With all of the back to school posts, university and college students moving away and last summer weekend fun shown on social media, I became very mindful of the comparison that can happen when scrolling through those sites. I enjoy sharing trips and accomplishments and photos as well, as this makes it an easy way to share with friends and family. Even our Well Balanced Life posts are meant to share, inspire and support, but this too may have someone comparing their own life or child or situation to what we experience.
I just wanted to remind you that you, your child, and your family, are perfect in your own imperfect ways, just the way you are. I wanted to remind you that communicating (even non-verbally) for the first time, is just as big of an accomplishment as going off to college. Tying your shoes at the age of 15 is just as successful as moving away from home. Hearing the words “I love you” for the first time, stepping bare foot in the sand, going to a mall, swimming, even sitting calmly for more than a few minutes, can be such a big accomplishment for our kids. And they grow at their own pace. They mature. And they may still struggle as adults. But it’s important that we don’t compare them to others because they have their own path. Not one person is the same. Don’t we teach our kids this all the time? How boring life would be if we were all the same? Dare to be different. Don’t worry what others think. It’s funny how we, as adults, do this often.
As I age, I care less about what others think. But I’d be lying if I said I never cared. It’s human. We’re human. But it can make us lose sight of what’s important. And makes us forget how far we’ve all come.
If things are tough right now, please know you aren’t alone. This too shall pass just like every other challenging time you’ve experienced. You’ve got this!
And, if no one has told you yet today, let me say: You are an amazing mom. An amazing dad, sister, brother, person! You are appreciated. Loved. And respected.
We are wishing all the best to the kids starting school, parents, homeschool parents and all of the siblings out there. You are ALL amazing!
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.
For years, Gracie struggled with waiting. Patience was not her strong suit. Gracie liked to do things when Gracie liked to do them. And when she wanted something, she wanted it now. I can say that those feelings probably haven’t changed. However, her reaction to them has. Screaming, yelling, spitting, and hitting. Bending her joints, scratching herself and pulling her hair. Those were her ways telling me she was done and that she didn’t want to wait any longer.
When eating, Gracie used to throw her dishes across the room when she was done. Made sense to her. She was done and didn’t have the words to tell us. Quickest way for them to disappear is to throw them. Being in a restaurant Gracie would finish her meal in less than 5 minutes. Then, scream, because she was ready to go even though the rest of the family still had most of their plate left to finish.
Standing in line at MarineLand, the Ferris Wheel, Maid of the Mist, Wonderland, or even waiting for her turn on the swing or slide at the park or school was torture for her. Gracie didn’t have time to waste and she continues to always think ahead rather than stay in the moment. Not having the words to express herself was another reason for these reactions.
So, we started small. I mean, very small steps. We started with counting to 10 when she was done. Before she had the chance to eat her last bite and whip that plate across the room like a frisbee, I’d grab it, count to 10 and let her out of her high chair. We counted to 10 for several days before moving to 15 seconds and then 20 seconds and so on. Once we were getting to about 40 or 50 seconds, I bought a timer from the dollar store and we put the timer on. We still counted with the timer at the beginning until the beeping alarm went off. It became a game for the whole family. The kids would join in with counting and big smiles. Once we mastered the timer and she could wait 5 minutes, we attempted it at a restaurant. I would call ahead and order our food because the timer had only been practiced at the end of her meal. Gracie was able to successfully join the family, eat her meal and wait 5 minutes at a restaurant, then her dad or I would take her outside or to the car while we waited for the others to finish their meal in peace. We continued to do the same thing with the timer as we did with the counting. Increasing by 30 seconds at a time. Beginning at home and practicing in public. We had timers everywhere!
This strategy worked for waiting in lines as well. We would still get the pass that was offered to those with special needs, but we would make sure to not use it for the rides with a much smaller line. Having a timer on (we added a few more minutes on than expected just in case) would help Gracie stand in line. Seeing the numbers decrease was all she needed eventually. Of course we had snacks and fidgets, etc. But seeing the time count down reassured her that what she wanted was about to happen.
Today, Gracie waited in a line to advocate for herself to get the pass at Wonderland. She explained to the lady that she has autism and has a hard time with waiting longer than 45 minutes, noise and crowded spaces. All while dad was laying in the grass on a hill, reading a book, in the parking lot. This is something to celebrate!
Our Christmas this year was spent at Lake Louise with the 5 of us sharing one hotel room and spending every minute together. We didn’t know how this was going to work out. They love each other. But let’s be honest, they each have their own needs, likes, dislikes, and routines. And one of them (miss Gracie) can get very excited and anxious over a change in her routine. And no matter how much we try to prepare her, there are always unexpected mishaps that occur. A lot of patience was needed in order for this trip to go smoothly. And smoothly it did. For the most part. I was so amazed at their level of patience and friendship with each other. I don’t know if it’s because they are all growing up and maturing or just plain luck. I’d like to believe they’ve matured.
