Category Archives: Maddy’s Journey

remember

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Every November Canadians remember. Each year I lovingly pull out a photo of my Grandfather, and pause to reflect on what he and so many others sacrificed for our freedom. Last year, in the chaos of losing my mom and uncle, the day slipped past me. This year, though the loss is still fresh, the chaos has subsided, and I find myself in a place of remembrance once again.

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This is the first year that Madeleine has begun to understand the meaning of November 11. Her kindergarten classroom had a veteran join them yesterday. I was really curious to follow-up with Maddy, to see what the veteran had shared, what she had absorbed, to answer any questions she had lingering. It took me by surprise when I asked Maddy, to find that she was so upset about Remembrance Day, that she couldn’t really talk about it. She started shouting at me, and ended with, “You know that they’re not alive anymore!”

My heart felt so heavy for her, that at four years of age, the reality of death was so real for her.

I spent some time reflecting on what death means for Maddy. How will experiencing a sudden death change her? At four, Maddy knows that death leads to chaos, sadness, anger, anxiety…. I could go on. How will that shape her? Perhaps this experience will increase her empathy towards others, make her more forgiving and accepting of others. Perhaps she will cherish the love and time that so many friends and family share with her in a different way than other young kids. How will this loss change her understanding of Remembrance Day?

It hadn’t crossed my mind that the realness of death that is already part of her world would help her to be deeply grateful to those Canadians who willingly gave up so much, so that we could enjoy the freedoms we have today. Yes, at this age, it is hard for her to wrap her head around, and presents itself as anger and confusion. But as she matures, and is able to process those feelings, I think that her understanding will be deep. She will hear stories of her Great Grandfather, and understand his sacrifice, the sacrifice of so many, and their families. She will know the importance, deep in her soul.

We Remember.

Peaks and valleys

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I’ve been having a rough go emotionally the last little while. I’ve sat down a few times to blog, but couldn’t get the words quite right. The last couple of months have thrown us some twists.  A family vacation that was more difficult than we imagined, despite our endless preparations for it. Repercussions from our family vacation. Follow-up visits with some of our lovely doctors/therapists. Appointments that included information that we weren’t prepared to hear quite yet, and that have left me in a state of confusion and with a feeling of helplessness. A pregnancy that keeps moving forward towards the arrival of a beloved babe, but that sometimes feels like another test to add to our family load. These challenges followed a very lovely and emotionally positive and strong winter – it feels like the a temporary valley. A valley that has its own beauty, even though I’m actively working on climbing out of it.

There are many lovely, amazing things happening right now too – which are acting as an equalizer to this funk. My work hours have reduced to 24 hours a week. Even though I adore my job, I feel like I can breathe and I’m finding balance after a hectic work winter. We are enjoying the summer, spending most of it outdoors, as that is Maddy’s favourite place to be. I am finding strength in my closest friends, in my community, and at home. I have a lovely new haircut thanks to a very talented, long-time friend. Nothing like a new haircut to make you feel like you can take on the world 🙂

The hardest feeling that I’m battling is hurt. As I’m sure any parent reading this will understand, I hurt so deeply when things are hard for Maddy and I can’t fix them. I hurt so deeply when I run out of patience and am not the mom I want to be, especially when I know that the situation that I have lost my patience in is beyond mine, Eric or Maddy’s control. I hurt so deeply, when I’m on the edge of coping, and I have to leave Maddy in a time when she wants me. I worry that she sees it as a punishment for something that isn’t really her fault. I worry that she might use those times to assess her worth or value in this world. I always try to explain when we’re both in a place to talk, but I don’t know if my words are enough.

Parenting is amazing, exhilarating, and incredible, but it sure has tested me more than I expected. Some days it feels like one foot in front of the other is a success to celebrate. Other days I sit and look over the past 3 years and can’t believe what we have accomplished as a family. Every day I love Maddy for exactly who she is, a sometimes over-the-top silly, clever, very inquisitive, strong-willed, determined, active, beautiful little girl. But, there are some days that I wish more than anything that the road was not so hard for her, or us.

