Raising a child with special needs: 'Sometimes we have to leave Amos behind and I hate that'
As part of our Mums Who Inspire series, we sat down with Adrian Wood, an author and mum-of-four whose youngest child has special needs. If you have a story that you would like to be featured, email mary.byrne@sheologydigital.com.
Mum to three perfectly healthy children, Adrian Wood decided that one more baba would complete the family, and so Amos was born.
However, something wasn't right, and Adrian and her husband would soon learn that their youngest child has autism, although the family are still waiting on genetic testing as many of his "defects" are not explained by autism.
"We had whole exome sequencing done and then our geneticist saw some unusual things so she wanted to do it on our other two sons," the mum-of-four told MagicMum. "The results will be in by November."
"Because he had several midline defects, we feel fairly certain there is another explanation and many of his issues are not explained simply by autism. We so want something to fill in the blank or even another family like ours."
Amos is a bright and happy three-year-old – the "golden boy" of the family.
However, not everything is sweet in the home and as any parent caring for a child with special needs will know, life can be incredibly frustrating and tough.
"You know, we have always been very honest about Amos and the children have travelled the journey of seeking a diagnosis along with my husband and me," the mum admits when asked how she explained Amos' condition to her other children – 11, ten and eight.
"They've cried salty tears and honestly lamented his special needs and loved him fiercely and beyond measure."
Having three other kids means Adrian often finds herself in a bit of a predicament, especially when it comes to family outings.
And sometimes she will have to leave Amos at home so her older kids won't miss out, although sometimes it's the older siblings who have to stay put.
"It's always a game of give and take. I try to get a sitter to keep him so we can take the older ones to do things or sometimes vice versa. Everything is a decision and the consequences must be considered. This morning, I took the four of them to the water slide and he detested it.
"I sat on the side with him and they played and I learned that next time, I need to get a sitter to go to the water slide. I don't want my older children to miss out on things and opportunities, but that means we have to leave Amos behind and I hate that."
Talking about how much Amos has changed their lives, Adrian told us:
"Every aspect of my life, our life, our lives is different. It's not easy, it's frustrating and hard as hell, but so is climbing Everest, running a marathon and giving your heart to a child with special needs.
"He shows us every day what real success looks like and we notice the tiniest of things and love today. Sharing our life has quite saved me heartache and the biggest surprise is that it has unearthed and birthed such amazing joy. Right there all along, but I just had to take it."
The writer shares updates about family life on her blog, Tales of an Uneducated Debutante, something she began when she realised that Amos wasn't progressing in the typical way.
"I started thinking about it and as time went on and he did not catch up, I felt like I would suffocate if I had to swallow the way that felt. I had done that when I lost my big brother so many years before (I was 15 when he died of cancer) and well, there was no more room for heartache."
The mum-of-four recently wrote an open letter to other parents who find themselves caring for a child with special needs on her blog – and it really touched a cord with us all.
Here is an extract from her post:
Maybe you're in the midst of these feelings and truthfully, I am too. Life was simpler before Amos and sailing was smooth for the most part. There are days that I close my eyes and think about how easy everything once was, though hindsight is tricky. Unwillingly joining a club that requires such dedication has been a different journey, a twist in the novel called life that has catapulted our existence into the wilderness. Life is different now, but somehow it's better and when you shrug off the minute details of difficulty, you're able to embrace the tapestry into which your family is being woven.
You can read the full post here: To the mama who is new to the special needs club
Adrian's attitude is so positive and how she handles her son's diagnosis (and lack of diagnosis in some instances) is incredibly insightful.