Gowing up wasn’t always easy. Having three kids and only two hands made it difficult to be there for all 3 at the same time. The screaming and meltdowns, refusals and challenges were at their peak when Gracie was younger. Screaming in the middle of night and waking the entire house up made it difficult to get a good night sleep which made dealing with those challenges even harder. For everyone. The kids got good at going to their rooms and shutting the door to minimize the noise. Emma was more of a helper if she thought she could help calm her. She became Gracie’s go-to person at school. And when Emma graduated from high school, Josh took on that role.
I know we can worry about siblings having to grow up faster, feeling pressure to behave more or do well in all areas of their life, taking on more responsibility than a child should, and we worry about not being able to meet their needs when they have a sibling whose needs exceed theirs. Especially if there are health related concerns that require you to travel to doctors appointments and hospital visits. But what can happen is each sibling becomes more patient and understanding. Non-judgemental and kind to others, helping those who are in distress. My kids aren’t perfect and I know as they were growing up, they’ve said or done things that I wouldn’t be proud of. But behind the scenes, they’ve done some pretty amazing things that have helped others who didn’t feel like they fit in or were struggling with life, in tremendous ways, and little ways, that know one else will know of.
Please know this post is meant to share with you the growth and positive outcomes that can arise as the kids get older. It will be okay. You’ve raised great kids! Trust that all you’ve taught them will present itself. And if they can’t stand each other right now, they will soon enough!
If you haven’t been told this yet today….YOU are a GREAT parent!
Ok, I know I just posted a new blog post yesterday. And I still feel the same way and true to what I wrote. BUT…I had this a-ha moment as I was doing the hashtags on the Facebook group when posting the link. Specifically the hashtag #whenisteachingtoomuch…the same wording as the title. My first thought was, “Am I teaching or correcting?”
I’ve always seen it as teaching her. Helping her grow. She has to learn these life skills if she’s going to live without me someday. She has to know how to PROPERLY do these things. But does she really? If she manages just fine when I’m not with her every single moment, does she really need to do them properly? And what does that even mean? Properly. My way? My way of doing things doesn’t mean that she needs to do them the same way. Even though I like the dishwasher filled a certain way and she may leave cups facing up that get filled with water, but hey, they are still getting washed, even if a little bit LOL Does that spatula need to go in the drawer that I’ve allocated it to? It’s still put away, even if it’s in another cupboard. Looking at these sorts of things and picturing her in her own home someday, I realize that she will be just fine! The kitchen, living room, fridge, etc. are not her space. But, she knows where everything is in her own room and manages to do a fine job of keeping herself organized.
She is keeping track of her work schedule by printing it out and adding it to her calendar. She plugs her phone into its charger each night so it is ready for the next day. She makes sure her uniforms are washed and clean and ready to go for her next shift. She showers and uses soap, even though we are starting to notice she’s not rinsing her hair long enough, so that is something I can teach her about. The constant correcting is probably equivalent to constant put-downs. And I get reminded sometimes by Gracie that “I’m on her a lot today”.
I am grateful she has the words to tell me that when I need to hear it. And if your child doesn’t have the actual words, watch their body language. The eye rolls, the vocalizations, stimming, ignoring, whatever they do that shows you they aren’t happy…you know your child best.
I think for myself, I’m going to actually write down the things that are my “pet peeves” list that won’t matter if Gracie does them when living in her own home. I will try to focus on the things that will make a difference if NOT done “properly” like hygiene, cleanliness, and safety.
This isn’t going to be easy! I’ve created a habit that will be hard to change. But I’ll do my best. I’ve also heard that for every negative comment a child receives, they need four positive ones to counteract that. So I best get my lovin’ on!!
Thanks for listening! Sometimes just saying things “out loud” or writing them out helps me see the bigger picture.
The last thing we want is for our kids to feel like they are not good enough. But I have to say, I was someone who, unintentionally, consistently crushed Gracie’s confidence, every time I tried to teach her the “appropriate way” to do something. I think I still do. I know I do! It’s just hard to admit. My heart was in the right place. If I could teach her these life skills and help her be the most independent person she can be, her life will be full. I just need to figure out what a full and happy life means to her. It’s her life. Not mine. I forget that sometimes.
Correcting her has actually become an automatic response, even though I’ve been trying to “teach” the same things for years! As a parent, it just seems to be in us to instinctually teach our young. Even when I make myself consciously aware, and tell myself I will let the small stuff slide, I can’t go 5 minutes!