 

It’s buggin’ my ears

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M: “Mommy, what is that?”

A: “What is what, honey?”

M: “It’s in my ears. What’s the noise?”

A: [Hears dead silence…] “Um, do you hear a noise?”

M: “Yes, turn it off. It’s buggin’ my ears.”

A: “It’s bugging your ears?”

M: “It’s in my ears. What is it?”

A: “I don’t know, bug, I don’t hear anything. I believe that you hear something though. If it’s hurting you, we could get your headphones. Do you want your headphones?”

M: “Yes. I need my headphones.” [Sits happily with headphones for 10 minutes]

People who have a sensory processing disorder do not process their sensory information, like auditory input, the same way people without a sensory processing disorder do. Sounds that don’t hurt us, can hurt them. It is not someone being sensitive, demanding or manipulative. It is someone trying to manage a difficult situation.

 

Sensitive Santa

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A year ago we attempted to visit Santa twice. It was an awful experience, not just for Maddy, but for us as well. It was too much… too much everything. Our first visit ended with a Santa who was quite unhappy with us, and a comment from a stranger who felt that our struggles were because, “That little girl is just begging for some love and that mother is denying it.” This woman at least had the respect to not say this in front of me, unfortunately, she didn’t know she was standing next to Eric.

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I’ll spare you the details of the actual day, but we ended up with a photo of a screaming, terrified Maddy with a grouchy Santa. As a parent, it was a totally shameful experience that left me questioning my behaviour. Why was it that I wanted Maddy to see Santa so badly? Did I really not know it was going to be so difficult, or did I force us to go because it was something that I wanted and I didn’t care what Maddy needed?

I still look at the photo from that day with mixed emotions. On the one hand, what’s a Christmas album without the classic baby/toddler crying with Santa? On the other hand, I know that Maddy’s crying was much beyond the typical crying photo, and was related to a host of factors that don’t impact most kids.

I wanted Maddy to have the same experiences that other kids would have – but, the thing is, I wanted her to have the experience that I imagined, not the actual one we had. The Christmas tradition of visiting Santa is not really a magical experience if it is an anxiety-provoking, traumatizing event with a very grouchy Santa.

We were so fortunate this year to snag a spot with Sensitive Santa. The Kitchener CTV News talks about the event here. It was an overwhelmingly positive day. I can sum it up by saying that they do their very best to reduce sensory input (dimmed lights, no music, Santa doesn’t ring bells, etc.), they mail a social story in advance (Maddy requested we read it at least 15 times before our visit this morning – it helps manage anxiety and provides expectations of what will happen), there are no waiting times, an area with blocks and colouring for the kids to enjoy, and perhaps most importantly – the staff and Santa are skilled and patient.

It is an entirely child-led visit, allowing the child to interact with Santa in their own way. When Maddy was hesitant at first, they encouraged her to explore, she walked around touching all of props. They then introduced her to a stuffed Mickey Mouse, and asked her to help Mickey explore. When Maddy wanted to leave the space, they let her take Mickey and we walked around and watched another child visit with Santa. When Maddy wanted to try again, they patiently waited until she was ready to get close to Santa. Maddy explored her gift and looked up for a picture. Santa watched her cues very closely, and spoke to her in a way that wasn’t overwhelming – pausing to allow her time to process, and prompting when necessary. We had filled out an information card in advance, so Santa knew exactly what to talk to Maddy about! We finished our visit with a high-five, and Maddy said thank you and Merry Christmas to Santa.

What struck me most, was that every child’s visit with Santa was completely different. Instead of every child being forced to fit into a prescription visit, the visit moulds around the needs of each child. We give Sensitive Santa a big thumbs up and encourage anyone who thinks that it is an event that their child can benefit from to give it a try.

Letter to my daughter

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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

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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.

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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

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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.