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 posted on our Facebook page yesterday, asking if anyone else felt like crying. The response was amazing and this community inspires me everyday. Just knowing others are with you and support you means everything. I struggle with admitting or asking for help. When you are used to helping others, you hear and see their struggles. I work in a hospital now where I see people hurting physically and emotionally every day, and it’s hard to accept that my little sadness of having to home school is anything worth complaining about. It was more than just about homeschooling Grace yesterday. It was feeling emotional because I can’t hug my dad on his 70th birthday. I can’t celebrate the life of a legend, my grandma, who passed away during all of this. Seeing the teachers trying to teach with their own little ones at home needing their parent’s help. It’s being tired of seeing the disconnect and arguments between those who believe in Covid and those who don’t. It’s the fear for loved ones and strangers alike who may not get their life saving surgeries and treatments because the hospitals are overloaded and trying to prevent the spread. The obvious racism in this world, especially within the US at this time and what happened on January 6th. The difference between what happened at the Capitol vs. the Black Lives Matter protest. It’s hard to not get caught up in the dysfunction and sorrow. It’s hard to not cry about it.
So even though my difficulties may be small compared to what is happening in the world, I’m going to feel my feels. I believe we are all feeling things during these times. Albeit, different in comparison to others, we are all dealing with our own feelings. And that’s ok. So if you are like me and don’t feel like you have a right to complain or feel sad because in the grand scheme of things, you are fortunate to being living this beautiful life you are living, I’m giving you permission to feel whatever it is you are feeling. Cry if you need to cry. Scream if you need to scream. Laugh if you need to laugh. Then go and remind yourself what you have to be grateful for. Today, I am grateful for you.
Well, I’m sitting here by my christmas tree, enjoying the peace it brings. I love the calmness of the lights. But, I’m also hearing Gracie participate with her Community Living Teen group on a zoom meeting, decorating christmas cookies with her friends, so I guess it’s not that relaxing at the moment lol, but it’s still wonderful to hear. Her group leaders have been extremely creative in bringing the kids together, in a different way than they are used to.
I’m sitting here, thinking about how Christmas will look a little different for all of us. As much as we have missed our annual family Christmas party, the large gathering of family over dinner, and travelling to visit family who are further away, I’m reminding myself that different is okay. How often do we tell our children that being different makes the world a brighter, more beautiful place? Sometimes we need to be resilient and go with the flow of life. Sometimes we can be in control (if that’s ever possible living in a special needs world) and sometimes we can predict and prepare. This year is definitely not one that we are used to! As hard as this year will be, instead of breaking traditions, I hope to create new ones. Maybe now that my teens won’t be able to socialize with their friends this time around, we’ll spend more time watching Christmas movies together or maybe tobogganing or hiking. I’m not sure just yet what it will look like but I’m sure we can come up with something to do that will be remembered for years to come.
I don’t know about you, but holidays used to be our more difficult time with G because holidays bring surprises and sensory overload and busy times and rushing times and socializing and lack of a schedule, unpredictability and sugar! But, this year might be more peaceful for us and for you and your family, for the simple fact that…well, Christmas will be simple. Quieter and hopefully calmer.
I don’t hide the fact that it’s going to be very sad that we won’t get to see family and loved ones in person. I’m struggling with not being able to hug people. I’m a hugger. I don’t hide the fact that this will be the first Christmas without my Grandma and that we have other family members who aren’t here with us anymore. I think of those who will be alone at Christmas, those struggling with their mental health and those who can barely put food on the table for their families. Maybe this year we can come up with a tradition to help or honour some of those people. Life can be challenging and boy are we being challenged.
To those of you who have lost loved ones, to Covid, or not. To those of you who are struggling with your child’s challenging symptoms. To those of you who are not able to work or have had to close your small business. To those of you who aren’t able to spend the holidays with your loved ones as you have every other year. Please know that you aren’t alone. Every person in the world is dealing with this pandemic. Every person has their own challenges and stories. So please be kind to yourself. And please be kind to others. We don’t know what others are truly going through. And most importantly…
…please reach out if you need a hand. To me, to family or to friends. It’s okay to ask for help when you need it. We all need some help once in a while.
