Tag Archives: Family

I’m an okay mom

Standard

I’m an okay mom. Sometimes I’m a great mom, sometimes I’m a lousy mom… so I guess that averages out to being an okay mom. But, you know what? I’m okay with that.

I’m not perfect. I’ve never claimed to be perfect, and I try to embrace my imperfection. I try to live in my vulnerability, so that I can be my genuine self. Imperfections are what make us human. They’re what make us unique. But, it’s a funny thing, once you become a parent, suddenly being imperfect doesn’t feel like it’s good enough anymore.

When I’m at work, if I make a mistake, I own up to it and apologize. If I forget to invite someone to a meeting or event, if I slip past a due date, if I am less than prepared for something than I should be… I say so and apologize. I will apologize to someone in a large meeting, if it is something that deserves that acknowledgement. I apologize, learn, and try to do better. I feel totally comfortable letting people know that it was my mistake, that it was unintentional, and that I am sorry.

When it comes to being a mother, I find it much harder to take that same breezy approach. The consequences just seem so much bigger when the mistake is with a little person who is absorbing what’s around them all day long. Those huge consequences feel overwhelming, and that feeling makes it hard to brush off parenting mistakes.

And, the thing is, raising kids, really brings out our imperfections. Even though they are awe-inspiring and beautiful, raising kids is damn hard. They test every one of our flaws. Sometimes, that testing means that we mess up. We mess up over, and over, and over. I mess up so much, but I think that’s okay, cause it makes me an okay mother.

When we have challenging moments, I sometimes look at Maddy and think to myself, “Yes, you are having a difficult time. Truly, this is something that is HARD for you. This is self-preservation, this is not bad behaviour.” I then remind myself that my reaction to the situation has nothing to do with Maddy and everything to do with my own shit.

This line of thinking has taken me to a great place where I can honestly not care that we don’t brush Maddy’s teeth (or wear winter coats, or wear shoes… you get the point). Teeth brushing is hard for Maddy. But, us wanting to force her to brush her teeth? Well, that’s just control issues. Maddy’s refusal to brush her teeth, that’s self-preservation. Choosing to not force it on her – that’s us dealing with our shit and understanding that this is not about us, it’s about her.

One of the things I’ve really been thinking a lot about is how as Maddy gets older, our number one priority is that she can advocate for herself. She can demand accommodations if she needs them. If she doesn’t learn that skill, life is going to be more complicated than it needs to be. But, in order for her to be able to advocate, she has to understand what her strengths and weaknesses are, whether or not they are related to ASD. On top of that, she will have to be comfortable shouting from the rooftops that she’s not perfect.

As a parent, I look at Maddy and believe deep in my soul that her weaknesses are not shameful. They are beautiful. They are unique. Having weaknesses makes her more like her peers than any of her strengths might. So, first and foremost, Maddy must learn that her weaknesses are not shameful, so that she can embrace them and advocate.

In thinking about how we can send Maddy that message, other than providing her with the unconditional love and support that every child deserves, I had an a-ha moment. Of course, Maddy will learn that her weaknesses are not shameful, if we are able to show her that we can embrace our weaknesses and still love ourselves. We are all worthy, weaknesses and all. I don’t know what you’re all thinking, but I think this just might be the best damn thing we can teach our kids!

We have the perfect opportunity, day in and day out, as we mess up as parents. We can acknowledge that we’re not perfect, apologize when needed, and still love ourselves as the imperfect parents we were destined to be. We can forgive ourselves, as many times as we need to. We can let go of the emotional baggage that keeps us questioning our parenting. What a great gift we can give our kids by showing them how we respond to the unexpected, how we manage our weaknesses, how we take responsibility for our behaviour whether intentional or not, and how we forgive and love our imperfect selves.

I’m a mom who doesn’t brush her kid’s teeth. I’m a mom who loses patience, even when her child is in an anxious and vulnerable place. I’m a mom who lets her kid go outside in the coldest of cold weather underdressed. I’m a mom who says no when I shouldn’t. I’m a mom who gives up and takes the easy way when I have nothing left to give.

I’m an okay mom. Okay, there… I said it.

