Tag Archives: toddler

Throw a life preserver!

Standard

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.

 

Advertisements

It’s buggin’ my ears

Standard

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

Standard

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.

progress

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

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 😉

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.