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!
It’s been a very long time since I published anything on here! Almost a year! I’ve been struggling a bit with what to write for so long because I don’t want to write anything but the truth. The good, the bad and the ugly! I feel that writing about our life story is the best way to help others understand that we are all in this together. If I can’t be honest, then what is the point? Social media is affecting so many people in wonderful ways but can also be so unrealistic! When I was dealing with health issues and feeling like crap, I could not even look at Reese Witherspoon’s IG posts! Her perfect outfits and perfect hair in her clean house with her happy kids and well behaved dogs! You know what I’m talking about right?? My house seemed to be in complete disarray and I didn’t have the strength to even do my hair for work let alone cook a delicious healthy meal for the family AFTER work! Are you kidding me?!? Seeing her posts plus the many others (even from real life people I know) was too depressing! The guilt I would feel for not being like that! It’s crazy, I know! Don’t get me wrong, I love Reese and I’m sure she’s had her fill of struggles too. But the perfect persona shown on social media was just too much for me to handle at the time! I also see many moms on social media who post videos of their toddlers and lives, and I LOVE their honesty! That’s what keeps me coming back to read their blogs or watch their videos. The problem for me is that my kids are teenagers and have a more “shy” personality. Mine get embarrassed if I show people their baby pictures let alone post it for the world to see! I’ve wanted to post about many things over the past year. Where Gracie was and where she is at today. The struggles that all 3 of my teenagers have faced over their high school years. The problem is, it’s not just my story to tell. It belongs to them too. I’ve talked to Gracie about how telling her story can help others, especially since she’s come so far. She shouldn’t be embarrassed by the things she’s done in her past, the choices she’s made or the struggles she’s faced because that has made her who she is today. And to us, she’s pretty incredible! She has agreed to share some things now and I will post them (with her permission of course) as often as I can. But for now, what are some things you would like to know? What are your biggest challenges and how can we help? Shoot me an email or comment below and we will do our best! I just wanted to let you know that we’re back. Hopefully with some inspiring info. that can help you and your family live a well balanced life!! Or at least somewhat balanced!
Fetal Alcohol Syndrome is caused when a woman drinks alcohol during pregnancy. It is a spectrum of disorders.
Fetal Alcohol Spectrum Disorder (FASD), Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurological Disorder (ARND), Static Encephalopathy Alcohol Exposed (SEAE), and Alcohol Related Birth Defects (ARBD). To go over each one would make this a very long blog post so check out the resources below.
My absolute favourite resource and the one workshop where I learned the most was from Jeff Noble. If you ever get a chance to hear him speak, make sure you do!! You will not be disappointed! You can check out his website here. He has a Facebook page called Fetal Alcohol Syndrome Forever w/ Jeff Noble. Jeff also has a couple of great books. They are the first things I would recommend you read. Check there out here!
If you are a birth mother, one thing to always remember is that you did not intentionally hurt your baby. Jeff Noble makes it very clear in the beginning of his workshops that no mother ever intentionally hurts their child. Don’t be afraid to seek help and speak to him. He is non-judgemental and very understanding.
G got a diagnosis of ARND. She will always need an external brain (support people) to help her throughout life. It’s not easy. She is so very aware of her surroundings and how a “typical” 14 year old behaves. What they are able to do and what she struggles with. It’s heartbreaking. But as she gets older we are coming to a common understanding of what she can do on her own and what she needs help with. She is appreciating the help more often than she used to. She doesn’t like it, but when she thinks of how life would be without our help, it frightens her.
Fetal Alcohol Syndromes are extremely hard. Hard for the child/adult diagnosed and hard for the family and those assisting them. There are success stories for those who have the support. Don’t give up and don’t be afraid to ask for help! You don’t have to do this on your own.