In true form, it has been a while since my last post as an inconsistent-mom-blogger, but I have suddenly found myself with more time to write as I am off on a bit of a leave from work and school. The good news is, I am not bored because I have a lot to reflect on, especially as a parent left trying to make sure their kid has what they need to be safe for next school year.
I usually try to err on the side of support vs. advice giving, but I’ve had so much floating around my head these days that I have 10 considerations that due to my current circumstances, I have come to recognize as worthy personal considerations worth sharing with other parents of kids with disabilities:
1. If you feel like giving up, surround yourself with a tribe of people who ‘get it’ and that you can vent to.
2. It is more work to raise a child with a disability because of how the world does not understand or plan for disability, this is not your child’s fault.
3. Take on the ‘big system fight’ when you can but don’t feel guilt if all you can do is fight for your own child.
4. You do have allies within these systems, but sometimes you have to look really hard to find them. They could be a lunch program supervisor, an educational assistant, a School Trustee, teacher, superintendent, etc…
5. Remember that your child is a precious human being, just like those without disabilities, don’t let all that talk about what your child can’t do or does inappropriately keep you from seeing them as precious.
6. People will always have advice for your, if you feel it’s unwelcome, judge people more by their intentions and less by the quality of their advice. It might be good to keep your distance from those with ill intentions. You don’t have to make everyone happy, but those with ill intentions can cause undue suffering if you give them too much room in your life.
7. Take care of yourself. Burn out is a real thing. Your health is important. If you are not around to love your child and help the world understand your child has a place in it, that would be a huge loss for everyone.
8. Celebrate what your child with a disability brings to your life, and let others hear about it. So often when working with professionals involved in our children’s lives, we forget they are not a problem to be dealt with. Their value is not based on report cards or how many IEP goals they attain in a year, don’t let anyone forget it ❤️.
9. You will fail at being everything your child needs. This includes what educators, child care providers, health care practitioners, mental health providers and other practitioners might request of you. You are not super human and at the end of the day, you may not be able to do it all. It is better to change one’s expectations than to die trying to meet the unrealistic gold standard.
10. Cry when you need to. Life can be hard enough without kids! Take a moment and let out what is causing you suffering somehow (maybe not crying if you are not a cryer) find someone to talk to if you need to. There is no shame in getting external help. Just make sure it’s the right kind of help for you.
That’s all I have for today folks. Much love to y’all.
#parenting #parenthood #motherhood #disability #childhood #autism #adhd #asthma #anaphylaxis #coldinducedurticaria #mentalhealth #burnout #advocate #advocacy #safety #socialmodel
This time around I will also give my children names to make writing about our family easier; we will call my oldest son Napoleon and my youngest son Coyote. Napoleon is now in 5th Grade and loves to build complex structures, swimming and collects all things unusual, Coyote has entered Kindergarten and loves Taekwondo, skateboarding and cracking the most hilarious jokes.
Since I last wrote, so much has happened…far too much to contain in the words of a single blog post. Life has ranged from absolutely amazing to incredibly dark and uncomfortable. The Coles Notes version sounds like this though: I finished my social work degree and started working for an awesome non-profit organization. I survived something very wicked that caused me PTSD and left me damaged but stable. I lost one of my best friends to a difficult parting of ways. My husband and I celebrated 10 years of enjoying the calms and surviving the storms of life and marriage together. I have gotten to know some of the most amazing moms that I am happy to count as friends. I celebrated 18 years of friendship with two women I call sisters. I have embraced the chaos our family brings to the world and celebrate our differences. I have had to suck up my desire to avoid conflict and fight for my children to have their educational needs met. We officially went from poor to not poor. You can trust me when I say I have spared you many details, but you get the gist of what you missed.
I am so glad to be back writing here. Our life is not perfect but it is never really dull and I enjoy sharing stories and thoughts about what goes on in our family. I will not sell you lollipops and rainbows here. I won’t pretend that we have our lives all sorted out or that we are the best example of how things are done. Our life is chaotic, fantastic and still less than perfect but I look forward to sharing it with you.