I did become aware of this when I saw her sweet soul defeated. Grade 7 & 8 were the hardest years of her life. Not only did she have a mom that was on her at home, but she also had support staff trying to help her. Yet, she didn’t want to be different than her peers. She was embarrassed to need the help. That developmental gap between her and her peers had been growing since grade 2 and was at its peak! She was now considered weird for liking Treehouse tv, Scooby doo, and Santa Claus. The demands and expectations for someone her age grew and grew.
At times, I wish I had done things differently. I do, however, realize that my reactions were based on fear. Fear for her future and wanting the best for her. I needed (and need) to remember that she learns a different way. Her actions aren’t out of spite or a wish to push my buttons. (Even though it often felt that way!) But when I look at her “behaviour” as brain-based “symptoms” and see her at her developmental age as opposed to her actual numerical age, this helps me tremendously. I still need reminders though! It’s hard when you live this life of autism (or insert diagnosis here) day in and day out. It becomes your new normal. So if you are feeling guilty because you aren’t getting along with your child, or you are feeling more frustrated than normal and just don’t know what to do at this time, try looking at your child with a different lens. See their actions as symptoms instead of behaviour. Obviously, intervene when appropriate, especially when there is aggression.
Teaching our kids proper etiquette, manners, cleanliness, self-advocacy (in a strong, firm but kind way) are a few of the skills they will need to excel in this world they are forced to fit in to. We have to teach them because the world isn’t going to change for them. Just try and remember to meet them where they are at, try not to take it personally, and react in a frustrated way. But also, don’t be hard on yourself when you do react. You’re human. It’s okay.
This developmental age is something I keep coming back to because it helps me help her. Here are some links to past blog posts, when I’ve written something similar:
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!
Mental health has been a hot topic these days with the pandemic and online learning and oh so much more time spent together! Isolation and some losing the social skills they once had. It’s a tough time. No question about it. Anxiety and depression are increasing, children who were receiving support in person are now doing it by phone or video (or not at all), some people have lost the social skills they have worked so hard to gain and some are having more positive experiences of feeling less overwhelmed by crowds and expectations. We all deal with stress in our own way and as many of you know, our kids can show their frustration, sadness, anger and fear in so many different ways! Here are some links with resources to help your child, teen, adult or…yourself.
Breathing Exercises – Once your child knows about “smelling the flower and blowing out the candle” breathing, you won’t need the videos and you can do this anywhere. The trick is to practice them when they aren’t at a heightened moment.
GoNoodle Guided Relaxation for Kids! GoNoodle has some great relaxation and movement exercises for kids. Check this one out below!
The link below has information and strategies on several mental health topics. There are worksheets provided in a Module format. Go to Resources and Looking After Yourself.
We had a meeting with a couple of people at Gracie’s school a few months ago regarding the transition to adulthood. CLH, formerly known as Community Living Huronia, was present to go over the Developmental Services Ontario (DSO) and the Ontario Disability Support Program (ODSP). Basically we were discussing what we thought life would look like for Grace. Would she live on her own? How much support will she need? Will she qualify for support through DSO? What are her future goals? This was an emotional day. We used to think Gracie would need constant support. But today, we feel she could live on her own with weekly support, help with paying bills, budgeting, making sure the house is clean, etc.
Gracie has two siblings, both who are off to travel and begin post-secondary education. Gracie wants this opportunity for herself SO bad! And I don’t blame her! She has worked super hard all these years to get to where she is today! Her goal was to go to college and that has now become a reality. She will apply to the Community Integration Co-op Experience (CICE) program at Georgian College when the time is right. I contacted the school to see if residence would be an option for her (she really wanted to do this) as she would definitely need a bit more support, especially with someone looking out for her, and finding a roommate that she could be herself with. Even though they have a program that suits her needs, they unfortunately don’t have any type of support for residence to get the full college experience! So today, we are creating her own apartment in the basement of our house. A place where she can practice caring for her own space, budgeting, meal planning, cooking and entertaining. With the other two moving out and their understanding of Gracie’s desire to have the same experiences, Emma gave her room to Gracie so she can have access to the whole basement. We’ll share the before and after photos and take you with us on our journey to adulthood!
Our privilege to do this doesn’t go unnoticed. I know not everyone has the space, time, money, partner or ability to do the work that needs to be done. There are some funding options to do this with Passport/DSO and ODSP which I I’ll see if Aaron can talk about later on. But the cleaning, meal planning, budgeting etc. are all things that can be done within the home and I hope we can help inspire you in some way to help your teens/adult children with a bit more independence. I’m sure we’ll be making cleaning checklists and recipes and/or meal planning sheets etc. If you see something that may be of use to you but you need it in visual format not just text, let me know and we’ll see if we can create something that best suits you and your child.
Honestly, I can’t believe I’m even writing about adulthood! I know many of you have young children and I’ll be sure to still share those experiences as well. But again, feel free to reach out if you need some support!
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!