Jealousy, nervousness and fear

This post has been percolating for a while while I let the news settle in. On one hand, I wondered whether I should continue sharing my life, but if I don’t, then maybe I could have helped someone who needed it.

My darling boy has been diagnosed with a disability, a developmental disorder. It is heartbreaking but it is also a relief as it represents the huge challenges he faces compared to other kids his age. We are exhausted and tired, and knowing there is something behind our challenges brings us a sense of peace.

As gentle and respectful parents, who value our child’s autonomy this journey of assessment and diagnosis has been difficult. From the beginning of life, we have been indifferent to milestones, preferring to let our son develop at his own pace. We felt sure that he would reach every milestone in his own time, but as milestones become further and further behind, it became impossible to ignore. Not out of a sense of knowing our child is normal, but for his own sake. If we ignore his speech and language delay, believing he will catch up, what effect will that have on him long-term? No one can really tell you the answer to these type of questions, so like the rest of parenting, you just do the best you can.

The machinations of society and the desire to put all children in one basket lead us to compare and contrast the development of children. But at some point, do we as parents have to consider that while we don’t want our child to have to conform, would it be limiting for him if we ignore the advice of early intervention? Just the word itself, intervention, has dreadful connotations. While I struggle with the concept of pushing him too much for something that may come naturally, I have to admit the work we have been doing with the OT has helped us to manage day-to-day. Without strategies and support, we face extreme 30 + minute meltdowns where he becomes uncommunicative.

I’ve reread this blog post from The Minimalist Mom probably 10 times now and each time I gain something from it, recognition that we are not alone, courage to share our story, a sense of knowing how resilient and patient I am as a mama, and the knowledge that while there are so many challenges ahead, we will face them as a family who knows we will make it.

For us, like Rachel and her family, minimalism makes a huge difference. Less clutter means twirling, spinning, jumping and running is less dangerous, fewer belongings to look after gives us more time to play, less debt means needing to work less. Choosing only what is important to us, and focusing on that is key. We can’t do two activities out of the home in one day, we can’t have playdates and go shopping, and then have another big day tomorrow, it is overwhelming and creates havoc for our child. Knowing other families with similar challenges experience the same issues, makes us feel less alone.

One of the biggest personal challenges for me in 2018 will be overcoming the challenge of comparing myself and my child to others. I’m only at the beginning of this but I know I will be able to grow and feel safe and comfortable where we are, in our own space and our own world. And this year we bring another baby into our world. Another scary huge leap for anyone, but with a big diagnosis and the threat of a scary pregnancy and birth the next six months will be an exercise in letting go of fear, believing in myself and my family, and making peace with what comes. And most importantly, knowing that what is important to me, is all that matters.

4 comments Add yours
  1. So many virtual hugs going coming your way from a snowy mountain town in Canada. Recognized so many of my own thoughts and emotions around my son’s diagnosis (and the years preceding it) in your post.
    Congratulations on the baby number two! Siblings have been so good for our non-neuro typical child. He’s working on social skills with his B.I. and it’s great for us to use some of those exercises with his siblings.

    1. Wow, thank you Rachel. It means a lot to have a reply from you! Your post helped me talk about this, more than anything else I’ve read or heard. I couldn’t frame it the right way, I couldn’t write it in a way I hoped people would understand. Thank you about baby 2, I think it will be good too but I am also quite terrified of how we will cope. I know we will but I want our family to thrive not survive! It is a big year for us no doubt x

  2. I’m just beginning my journey into minimalism as well as a diagnosis for my 4 year old non neurotypical boy. I’m so ready to just simplify our lives so we can slow down and focus on the things (people) that really need our attention. Thanks for the post. It’s nice to know we’re not alone.

    1. Hi Jen, thanks for the comment. I hope the diagnosis process gives you answers. Minimalism has helped me in so many ways, it’s extraordinary really xx

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