As our family life changes and becomes more challenging, I am finding it more and more difficult to write about life. Yet, I’m sure the things we have encountered as a family are not unique. So I am going to push myself to write about them, knowing that as ‘different’ as our family is; we are not alone.
As parents we often start with these expectations of how things are going to be, how our children are going to be and how we are going to be with our children. We enter into parenthood with ideals, pictures and examples of what we want our lives to look like. We buy or do things because they are supposed to help, we avoid things because they may harm, and most of all we stack ourselves up against how other families are doing. Unfortunately, it’s these ideals and expectations that can cause rude awakenings for families who are less-than-perfect.
I’m not exactly sure when my rude awakening to our not-so-perfect family occurred, but I do know it was followed by depression. I never wanted the same struggles for my children as I had, and I certainly didn’t want more challenging ones! When you first discover that the mental pictures you have painted of your family are not quite accurate- disillusionment can ensue. Rude awakenings can occur, crushing parental expectations for many reasons: whether your child has to wear glasses, has anaphylaxis, asthma, juvenile diabetes, acid reflux, still wets the bed, has wicked temper tantrums, a learning disability, adhd, autism and any other type of disability, or even something that makes them just a little more ‘challenging.’
Upon realizing that one’s family is less-than-perfect you begin the process of becoming comfortably uncomfortable. For me, this process started off slowly, beginning with acknowledging that my first born did not like to sleep and that I, in turn, was not rested and losing my footing. Eventually we added more less-than-perfect’s to our lives some of them drastically impacting the way we socialized with others. When you’re forced to ask people who are around your son to not bring snacks or serve food that might have peanuts in it, or asking people to wash their hands before they play with your son’s toys, it often becomes easier to withdrawal than risk being treated as an inconvenience. For me, this fear was further magnified with the emergence of behaviour that didn’t always fit the mould or environment our son was in. We became that family that others stared at in the grocery store because their child was having a meltdown.
The second part of my journey to becoming ‘comfortably uncomfortable’; was accepting that it’s okay to be different. I was a quirky child, my husband was quirky child, we are quirky adults and our children are…that’s right; quirky. It’s not that everything about being quirky is difficult, but the difficult things need to be acknowledged and honoured. For myself, being able to acknowledge the things that were not going well, was made easier by looking at the difficult and amazing parts to being ‘different’ at the same time. For instance, I would say: It is painful when my son has melt downs over pocket lint, but it’s hilarious that he loves to dress as the Undercover Boss. Framing struggles with a bit more context often helps to make things a little less depressing. I love both my sons, and they do not have to be perfect or like everyone else for me to accept and love them.
The third part of this process that I really needed to go through, was to accept help when things were beyond me. It does not make you a bad parent to admit you don’t know how to deal with something. Once you are able to acknowledge the ‘differences’ in your family; it becomes easier to embrace support when the difficult parts of these differences interfere with your family functioning. Whether the help comes through family, friends, counselling, occupational therapy, specialists, medication, etc., there is no shame in admitting the challenges may be a bit bigger than you thought. It’s scary to get help, because sometimes getting help means being judged or giving a label to a struggle; As much as this potentially opens the door to a lifetime of preconceived notions and criticism from others, it is important to push through until you have the support needed to improve things. One of the things I want for my children as they grow up, is to become the most well-adjusted adults they can be, but to do this we may need help along the way.
The part of the journey to becoming a comfortably uncomfortable parent that I am currently at is where I am learning to embrace people who cherish my children for who they are. We are so lucky to have people in our lives that understand what being different is like and get a kick out of it. Usually these people can take the difficult parts to being different in stride. They don’t talk about how awful your child(ren) are behind your back, or about how you as a parent have failed or are doing things wrong. These people are the ones who find joy in playing a role in your child’s life, and who don’t treat your child as a half human due to their differences. I feel so fortunate to have these people in our lives; they make it easier for us to embrace both the good and bad parts to being different.
