Received the beautiful mama blog award

I am completely honoured that Jenny from The Jenny Evolution and The Sensory Spectrum nominated me for the beautiful mama blog award – thank you!

I initially started this blog last year because I wanted a place to share my bumpy road of learning to sew.  It also gave me an excuse to take a break from my challenging but adored role as Maddy’s mom.

It was not long after I started writing that I poured my heart and soul out to the readers of sewrite. That was a turning point for me, and I realized how much writing about the darkest moments of my parenting journey, sharing my most exciting and brightest moments, and documenting ‘things that worked in our house’ was a way for me to cope better with our situation. I love how my blog has also connected me with so many compassionate, loving, wonderful parents who have ‘been there’ and can shine the light forward for us.

I’m fumbling my way through this whole parenting thing, but I love where we are headed. In an email exchange with a friend today, talking about experiences with our kiddos, she commented that I am “very determined”. I responded back to her, tongue in cheek, that “I’m not sure the correct descriptor of my parenting style is very determined as much as it is stubborn to the point of [self] destruction.” This blog certainly helps me take a step back, and not let my stubbornness for working towards a specific goal with Madeleine take over who I am as a person – not just a mother – but a person who also needs to be taken care of.

As part of the beautiful mama blog award, I’m asked to tell you three things I love about being a mom. This is a really tough question, but I’ll do my best to say something worthwhile.

1. I love seeing the world through Madeleine’s eyes. I love getting excited about bubbles, trains, and music.
2. I love how much Madeleine is teaching me. I love that she pushes me past my comfort zone, and forces me to learn skills that I would otherwise gloss over. Some of the things she’s teaching me are: more patience, the comfort of routine, and speaking up for myself (and her too). The more I learn about Madeleine, the more I learn about myself.
3. Every day Madeleine is the best reminder of what is important in my life, where my priorities lie, and who I want to be – I am so thankful for that.

There are so many beautiful mamas out there it’s hard to pick… but here are a handful of them in no particular order:

Lindsay @ Food for Thought

Lee-Ann @ Lee-Ann’s Crazy Life!

Brandi @ yee wittle things

Shannon @ HighFunctioningMomism

• Save the award image and include it in your acceptance post
• List three things you love about motherhood
• Nominate other deserving mamas – as many as you’d like!

 

The day we’ve been waiting for: Diagnosis day

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.

 

Boundin’

What do I want for Maddy? I want her to be boundin’!

Bean there, chewed that

We had a breakthrough tonight! It was SO exciting!

We have been working on some strategies to address Maddy’s oral motor struggles. We were warned that it takes a lot of work for slow progress, and they weren’t exaggerating. But, that means when the breakthrough happens it’s time to jump up and down cheering – and really, who doesn’t like cheering?

One of the strategies is – get ready for it – chewing with our mouths wide open. We tend to only practice this strategy at home alone. We show Maddy how we move the food with our tongue onto our back teeth. We use our words to talk about putting the food on our back teeth. Then we do big, exaggerated chewing.

Although we’ve been doing this for a long time, Maddy has really struggled with being able to move the food to her back teeth, especially small foods that move with little effort. Tonight, we had black beans as part of our dinner. Maddy kept putting a bean in her mouth, and when she would imitate our chewing, we could see that the bean was actually sitting under her tongue (though, she was having fun doing the big, exaggerated chews, imitating my sound effects and using her whole head to nod).

After we practice chewed for a few minutes, Maddy let Eric put his finger in her mouth to hold the bean on her back teeth. But, every time her teeth felt resistance, she would stop the biting motion.

We decided to take it to the next level. We excitedly had her watch the bean get all mushed when we would chew. The first time she watched, she gasped excitedly – the bean looked different! The next time Eric held the bean in place for her, she went for it. Maddy gave the bean a huge chomp! Fortunately, she didn’t give Eric’s finger a huge chomp Maddy immediately spit out the bean to examine it in full detail. She was a bit scared by it, but baby steps, er, toddler steps.

Maddy chewed a bean! Huzzah!!!

