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!
“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 once heard someone (can’t remember who but would like to give credit) say that what the inside of your home looks like is just a representation of what is going on inside of you. I read that quote while laying in bed one night with a pile of laundry in a basket beside my bed that hadn’t been put away, some items on my dresser which just looked cluttered, a bag of clothing that hadn’t been unpacked from god knows how long before, and a pile of books. Some odd socks, a t-shirt or two, dust and more books under my bed. That quote really resonated with me at that time! I was overwhelmed and feeling burnt out. Struggling to balance home life with work life all while my health was suffering. I felt like I was drowning in a mess when I got home and I didn’t know where to begin. Yes I have 3 teenagers and yes they need to do more. And yes, I need to make sure that happens. But in all honesty, I find it’s just easier to do some things myself. They each have certain jobs, but definitely need more. At least that’s what I had been telling myself yet, feeling so drained with all that had to be done, I still didn’t get on them to help more. Thank god I have the husband I do, because he takes on A LOT of responsibility. Kudos to you single parents! I know it’s not easy! We’ve always had our own jobs that we just kind of started ourselves, but when I am not well, he takes my jobs on as well. Which adds to my guilt of not being a good wife, mom, housekeeper etc. To be honest, as parents we also have the role of counsellor, teacher, nurse and taxi driver to name a few. It can be overwhelming! And let me just say, my house was a perfect mirror image of what was going on inside me.
Covid sucks. I don’t deny that. It has hurt more families than I like to admit. But throughout the chaos going on around me, I always try to find the positive in it. Yes, my room (house) was messy, but I had a very cozy bed and roof over my head with a beautiful family to fill it. As for covid, well it allowed us to share family time with my teens that normally would never have happened without it. We were together for 2 whole months or more, just the 5 of us. Or 7 when my parents were at home. We had family dinners and hikes, conversations and movie time. We even built a fort inside and slept in it! The house was tidier and I felt I could balance life just a bit more even with working part time out of the house and part time from home all while homeschooling Grace.
Life was simpler. And calmer. I missed my students and still miss them greatly. That makes my heart sad. But being home part time has made me healthier. Physically and emotionally. What I began to realize was that I wanted to feel like this all of the time. When work started back full time, (I took a leave from the school to do crisis work in our ER at the hospital), I wanted to come home to a clean and tidy house. I wanted to feel peace when I walked through the door. I wanted an empty sink and clean counters. So, I signed up for Joshua Becker’s 12 week Uncluttered Course and over the past few months, I’ve decluttered so much out of my house. Several bins of garbage and recycling and donations. I still have a spare room full of donations to give away but with Covid, things were closed.
I have to say, I feel so much lighter! Our kitchen now only holds the necessities. Ever been to a resort with a kitchen? It has everything it needs and nothing more. Easy to find, easy to clean. My bedroom no longer has items that belong elsewhere. Having less stuff has actually given me more time. More time for the people and things I love.
I want to share anything I can that has helped our family. Not just what has helped Gracie but also what has helped us as her parents. We need to take care of ourselves too in order to take care of our kids. And decluttering our house has decluttered our minds. We feel so much more calmness these days. It’s still a work in progress. I currently have a family room downstairs full of bins with christmas decorations and seasonal boots, etc. waiting to be put back in my newly cleared basement storage area. I’m still trying to create better habits (and encouraging everyone else) to clean up after themselves, wipe the bloody crumbs off the counters and wash your dishes and put them away! But we’re seeing the light at the end of the tunnel.
If you are interested on learning how to live with less to give you more, keep reading.
Here are a few quick tips (from Joshua Becker) to get you started:
Go around your house with a garbage bag and fill it with stuff you know you don’t use and get rid of it. Donate, recycle or throw it out.
Clean out one drawer or shelf at a time if that’s all you can do in a day.
Also check out Project 333! This has really helped with laundry! No more piles! I still have to get my kids on board with this one! lol But the idea is to just take care of your own things. The rest of the family members will hopefully see and feel the difference you are making for yourself and want to make their own changes. So don’t worry if your child struggles with parting with things. You don’t need to worry about their things for now. Take care of yourself on this one.
Take a look at the FlyLady system baby steps for developing new habits. Best one so far…get dressed all the way down to your shoes first thing in the morning. There is something about wearing your shoes that makes you think you need to go somewhere. And you do! On a tidying up mission!
If you prefer videos, check out the Secret Slob on YouTube. She follows the FlyLady system and will walk you through it.
Lastly, if you are looking for more decluttering tips, watch The Minimal Mom.
I hope this helps you mamas and dads out there. Grandparents and caregivers too! Happy Decluttering! xo