In this journey, my children have been my main teachers as I learn to be comfortably uncomfortable. They have shown me that life doesn’t have to be perfect to be good. Sometimes all it takes is the simple pleasures and small victories to bring us joy. I accept and expect that there will be many bad days to come, which I suppose makes it easier to be grateful for the good ones. I embrace that our family and my children are not what I imagined them to be- and I am okay with that. I acknowledge that for me, parenthood will be an ongoing challenge, but for now I will remain a comfortably uncomfortable parent in my less-than-perfect family.
P.S. If you feel alone because of what makes you different, remember; different is the new normal.
We have lived without peanut butter in our home for the last three years. If you had known my partner and me three years and two months ago, you would have seen peanuts and peanut butter as a daily part of our lives. Peanut butter and butter sandwiches , peanut butter and jam sandwiches, peanut butter and bananas sandwiches, peanut butter and crackers or apples, peanut butter squares (or as my partner would argue, butterscotch squares), peanut M&M’s, Reese’s peanut butter cups, peanut butter and chocolate ice cream, thai food with, you guessed it- peanuts! Just writing about them makes me hungry.
Shortly after having my first, I remember being with some fellow moms/friends and they were talking about the idea of introducing peanuts to your toddler in a vehicle just outside the hospital; I thought this was the most paranoid idea and giggled to myself a little at the image of feeding my son a peanut butter sandwich in the emergency parking lot. I thought to myself, why bother being paranoid there is such a slight chance of a child being allergic.
A year or so later over Christmas holidays we flew out to see my brother in California. On our way there we had a lay-over, and since most air lines were no longer serving meals we picked up a meal to tie us over on the next flight. I went to a really cool Thai restaurant and got myself a delicious peanut-y stir fry. I had barely eaten all day and I was starving! After getting our family seated but before they safety exit spiel, I took out my delicious peanut-y stir fry and dug in. Now I know what you’re thinking, my son ended up having a reaction and we were forced to get off the plane and go to the hospital and I can assure you this is definitely NOT what happened. But the flight attendant got on the loud speaker and asked all passengers to please refrain from eating peanuts for the flight as there was a “little guy” with a severe peanut allergy on board. I finished chewing my mouthful and lidded my delicious peanut-y stir fry. I was a little disappointed and starving, if I had only known earlier I would have got something else to eat!
A month later I tried feeding my son a peanut butter cookie for the first time and he was not interested, a few days later I was able to get him to eat a pint size amount of peanut butter and no reaction! Hooray for us! Oh wait, reactions usually happen on the second exposure!?! The next day I slathered apple slices in peanut butter but he would only eat a miniscule bite! That’s when I realized the joke was on me. I spent the next few months in denial, saying “It could have been the apple… right???” Once diagnosed we began a purge of our home, threw out jam, ice cream, a food processer that I used to make our own peanut butter in, all things that could have been cross contaminated and anything that said “may contain traces of…” or “contains traces of…” or “contains…”
Which now brings me back to the three years later, or as I like to call it; now. One of our other peanut free families in our son’s class gave us a sample of this soy butter to try saying it was just like peanut butter. Now, we have tried almost every kind of soy nut, sunflower, blah blah blah butter you could think of and nothing has even come close to passing the test. I opened up one of the samples and dipped my pinky in it, “WOW, you need to try this!” He did the same and gave the same response. It smelled, tasted and even looked like peanut butter.
You could hear our youngest in the background parroting one of his first words, “Wow, Wow, WoW, WwwwooooowwwW” I grabbed the bread and jam and made my son’s sandwiches for lunch. We held our breath as our oldest, Mr. Anaphylaxis to one bite after another, hoping this wasn’t some cruel joke and his face would start swelling up because we had actually just given him peanut butter. But the only thing that happened was that he finished his whole sandwich and asked for a drink. WOW.
Not the funny thing in all this (and I’m not really one to promote brands of anything via blog) is the name of this stuff, Wow Butter. That’s right! So the aftertaste gives off a very slight hint of soy, but we had never tasted something so close! We got online as fast as we could and looked it up to see where we could find more. It took a half day to track it down, and when I finally found it, I bought 4 jars.