 

 

 

 

Advertisements

Letter to my daughter

Standard

To my sweet Madeleine,

You make me so proud. You are a fighter. You are working so hard with us every day and you are learning so much. There are too many things that I am so proud of to list, but here are a few:
  • The other day you said to me, “Having bath is so brave.” You know what? You’re right. You are so very brave, not just during bath time, but every single day.
  • After practising for months, you said to me, unprompted, when I touched your cheek, “I don’t like that, mommy.” A small breakthrough that I know was hard for you. I know you will keep fighting every day to use your words when they are difficult to find. I want you to know that we hear you.
  • You asked for and ate half a cucumber from my salad. Wow! You also asked for some “yellow” (aka curry) on your rice the other night. You didn’t eat it, but it was in your bowl, in your space, and you touched it with your tongue, twice. You are exploring food, even when it is hard for you. We are amazed every day by your determination.
  • You have asked to use the potty three times now, and all three times you were successful. You now sing “Hooray, hooray, hooray for Maddy!” (you can thank your Auntie Lindsay for that one). We are following your lead, because you know you best. You are teaching us so much.
  • I asked you the other day if you knew how much I loved you, and you responded, “too much.” I couldn’t stop laughing. You are a funny little girl. We are so impressed with your ability to rebound even after the most difficult times, to show us your happy smile, and make us laugh with your words.
I hope that as you grow, you keep this spirit. As one of my favourite bloggers, Glennon, from Momastery says, “We can do hard things.” We can do them together.

Glowing fishing

Standard

We went fishing! Okay, okay, not real fishing… but it was real to Maddy. Bath time is a huge battle ground in our house. Not just a I-don’t-really-like-baths kind of thing, an epic, anxiety producing, meltdown causing, battle ground.

It causes enough anxiety, that sometimes the first thing Maddy says when she wakes up is “No bath,” even though it’s 12 hours (or more) from her bath time. She randomly talks about not having a bath during the day, sometimes perseverating on it for a half hour or so. It’s gotten to the point that Maddy is now afraid of Eric and I showering – and randomly says, “No mommy shower. No daddy shower.” She regularly cries now when one of us showers.

We know it’s anxiety. We’re working with our behavioural team, and a mental health counsellor who specializes in little ones to work through it. But, man, it’s tough. It’s tough seeing how anxiety provoking certain (and seemingly simple) things can be. Wide-eyed, terrified looks, panicked vocalizations, and an increased heart rate, that can ultimately lead to a completely rigid body and meltdown. Heartbreaking.

Hair washing seems to be one of the big causes of these issues. As a result, we really only wash Maddy’s hair once a week (unless we really need to because of a syrup incident, or something similar). We’ve tried putting a wash cloth on her back so her wet hair doesn’t touch her back…. not successful. We’ve worked really hard on looking up while we rinse her hair (a picture on the shower ceiling is quite useful)… not successful. We are really at a loss at what we can do to make the actual experience better.

So… if we can’t make hair washing feel better… why not make the bath tub more fun? It can’t hurt! A week or so ago we picked up a bag full of goodies to make bath time fun and special. Some of the things we got are oversized glasses that Eric and I will only wear during bath time. We bought special balls, balloons, bubbles, and fun purple goggles to see if Maddy likes them on. I’ve already started a new list of things to get: a baby we can wash in the tub together, and crayons she can colour on the walls with.

This week, we started with a magnetic fishing set, and glow sticks. The first night we started with the fishing set only. After we fished for a while, Maddy suggested that we wash the fish with soap. She soon realized it would be much easier to do if she got in the tub. She insisted she wanted to stand, but again, realized on her own if she sat down it would be easiest. Eventually it turned into a game of, “Can you wash your feet? Can you wash your elbow?” Maddy even asked me to wash her back for her! It was a huge success… until we washed her hair. I was tempted to skip it, but we had just come back from a weekend of camping, and it had been awhile. Mama fail.

Given the mama fail above, Maddy was no longer interested in fishing. I amped it up. I added glow sticks to the water and turned off the lights. I promised Maddy that there was no bath tonight, just playing, and she tentatively joined in.

photo (1)

By the end of our fishing experience, I was sitting on the edge with my feet in, and Maddy was standing in the water. This time I didn’t ruin the experience with a hair washing.


Honestly, I’m not sure who will have the most fun during Maddy’s bath time now 😉

Little gal, big personality

Standard

We recently switched Maddy’s ABA therapy from centre-based to home-based. Hands down, it’s the best decision we’ve made. It is like heaven being in the house while Maddy’s in the loft with one of her two therapists. We can actually clean. Or cook. Or read. Or catch up on missed work. Or a number of other activities that can only be done when Maddy is not around. We get 4.5 hours of that time each week now. It’s my favourite part of the week.

Maddy loves when her “special friends” come and play. She asks about them all week, and knows that when they come over, their attention is focused on her. They always arrive with a bag full of goodies, and Maddy loves seeing what’s new.

