Monthly Archives: December 2012

Sensory holiday survival kit

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We’re in the midst of preparing for a few days away to celebrate Christmas with our family. As I mentioned before, I’m feeling a bit anxious about the holidays as change in routine is hard on Maddy (cry-until-I-puke-several-times-a-day kind of hard sometimes). Transitions are very tough for her. We’re learning how to support Maddy through transitions, but mama and dada still have a lot to learn, so we’re not quite there yet.

I decided to prepare a sensory holiday survival kit to try to help us through the next week.

Sensory survival kit

Maddy’s survival kit has:

Mama’s survival kit:

mama's survival kit

  • Chocolate
  • Booze

Do you have anything you always pack in your holiday survival kit?

Wishing you all the happiest of holidays! See you in 2013!!

Enough

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It doesn’t get easier, but it gets better.

That’s what many people who are further along their journey of raising a child with special needs have said to me. I often receive emails and messages from people who I have never met, sharing their stories, and giving us encouragement. I love getting these messages, and it is one of the reasons I continue to share our story.

I was recently reading the Ten Blog Posts Every New Mom Should Read. Many I had already come across at some point or another. There was one that I had not read before, that really spoke to me. It had a quote that expressed exactly why I love the blogging world, and why I love to share our story – even on days when it’s hard because I’m feeling extra vulnerable. It’s from a post called ‘What we see is never the whole story’.

“Honestly, I think the key is to tell the stories most raw to us… It’s crucial in this day and age for us to make connections and find the stories that show us we are more alike than we are different, that the human experience is universal and we are not alone.”

Human connection. Finding others, whether I know them in flesh or only online, who understand my journey, my emotions, or a small piece of either, brings strength into my life. Human connection reminds me…

I am not alone. 

Many others have braved this journey before me, and surely many more will follow. Sometimes we have the same feelings on an issue, and sometimes we see things differently. But, we all understand how incredibly complex and life changing our situation is, and we’re all open to honouring one another’s voice and journey.

I’m so thankful that I’ve made these connections because one of the major things I’ve been able to come to terms with is what our family journey will look like moving forward. When Maddy was very young, people kept telling me, “It will get easier.” But, you know what? It didn’t get easier.

It became incredibly frustrating waiting for that magic moment when things would get easier. Here we sit at 17 months atop a pile of atypical stressors that we could never have anticipated.

betterWaiting for things to get easier was frustrating, and frankly, I think hurtful to us. As we’ve learned, things are likely not going to get easier. We understand now what people told us months ago. Our life compared to three months ago, isn’t easier, but it is better. We are learning how to cope. We are learning strategies to help Maddy communicate with us more effectively. We are learning how to help her navigate some of the more challenging aspects of life. We are learning to let go.

I felt as though I had reached a milestone of my own a few weeks ago, when during our intake to Thames Valley Children’s Services, the woman I was speaking with asked me, “What are your hopes and dreams for Madeleine?” I said,

I want her to be happy. I want her to have tools that will enable her to enjoy life, and school in a few years. I want to help her to reach her dreams. I want to give her the support that she needs so she can reach her own potential. I want her to feel valued. I want her to feel loved for being exactly who she is.

Before Madeleine was born, I think I would have been able to honestly give that answer. But, I’m not sure I would have recognized that the process in itself is far more important than the outcome. I now recognize, that for whatever reason, if Maddy (or another child) isn’t able to accomplish something I assumed my children would be able to (say graduate high school), that will be okay.

As long as we have given our children the tools within our means to reach their goals, that will be enough. As long as our children grow up knowing our love without ever having to question it, that will be enough. As long as our children recognize, in a way that they are able, that they are worthy of value and respect, that will be enough.