Now for the scary part: As much as we were in awe of this stuff, a knot formed in our stomachs… how are our teachers supposed to know the difference between a peanut butter and Wow butter sandwich. Obviously a teacher wouldn’t question the sandwiches we have labelled and sent with our son, but what about non-allergic children? We thought they should maybe make it green or blue, but then you look right on the jar’s lid and it says to label all sandwiches made with wow butter and the website encourages parents to send information from their website to their school. The other scary part: is our son supposed to know the difference? If it smells, looks and taste like peanut butter, is there a risk that he will get confused? It’s amazing how something that has been created to help us also forces us to adjust our family rules for the sake of risk reduction.
We have decided that this fear of potential mix-ups will not keep us from recommending Wow Butter to others, but we will ask kindly that if you do find a use for Wow Butter; please oh please label your children’s sandwiches every time. If someone has to ask please don’t take it personally because it’s really that amazing.
Check it out: http://www.soybutter.com/
P.S. Did you know that hand sanitizer does not get rid of peanut residue?
We recently said goodbye to Great Grandma (GG) as she left us very suddenly a couple weeks ago. Our oldest son (almost 5 years old) had the opportunity to visit GG in the hospital before she passed away, and her illness gave us opportunity to prepare him for the inevitable loss of our beloved. He had many questions and thoughts on the idea of GG dying. Upon her passing, everyone had their own input to offer him about where GG went and what happens next. At one point my son and I had a long lasting disagreement in the grocery store about whether or not GG was a zombie.
My husband and I struggled with whether or not to include him in the funeral, at one point we were going to bring him until my mom made a really good point. Her thoughts were that instead of trying to fit Ajax into an adult way of saying goodbye at a funeral, we create our own way of helping him say goodbye. What a brilliant idea. So over the next few days we encouraged him to draw some pictures and write some notes of what he would like to say to GG on our Goodbye GG Day. We answered his questions about what will happen to GG’s body now that she was dead and allowed him to express his sadness.
On the day of the Funeral, my parents watched both the boys, so that we could be there for my husband’s family. The funeral was a traditional French Catholic ceremony, at the end I didn’t feel I had the closure I needed in saying goodbye to GG, so I’m not sure why I thought our oldest son would.
The next day we proceeded with plan Goodbye GG Day. Our oldest son asked if he could bring his camera and we agreed. We gathered the pictures that our son had drawn and the messages he had written and loaded the four of us into the van. The destination was the graveyard where GG’s ashes were buried. We made two stops on our way; one to purchase some flowers and another to pick up some balloons in GG’s favorite colour.
At the graveyard we walked around talking about the headstones and why you shouldn’t step or climb on them. He played in the leaves and took some pictures; finally we walked over to where GG was buried. At GG’s headstone we pointed out that Great Grandpa was buried there a long time ago and now GG was too. We talked about how GG’s body turned into dust and would eventually become part of the earth and help plants to grow. We laid the flowers we brought and our oldest left his pictures and “GoodBi GG” note in a plastic bag with some rocks in it. We walked around some more, and visited with a lady and her Theo Dog (daschund) whose property bordered the graveyard; while our oldest played in the thousands of leaves that had collected at the edge of the fence.
Just before it was time to go we took the balloons we had gotten and attached one of our son’s notes that read, “Sorry GG that you died.” Our son let them go and we said good bye as the balloons floated away. On our way home we had some hot chocolate to warm our insides, as it was a chilly day. On the drive home I asked our son if it was good to say goodbye to GG, “Yes Mom,” he said in his sad voice, and then he proceeded to ask if he could watch a movie when we got home.
Everyone grieves differently and children are no different. Early lessons in death are sometimes the hardest ones for children to grasp, but I feel we did right by GG and our family. When it comes to death, it is easy to take ourselves very seriously, but I am grateful for children who have a wonderful way of lightening even the darkest moments with laughter. Whether it’s questions of zombies, why robots are helping Grandma breath, or them wondering why you can’t see someone at their grave site; their innocence can keep us from getting to caught up in the traditions of saying goodbye while forgetting to actually say goodbye.
So with that I say goodbye and au revoir GG, we love you and are missing you!
