I had an amazing day today with my best friends! I often forget how good this is for my soul. We all have busy lives. Especially if you live in a ‘special needs’ world.
I’m grateful that we are in a place now where Gracie is more independent, making it easier for me to make this a priority. But, I remember when it wasn’t as easy. My friends were always so great to continue inviting me, even when my answer almost always had to be “no, sorry.” But making the time to say “yes”… That is priceless and healthy in so many ways, and I wish I had said yes more often. It would have taken some figuring out, but it could’ve be done.
I am very fortunate that I have friends that I’ve known since we were in diapers and friends that I made in elementary and high school. There’s approximately twenty of us who get together at least a couple of times per year. Friends that I may not see for months on end, but when we are together, it’s like we’ve never been apart. They are friends who will always be there for one another especially in times of need.
I want to encourage those who are reading this to find your people and prioritize those friendships. If you can spare even 5 mins. to drop off a tea to your friend (even if your child is in the car with you), schedule a lunch or dinner date, a quick phone call, a walk, swim, craft night, wine night, book club, concert, or even have your friends over. Regardless of what your house looks like, regardless of how tired you are or how early you need to wake up in the morning (or in the night). Short visits are better than none. And I promise you, your heart will be full.
I understand it can be hard to remain friends with others who don’t understand your situation and the challenges you face. Or if you’ve lost your friends because time has just flown by without you reaching out and you feel too much time has passed. Try reaching out anyway. If you were once friends before, I truly believe they would happy to hear from you, regardless of how long it’s been.
You can also try attending support groups or skill building classes with your child/adult and meet other parents. If anyone will understand that plans may need to be altered, rescheduled, or even refused, it’s someone living a similar experience as you.
Remember that you can only take care of others, if you’ve taken care of yourself. And the people you surround yourself with, that love you and bring out the best in you, help you be the parent that you need to be in those challenging times. It’s not selfish to make this time for you. So here’s your gentle reminder…
You deserve to have a life filled with love and happiness that isn’t always provided by your immediate family. You deserve to take the time you need to recharge. You deserve to have time with others who fill your cup.
I was thinking today about Gracie’s different developmental stages she seems to have. At times she can seem as young as four, sometimes she’s a total teenager or trying her best to be like one, and at other times, she’s so insightful you’d think there’s an older, wiser woman speaking. This can make things difficult for others to understand her struggles. Especially when it comes to teaching, either at school or training at work. Masking, often common among autistic girls/women, is another symptom that can prevent others from knowing their autistic peers’ true selves/abilities. Gracie can have a very mature conversation with someone, describe a situation or answer a question at school but not fully understand what she is saying. Even when it’s in the proper context of a conversation. Her expressive skills are much higher than her receptive skills. In some ways this has helped her to fit in or get the job. But at other times, when her younger self appears, this can cause looks, misunderstandings (including at home, which will turn to mom, yep that’s me, getting frustrated), or contribute to Gracie’s own self-doubt. Luckily she loves herself and self-doubt creeps up very minimally, but on the way to meet Bluey today, she was a bit embarrassed because she’s 19 and going to the “little kids zone” at Wonderland. I reminded her how awesome she was and how many of us wish we still had that magic of our young selves still living inside us. “You be you” because “you are incredible”. She only needs to hear that once and she’s right back to her young self. Jumping up and down screaming about how excited she is to see Bluey, and telling everyone around her. There were a couple of kids who looked with curiosity, but no rudeness. Parents were smiling and engaged with her infectious excitement. And this made me wonder if times had changed. If people were becoming more accepting. Or, is it that she is older now and it’s more obvious. The “disability” isn’t as invisible anymore. I’d like to believe it’s the former.
Gracie started out with receiving Intensive Behavioural Intervention (IBI) from the age of 3 to 6yrs. of age. I’ve mentioned it before, but in case you are new here, we didn’t know if Gracie would ever walk or talk. So being able to walk, talk, go to the washroom independently (sort of), sit at a desk for a period of time, get dressed and follow direction was just a few of the skills she learned to do before heading off to school. She needed a lot of one on one support when she first got to school and eventually that would get cut back, especially once she got to high school. Fortunately for us, Gracie’s EA support getting cut back later on was a blessing for her (much to our surprise). She was able to learn to do things on her own as she had become very dependent with having constant help. A little bit of learned helplessness I would say. But, I wouldn’t change anything because she DID need that support for the time she had it.