The other thing I love about home-based therapy, is that our relationship with our therapists is different. They come into our house (often when it’s super messy), they know more about our personal life, and we have moments where we chat. I can understand the families that have told us that the therapists become a part of the family.

Today after 1.5 hours of blissful dinner making, kitchen cleaning, and couch sitting, Maddy and her therapist “Cole” as Maddy lovingly refers to her came downstairs. Nicole gave me some interesting insights into Maddy.

First, she told us that she spends half of her session negotiating with Maddy (first do not preferred activity, then we can do preferred activity). This is something she sees a lot with the 10 year olds she works with, but not often in kids Maddy’s age. I quote, “Maddy has a really strong personality. She has the personality of a 10-year-old.”

I couldn’t restrain my laughter. Other evidence that Maddy is 2 going on 12:

  • She regularly tells Eric and I to either “leave” or “go away” (my personal favourite was the time she kicked me out of the car and told Eric, “No pick mommy up” after I fake left)
  • The words, “No like mommy” have been heard in our house more than once

Nicole also told us that Maddy is a rule kid. She has noticed that once Maddy hears a rule, she never forgets it. Apparently all through therapy she repeats, “No Loki eat it,” “No Loki on couch,” etc. I think Nicole might have left out some of the cringe-worthy rules 😉

This was a huge eye opener for us, because we were thinking of these as demands. But, Nicole is seeing them as Maddy repeating something she views as a rule. It makes a lot of sense why she can become so upset if she thinks it’s a rule that’s not being followed. It also goes along with the daycare report that Maddy is the only child who remembers exactly where everything goes in the room. During clean-up time, Maddy spends as much time cleaning up as she does moving the things the other kids put away in the “wrong” place. They’ve told me on more than one occasion that Maddy is really good at and really enjoys cleaning.

Nicole had a few other insights that will help us as we move forward with goal setting. Our decision to move to home-based therapy is already paying off.

We Moved for Maddy!

Standard

On June 2, we walked in the Walk Now for Autism Speaks event. We walked with 14 other family members, and raised $2280. Thank you to everyone who walked with us, those who were with us in spirit, and those who donated.

fam

June 2 was a really special day for us. We felt surrounded by strength. I’m sure any parent understands this, but when someone shows love and care for Maddy, I feel loved and cared for. It was a day where we could let go, and just be.

mama

It conveniently came just a month and a half after Maddy’s diagnosis, and was the perfect way for our family to “begin” our journey. It’s a day I will not soon forget. I will hold the memories in my back pocket to use when we’re in some of our tougher moments. I will remember the kids wearing their oversized t-shirts, I will remember Chloé walking the entire way – in the rain, I will remember the crowds of families who understand, and I will remember our friends and family who showed up for us.

Thank you for taking this journey with us. We could not do it alone.

gals

A whole new world

Standard

Since Maddy’s diagnosis we’ve been all kinds of busy over here making appointments, faxing reports, and doing intakes. A whole new world of opportunities has opened up with those three little words: autism spectrum disorder.

IMG_2180We had a multi-disciplinary meeting yesterday at Maddy’s daycare – an hour for everyone to come together and get on the same page. It was an overwhelmingly positive experience. We are so blessed to have an amazing support team behind us, who are cheering Maddy on every step of the way.

I was so humbled to hear Maddy’s daycare very openly and honestly tell us that they were confused, and just didn’t see it – without pushing any sort of agenda. All they wanted was to understand. It didn’t take long before they did. Our support team was able to explain in a much more articulate manner than I would have been able to. At the end of the meeting they told me, they understood, and their new understanding allowed them to see it.

I picked Maddy up today at my usual time. When I arrived, one of Maddy’s teachers started by sharing with me some of Maddy’s sensory quirks she had not really noticed before. Our meeting had given her a new lens and she was picking up on cues she had previously missed.

She went on to tell me that at one point in the day, Maddy was starting to become agitated (or, for those of you who are familiar with the phrase, her engine was running too fast). There were extra people around, creating a lot of noise and chaos in the room. Maddy’s teacher decided to try something we had talked about yesterday – deep pressure. She asked Madeleine if she’d like some squeezes (this is what we call them at home). Maddy said yes and proceeded to show her teacher all the places on her body she wanted squeezes (I know – amazing!). With tears in her eyes, the teacher said to me,

“For the first time, Maddy looked at me like I finally understood her.”

My heart just about burst into a million little happy pieces. We might be taking baby steps, but we are moving leaps and bounds.