In a small capacity, I have recently been humbled by experiencing life as a single parent. Minus the extra income and having to worry about daycare, I have seen what our life without a father and partner would look like. The number one word I would use to sum up this experience is EXHAUSTING. I love my children, but simplest things become a challenge, especially with a newborn; Grocery shopping, mowing the lawn, making supper, bedtime routines, socializing, taking time for oneself, finding constructive ways of dealing with anger all become more complicated and emotionally taxing.
I have so much respect for parents whom are raising their children on their own, for whatever reason. Taking the time to listen to your children is hard when all you feel like doing is locking yourself in the bathroom and crying. I’m sure it gets easier but in cases where parents have limited outside support, the wear and tear to the soul must be immense at times. I love being able to share my parenting joys and frustrations with my partner, and I love hearing his thoughts and feelings on what is happening in our family. In my partners absence, friends and family helped by filling in the gaps in order for me to stay a sane parent.
In my experience, one of the only things that got easier in being a pseudo single parent was the cleaning. It’s no secret that my partner is a clutter bug and in his time away I have found that my housework load decreased substantially. With that said, I would still much rather have his involvement in our family in exchange for a few more messes to clean (I do have my limits though).
To those who are parenting on their own, I pay homage to you! May you find the support you need to breath, the patience you need to listen, the money you need to eat and the time you need to sleep.
P.S. You can wear your baby doing many chores, but draw the line at mowing the lawn.
I have two sons. One I have known for over four years and the other I have only known for six months minus a week. My oldest son was a highly active baby that made himself known all hours of the day and night. He would not fall asleep unless my husband or I rocked him for a good half an hour before bed, and even then he’d wake up ever hour or two. I suffered from intense postpartum, which looking back, was made worse by the overwhelming lack of sleep. Though I wanted more children, we put off having a second for fear of a repeat performance of that first year.
Finally, a month after my thirtieth birthday and over three years after having my first child we went for it; nine months later my youngest son was born. It may sound far fetched, but from in the womb I could tell he was an easy going baby. Unfortunately for him, “easy” has sometimes meant getting lost behind his brother’s larger than life personality. Through no fault of my oldest son, we have sometimes neglected to spend the same “getting to know you time” with our youngest as we did with our first. It’s not that we are ignoring our youngest, I am just aware of the struggle over ensuring that his growing personality does not get overshadowed by his older brother.
Finding the balance in love, time and energy spent is a tough job for most parents, especially when children compete for your time. A good teacher tries to find ways to engage not just the eager to participate but the children who are acutely quiet. As a parent, I want to see both my boys have a platform to express themselves while feeling heard and valued. While my youngest isn’t even talking yet, I am excited to get to know his personality. For now I take comfort in that I am committed to finding a balance for my children as I want them both to have voices in our family.
P.S. If you sit in silence long enough even whisper sounds like yelling.
Labels are sometimes the most detrimental ways we can stunt a child from flourishing. How easy is it when we see a child misbehaving in the mall, to turn to a friend or partner and call those children bad or to look at the parents and criticize the way they parent their children. I have been guilty of this many times until I got to know my oldest son.
My eldest son is four years old and just completed preschool. If I was to paint a picture of my son with words I would say he is a curious, creative, goofy, easily excitable, and loud little boy with a love for all things green, floral, robotic or on wheels. He is a free spirit that loves to move from activity to activity on his own time and takes many moments to pause and observe EVERYTHING. He learns when no one is looking, he climbs to highest peaks that will hold him, with very little fear, and challenges most everything.
On the flip side of this larger than life personality is the challenges that come with parenting him. He is easily frustrated, he has big anger, love, hate, sadness and he has no issue with throwing temper tantrums anywhere. One of the biggest challenges we face is trying to get and keep his attention. Unfortunately it is this challenge that has overwhelmed his preschool teacher this year. We recently sat through a meeting with the resource teacher and his homeroom teacher and listened to her express her frustration for spending so much time on our son all year while 26 other students suffered. The guilt you feel as a parent realizing that your child is indeed beyond your control is immense. We set boundaries for our son, we expect him to listen when we give him instruction, there are always consequences for his actions. But how does a child wear out the use of his name and the class time-out spot without some blame given to the parents? We could try to beat our son into submission, but I fear the cost to his person-hood would be too great.