Elementary school was amazing in the primary grades and then the gap started to get bigger and bigger. Gracie went from fitting in socially and academically (to a point), to not fitting in anymore. Her quirks, meltdowns, honesty, sensory issues and stimming were no longer cute anymore. Her “special needs” became more apparent but she didn’t look like she had special needs. The harder Gracie tried to fit in, the weirder she seemed to her peers, the further they backed away and this awful cycle of her trying to fit in got even more awkward. Her confidence plummeted. She started to see the difference between her and her peers and was embarrassed to have an EA. By the time grade 8 came, she was such a sad girl with zero confidence, no true friendships and began to push the EAs away. She was trying to figure out who she was and where she belonged.
High school began with excitement and fear for both of us. The fear of having all new people try and get to know her. How she learns, interprets the world around her and what type of support she would need, not only academically but emotionally as well. With team meetings, we figured out a good routine on how to inform all staff about her learning style and de-escalating her frustration. The social aspect of school was difficult at first but I’m happy to say, she found her way. Gracie tried the first few days of school to fit in with the “cool” kids. She sat at the table with them at lunch, talked to them in the halls and they were great with her.
Now that she was older, her “special needs” was showing up again. She was now a little girl in a young woman’s body. She became more “accepted” as it was clear she had autism. It’s funny how different humans treat one another if they know you have a diagnosis or not. People seem to be much more understanding if they can see your disability versus an invisible one. This is why it is so important to be kind to one another all of the time. You just don’t know what someone is going through.
One day, Gracie came home and said she was sitting at the table in the caf with some of her friends. They were nice to her but she couldn’t understand a word they were saying. She said “I know they were talking about boys and stuff, but they talked so fast, I just couldn’t keep up”. We had a discussion about her having autism, the challenges but also the blessings. We discussed the special needs room and the kids that are a part of that community. We told her having just one friend that truly gets her and loves her for who she is, is way better than having a 100 friends that are just “there”. We suggested she get to know some of the kids in that community and see how she makes out. Finally, she took our advice and found unconditional love and friendships that lasted!! This was the first time she had kept friends for a long period of time. I mean, we’re going on 4 yrs. now! And I mean, really good friends. I tear up or flat out cry every time we got together (before covid) for a birthday or gathering. Watching their friendship warms my heart like no other. Hearing the kids talk to one another, treating each other with respect, not noticing or being phased by each other’s quirks, stimming or challenges is something I can’t even describe.
So this my friends, is why it is SO important to embrace their diagnosis and make it a positive thing! I know it can be hard as a parent to see your child’s struggles. But they aren’t defined by those struggles. They should be defined by the strength and perseverance they go through. The little things in life that they find blessings in that most of us take for granted. The little miracles that we get to witness, seeing them accomplish something that we didn’t think they would be able to do. Being happy, loved and accepted. That’s what I wanted for our girl. Academics will come. But feeling like you belong…nothing tops that!
Wowzers! This back and forth lockdown is challenging! My girl remembers the dates for EVERYTHING! She can even tell you what day of the week it was, let’s say, on April 4, 2015! As long as she has some memory of the activity we did on a specific day, she remembers the exact date. And quite often, she expects to do the same thing on that day each year. She’s makes “anniversaries” out of everything. So when Lecce says the schools will reopen after their April spring break, she knew it was a crock! She kept anticipating that the school would be closed because it was closed last March break. If something happened once, she believes it will happen again. As much as I’ve tried to teach her over the years that this is not the case (so she doesn’t need to stress about bad experiences happening again), this Covid year has totally made a liar out of me! For a girl who HATES change and needs warning, especially before totally turning her world upside down, I have to say, she’s handled it better than I expected. But, poor thing was eating an ice cream cone the other day, started laughing about something and broke in to tears! It had finally caught up to her. She had no idea why she was crying…but I sure did. This third wave has us all exhausted and frustrated. She doesn’t want to do online learning. She hasn’t been able to spend time in person with her friends. She is still waiting to see if she will get to go to camp this year. (She doesn’t believe it will happen because of last year’s cancellation). Even though Covid hasn’t changed her life too much (compared to others who work or go out all the time) to her, this is big. Just being told she can’t go anywhere, even though she rarely does, doesn’t sit well with her. Before it was on her terms. Now it’s not.
I wish I knew what the answer was. I wish I knew what the outcome will be so I could give her warning. But I don’t. So today, I think we will go over several possible scenarios and come up with a plan for each one. A list of fun things we can do, know matter what the outcome. It’s the best way I know how to prepare her. I’ll post our list on another blog post once we get it done to share with you. At least this way, she can be prepared as best as possible. If you have any ideas on how you’re handling the lockdown and the unknowns, please share in the comments! It would be great to hear from you!
“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 that 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 hear from you! Feel free to share in the comments section.
Wishing you a wonderful night!
Update: Click here for the developmental age post.
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!