The day we’ve been waiting for: Diagnosis day

Standard

It’s been awhile since I’ve sat down to write. I’ve been spending a lot of time processing information. I’ve been processing since April 26.

April 26, 2013, the day the words Autism Spectrum Disorder officially entered our world.

I returned to my desk at work late afternoon after a whirlwind of meetings and a team lunch to find an email sitting in my inbox from the clinical psychologist (Dr. K) we had visited a week earlier. I opened it expecting a question or clarification from Dr. K. It wasn’t a question. It was an email indicating that Madeleine had a provisional diagnosis of Autism Spectrum Disorder.

I’m still not quite sure what it felt like to finally see those words. In all honesty, I didn’t feel much except a surge of adrenaline that had my hands shaking. I was not surprised, but I also wasn’t expecting it. My supervisor let me leave work a half hour early, because I couldn’t concentrate, and really, just wanted to be near Eric. I’m not sure why, but the words she said to me just burned into my brain, “Go home, be with Eric, and enjoy your weekend.” I don’t think I’m ever going to forget those words.

My commute was just long enough to allow myself a good cry. I wasn’t crying because I was sad. I wasn’t crying because we had a diagnosis. I’m not really sure what the exact feeling that was attached to my tears, except I knew that it was my body releasing all of the frustration of the previous 22 months. I felt like a huge weight had been lifted from my shoulders. In a sense, I felt a new kind of freedom. Someone had heard us.

I’ve read a lot of blog posts about others’ experiences or thoughts on “diagnosis day”. Some really great reads I’ve found are here, here, and the one I connected with the most is here. My experience is not quite like anything I’ve found online so far, which I guess is to be expected. Each family has a different journey, including diagnosis day. What I did find in each story was a hidden gem that I connected with, and that allowed me to feel connected to parents I have never met.

I think that our process began when we first saw the words “Suspected Autism Spectrum Disorder” and we’ve felt any emotion you could name since then. What I find the most interesting, is that we left our assessment process feeling more positive than we had felt in a long time. Five days later when I read Dr. K’s email, I felt more at peace than I had in over a year. We have a name to describe our experience, and, although the label doesn’t change much in terms of who Maddy is, it does give us access to a world of information that applies to Maddy. We will be better able to fill Maddy’s toolbox with the most appropriate tools, and she will thrive.

Our therapists often very correctly tell us that it’s not the label that’s important – and I agree with them. You don’t need a label to identify and work with strengths and weaknesses. But, I gotta tell you, as a parent, that label sure brought me a sense of inner calmness that I can’t eloquently describe to you.

I do have some feelings about the diagnosis that don’t exactly pertain to the diagnosis itself:

  • I don’t particularly like that this diagnosis has tied us to a longer term investment in inconvenient therapy sessions, daycare/school meetings, and extra life challenges as Maddy is growing and learning.
  • I am angry at how the public system treats families, and frustrated more than ever by our two-tier system that prevents many families from receiving the support they desperately need.
  • I’m not particularly fond that we’re now part of a world that is full of conflict (philosophical, theoretical, and diagnostic…). We’ve already been exposed to some of the politicized aspects of autism already, and it’s not exactly a walk in the park.
  • I’m not happy that Maddy will have to live in a world where some people do not accept, or even tolerate, differences. The differences that make the world the interesting place that it is.
  • I’m really not thrilled that I have to be more assertive than I’m comfortable by nature, but I am willing to concede that this might be a good thing.

You know what’s not on that list? Anything about Maddy being on the autism spectrum. All of those things I listed could be changed without changing who Maddy is. The public system could be much better at working with families, people could be kinder to one another and acknowledge that different opinions about issues related to autism are okay – we don’t need to fight to be right, the world could become more accepting (not just of people with autism, but of everyone), and, well, I could learn to be more assertive.

If all of those things were to happen, my life would feel a lot less stressful without changing the daily challenges that our family might be working through, or changing who Madeleine is.

We’ve decided to make the Walk Now for Autism Speaks event a family day to mark this important step in our journey. I know that Autism Speaks is one of those hot button issues in the autism community, but we’ve decided to stand with them on June 2. If autism is a cause close to your heart, or you have a few extra dollars looking for a donation home, you can find our team here: Movin’ for Maddy!

Diagnosis day has been a great reminder to us of how lucky we are to have friends and family who are accepting of all kinds of differences in people.  Maddy couldn’t ask for better (great) grandparents, (great) aunts & uncles, cousins, second cousins, or family friends to support her with the love and respect that she deserves. We know that everyone will be waiting patiently with us to see the amazing things that Maddy will do.