etc. etc. But what it really comes down to, in order for all of those teachings to work, is for your child to find someone who accepts them for who they are.
GG has always connected more with adults than children her own age. The adults seem to enjoy her enthusiasm and even more, her honesty. Not all teenagers can handle that kind of honesty. I would say her biggest struggle right now is not understanding the conversations that her peers have. Plus developmentally, they are at a different stage than she is. She is wanting to go to parties or hang out with friends on a Friday night yet still loves treehouse tv. She listens to the typical rap music her peers listen to and then mixed in with those playlists she has the wheels on the bus, etc. She can’t be unsupervised so this makes things very difficult! She can be easily manipulated to do something because she wants to fit in so bad. She’s been in tears over this.
I know some of you have children who continue to struggle with peers and developing friendships. My advice to you is to keep working through them as they come along, but also throw in some teaching moments whenever possible.
*Disclaimer! LOL I haven’t researched this in a long time! We learn as we go. So most of my suggested book list is probably outdated! However, they still worked for us so that is why I’m sharing them. If and when I come across some new material, I’ll let you know!
Here are a list of books and programs we have used and love:
Pivotal Response Treatment® is a highly acclaimed research-based intervention for individuals with Autism Spectrum Disorders (ASD). PRT® is a naturalistic intervention model derived from Applied Behavior Analysis (ABA) *
The Circles Program teaches social boundaries. Your school or school board should have a copy of this program. Ask your Special Education Resource Teacher (SERT) if they have one available and if they can incorporate it into their school program.
The American Girls Care and Keeping of You Books are great for teaching hygiene and body changes, etc. Let’s face it, hygiene is a big factor in whether or not our kids make and keep friendships! The Feelings Book is also another great one to check out!
The Greenspan Floortime Approach website has a free online course and resources for parents. It’s been years since we incorporated this method in our home or with some of the children I’ve worked with and what I remember is putting myself in “their world”. If a child was spinning in a circle, I would join them. If they were flapping their hands and making noises, I would join them. If they were lining cars up, you guessed it, I joined them. This allowed the child to see that I was interested in what they were doing. I was amazed at the eye contact I received and the smiles because I was joining their play instead of trying to direct their play. We connected which eventually led to trust. I could then add to their play. It was incredible! And very rewarding.
Throughout the years, we have met some pretty incredible people and families. Especially in our autism community. If you ever get the chance to go to any social groups through Autism Ontario or other programs, take the leap and go! Even if you have hesitations. I promise you it will be worth it! The parents get it! They will support you and offer assistance. You won’t get the stares (even if it is just out of curiosity and not judgement), and you and your children will connect with other parents and siblings and friends that can possibly last a lifetime!
We have gone on some overnight trips through Autism Ontario and they have been some of my favourite moments that provided some of my favourite memories. If you are in the Georgian Bay area, check out the Kinark Outdoor Centre. Look under Autism and see their family respite weekends (definitely one of my favourites) and family camp programs. We attended the Family Respite Weekend and it was incredible! Hubby and I got about 2-3 hours a day to ourselves to do what we wanted while G was with a one on one worker and her siblings were off with a group doing activities with other siblings. It was amazing!!
Again, this is just a small list of books/sites and I could go on and on but each child is different and only you will know what works best for them. This will hopefully get you started! If you need more specific strategies, send me an email. We’ll help each other out!
*Koegel Autism: Pivotal Response Treatment (PRT) Training and Services.
GG’s biggest struggle with her peers is not making friends, it’s keeping them. She is a very popular girl at school! Everyone knows her and is extremely kind to her. Yet she never gets invited to hang out with them outside of school. Like I said before, this would be complicated to arrange making sure she had the supervision she needs, but we’ve never really had to worry about it because she doesn’t get invited.
She is starting to see that as she gets older, the gaps are getting larger. She is realizing that the kids in her special ed department are pretty cool and she feels so much more comfortable with them. They understand. They accept her for who she is. Being “cool” isn’t what’s important now (sometimes). It’s having friends that genuinely like her.
The only problem now is, most of her friends are all in the same boat. They all want friendships or a partner so badly they go from meeting each other one day, being best friends within 5 minutes, to either dating or hating each other the next.
With the dating comes holding hands, kissing and you know the rest of the stages of a relationship. The problem with our kiddos is they go from 0-10 in a nanosecond. And don’t quite understand the boundaries and privacy. We are trying to explain that she needs to learn how to keep a friend before she starts a dating relationship. Again, this is why it’s so important she still have supervision so they can help her navigate this part of her life. I’d do it if I could, but I don’t think she’d want her mama following her to school everyday!
With hating each other, it’s usually due to a misunderstanding. Someone could be giving her a compliment but she takes it as an insult. Or if she wants someone to like her so badly, she gets extremely anxious and her coping strategies come out. She laughs hysterically, blurts out words (usually in someone’s face), asks a gazillion questions and in all honesty, just annoys the heck out of them. Some of her peers have sensory issues too, so you can imagine how this goes.
We’re just going to take things as they come. Keep talking and working through it. Role play if needed and keep teaching. All I wish is for her to find a lasting friendship. I know it will happen. We just keep hoping it happens sooner, rather than later.
If you’re at the same stage as we are, feel free to connect! We can help each other out!