 

The Misunderstood Child

A poem about children with hidden disabilities by Kathy Winters.

I am the child who looks healthy and fine. I was born with ten fingers and toes. But, something is different, somewhere in my mind, and what it is, nobody knows.

I am the child that struggles in school, though they say that I’m perfectly smart. They tell me I’m lazy — can learn if I try — but I don’t seem to know where to start.

I am the child that won’t wear the clothes, which hurt me or bother my feet. I dread sudden noises, can’t handle most smells, and tastes — there are few foods I’ll eat.

I am the child that can’t catch the ball, and runs with an awkward gait. I am the one chosen last on the team, and I cringe as I stand there and wait.

I am the child with whom no one will play — the one who gets bullied and teased. I try to fit in and I want to be liked, but nothing I do seems to please.

I am the child that tantrums and freaks over things that seem petty and trite. You’ll never know how I panic inside, when I’m lost in my anger and fright.

I am the child that fidgets and squirms, though I’m told to sit still and be good. Do you think that I choose to be out of control? Don’t you know that I would if I could?

I am the child with the broken heart, though I act like I don’t really care. Perhaps there’s a reason God made me this way — some message he sent me to share.

For I am the child who needs to be loved, and accepted and valued too. I am the child that is misunderstood. I am different — but look just like you.

 

 

 

Take two

Oh, hey, remember the time this happened? It happened again. Except this time I didn’t need to flag a stranger even though my phone was dead (ya, that’s a bad habit of mine). I knew that when Eric got home if we weren’t there he would know why and where we were instantly… and he did.

This time I’m home with the left side of my head aching from a hair pulling/ear pinching incident that showed Madeleine to have super human strength. Who knew all those years of getting nonviolent crisis intervention training (for working in group homes) would come in handy parenting my strong-willed toddler. I’m happy to say I immediately remembered how to respond to hair pulling/pinching, by pressing into the body. I was not prepared for the willpower Madeleine would have – holding on for at least a minute, maybe two.

I’d be remiss if I didn’t mention that, more importantly, today is Eric’s 30th birthday.

Eric’s 26th birthday

I think we’ll do a re-take of the big 3-0 on the weekend.

 

 

The 15 minute rule

Awhile back I mentioned that we were starting the SOS feeding program through our local public services. Unfortunately, they didn’t have enough children signed up to run the program, and the starting date was bumped… to today. We had our first session today, er, Eric did. Maddy is in the throes of strep throat so I stayed home with her.

It was great to get the first parent teaching session. We were disappointed to hear that there are still not enough children signed up for the group feeding sessions. They require at least four kids (but hope for more), as part of the success of the program is based on the environment – peer pressure, for lack of a better description. We will find out in the next week or so if they have enough, and if not, we will try again for this fall.

We did get a lot of good tips today that we are slowly going to put in place at home. The biggest struggle we know we’ll have with this is the planning required. Eric and I are fly by the seat of your pants kinda people, particularly when it comes to meals. We never plan meals in advance, and we don’t really have a regular menu rotation. We like trying new things, and Eric is especially good at preparing meals without a recipe. That is going to have to change, but I will share more on that another day.

We’ve already taken the first step of the program – I talk about it in this post.

One of the next things we are implementing is the 15 minute rule. Basically, that means that challenging meal times will never last more than 15 minutes. It’s up to us to decide whether or not the meal is challenging – and it’s based on the cues Maddy gives. If she is calm, and happily eating, it’s okay if the meal lasts longer than 15 minutes. On the other hand, if she’s agitated, upset, frustrated, or anxious, 15 minutes and we call it quits.

What’s the theory behind this rule? Basically, if a meal time is challenging and lasts longer than 15 minutes, the child will end up with negative calories. In other words, the child will burn more calories than they will consume. If there is always a preferred food item presented, 15 minutes is enough time for that item to be eaten. For Maddy, we know her preferred food items are pasta, oatmeal, waffles, risotto, and rice. These are also things she is able to comfortably eat with her oral motor challenges.

The 15 minute rule will be a big change for our house, but we’re ready for the challenge!