Tag Archives: autism spectrum disorder

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.

 

Throw a life preserver!

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I am so fortunate to adore my job, and the people I work with. I have found a spot where I feel that I can contribute to my community in a positive way. I have found people who are passionate about the same things that I’m passionate about. I interact daily with people who constantly challenge my beliefs, and my assumptions about the world. I am learning every day. To top it off, I am given freedom and flexibility. I really couldn’t ask for much more.

One of the best parts about my job is how I am constantly getting the opportunity  to engage with a diverse group of amazing people. I had a work meeting in Coffee Culture this afternoon with an incredible woman. After the important work things had been accomplished, we had a little extra time to chat about non-work related things.

This woman is spiritual, energetic, passionate, quirky, and very funny. Her energy radiates, and creates waves in the room. She is a joy to be around.

We are very different, but also alike. We have one striking similarity – we both have bleeding hearts (INFP right here, folks). We talked about some of the strengths our sensitivity brings to our life, and also some of its challenges.

We talked about how we often feel as though we’re perceived by others as too soft, too feely, too emotional, too sensitive. But, we connect deeply with those who don’t see us as ‘too’ anything (insert amazing hubby and my dearest girlfriends here). They seem to understand the seemingly irrational side I sometimes have when I can’t quite articulate what I can feel in my soul. 

life-preserverWe talked about the overwhelming emotions we feel when someone close to us is hurting, and how that can impede our ability to hold space for that person. She shared a great metaphor with me about this very situation. She said, “When someone else is hurting, we need to throw them a life preserver instead of jumping on the sinking ship with them.” In other words, we need to hold space for that person so that they can work through their own emotions. We don’t need to talk, or intervene, and we do need to let it be about them and not us.

It all comes full circle, because I shared with her one of the things I’ve learned as Madeleine’s mother. When Maddy is in distress, and unable to calm herself down I used to panic, fear that I was a terrible mother for not being able to help her calm down, and try to intervene. That was my instinct and my gut reaction, but it couldn’t have been more wrong. When I did that, I was making something about me that wasn’t about me. I wasn’t holding space for Maddy.

What I’ve learned, is that when we are in a situation like that, it’s best for me to not say anything at all, not to intervene, and to just be present. If I do say something, it’s likely one of three things, “You are very safe. Mommy is right here,” “I love you when you’re happy, sad and angry,” or “Let me know when you need me to help you calm down.” It’s my way of throwing a life preserver, instead of jumping on the sinking ship.

Now, I’m not perfect, and like all of us I do sometimes make things about me, and react in a way that’s not most effective, but now I am able to reflect back on those times and try to explore what triggered my emotions. I’m much less likely to cry with Madeleine these days, and unless Eric is on deck with Madeleine, I never bury my head under the covers any more. I have learned the skill of holding space.

I see the life preserver metaphor as applying not just to adult relationships, but also those with our children. Our need to want to fix something is about us, and we shouldn’t be putting those needs on someone who is already hurting, or having a hard time. Instead, if we hold space for the person, and we allow their fire to run its course. In the end, we’re all better off.

 

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.

 

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.

We Moved for Maddy!

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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.

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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.

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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.

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