Fortunately for us as his parents, we hold enough creativity to try to work with our son, unfortunately for his teacher she did not hold the creativity needed to work with him. It breaks my heart that he has been labelled as a bad kid this year, and that he spent three quarters of most days on time outs at school. I am not blind to my son’s challenges, nor do I blame his behaviour on his teacher. The truth is that even with three Educational Assistants in the classroom 27 preschool students is a lot to work with and help flourish. I merely think we all could have done better.
It’s amazing to think that our son who had so much trouble in school still managed to learn all his letters and their sounds, how to read and spell many three and four letter words, count to 20+ and backwards from 10, the words to Oh Canada, how to write his name, to almost colour in the lines, spell all the basic colours, draw pictures that are fairly recognizable, recite countless poems from memory, and how to zip up his coat. For a bad boy he did pretty well this year, and I will not lose sight of his successes because of someone’s judgements. Onward and forward into kindergarten he goes, I will swallow my shame and exchange it for pride.
P.S Never judge a book by it’s cover.
a. account for approximately 3 percent of residential waste in Canada
b. are a never ending expense for the first couple years of a child’s life
I’d like to say we choose to use cloth diapers because they are more environmentally friendly, but really we’re just cheap. I’m sure many of our neighbours who’ve seen our son’s diapers drying on the line believe we are hippies but we know the truth. Diapers are so expensive! Some people think that what you use in water and electricity to launder cloth diapers makes them more wasteful and expensive, in our case this is simply not true. We use our high efficiency washer which uses very little water in comparison to a top loader and we line dry them. Not only does line drying cost nothing, but it naturally bleaches diapers back to their original white!
Cloth diapers are a lot more work as they add a couple extra loads of laundry to your list of things to do. However, there is something therapeutic about hanging your child’s diapers out on the line to dry. If the work doesn’t bother you and you’re committed to using them as often as possible they are worth it! I love looking out my back door and seeing a row of cloth diapers swaying in the wind, for some strange reason it makes me love being a mom even more.
Don’t get me wrong, I will use disposables; for instance I will not camp and use cloth ever again. I will not go on road trips with cloth diapers ever again and most importantly I will not use cloth diapers at night. It is many of these reasons that make me a Non-Hippie Hippie. I choose to put a cap on my commitment to cloth diapering. Never-the-less, our choice still helps the environment and saves a lot of money; that’s a pretty good outcome for a cheaper alternative. So in closing I’d like to say I love money in the bank therefore I love cloth diapering.
P.S. Cloth diapering while camping will increase the maggot population at your camp site.
Anyone who knows me well, will attest to the fact that I’m a bit of a germaphobe. I’m the mom who makes sure her kids don’t touch anything in a public washroom except toilet paper, tap water and paper towel. I wipe down handles, light switches, railings and toys more than often. I switch my dish rags and hand towels regularly. I do not like paying for food with coin or touching the buttons of an interac machine and then eating without washing my hands. If one of us is sick my already vigilant hand washing regiment kicks into overdrive with continual reminders to cough or sneeze into your elbow.
However, despite all of my precautions, our family still gets sick; colds, flu’s, pink eye- you name it we get it. So why is my family so susceptible to illness. Well, despite the fact that we have wonderful cases of immune deficiencies such as asthma, allergies and anaphylaxis in our family, we are also a highly social family. School, neighbours and friends fill up so much of our time that we are bound to cross paths with some unwanted bugs along the way.
Right now I’m experiencing increased neuroticism towards contracting viruses as we have a fairly new baby in our household. We’ve already gone through two flu’s, one cold, and a single case of pneumonia since his introduction to the world, but we’ve survived. As much as I hate my family being sick, I know that many times it the price we pay for community. I can take my precautions, but I can’t stop our family from building relationships and interacting with those around us.
My hands may be raw from hand washing, but I refuse to let go of our community for the sake of reduced illnesses.
Everything has it’s price, lol.
P.S. Don’t forget to sneeze into your elbow.