What if my child has special needs?
Ever since the first Togetherness Redefined book was published earlier this summer, I've been thinking about how many questions and "What if"s I didn't even consider for those first 52 togetherness tips. And when we talked about What if I feel disqualified? a few weeks ago and you responded with emails, comments, texts, and calls, I knew there were more questions out there.
Last week, I was minding my own business in an online writing group when one woman’s story took my breath away. Her name is Angela Rivas, and when I read her introduction, I could immediately see that she was all about celebrating families, and I knew I had to connect with her.
Angela is a photographer mom (mum) from Sydney, Australia, who launched her kids into adulthood as a single parent and then heard a God-whisper that set her off on a worldwide journey to interview and photograph children and adults with Down syndrome to highlight their skills and talents, to celebrate their lives and families, and to celebrate their special needs.
I was immediately inspired by the way Angela was celebrating families, and I had never seen anyone celebrating special needs quite like this before, so I asked her to hop on a podcast interview with me.
I realized that in all of my writing about family togetherness, we haven't even mentioned families and children with special needs, and I thought our little podcast show about family togetherness would be the perfect place to start that conversation. I had a feeling Angela was going to teach us something about special needs and family togetherness. I’m so glad I did. In our conversation, Angela shared that as she's interviewed families who have children with Down syndrome, she's observed quite a few family togetherness blessings:
Unashamed love for each other
Expressions of affection
Emotional honesty
Celebrating every day
Sibling bonds
A mother's intuition
Living in the moment
Being truly present
Kindness
Joy and laughter
And when I admitted to her that I often don't know the best way to connect with and support families in my community who have children with special needs, she knocked my socks off when she said,
It's actually us who needs the support - we're the ones who are blessed when these families share their lives with us.
Wow. Yes. I'm starting to get it now.
While Angela's work is with families who have children with Down syndrome, I hope you'll agree that so many of these family togetherness blessings can be seen in families who experience other special needs, too.
In the past, I've struggled to understand why some children have special needs and disabilities. In a world that celebrates the highest achievers and elite performers and pushes everyone to look and speak and be a certain way, my heart would break whenever I saw a child in a wheelchair or unable to speak, or even someone with a learning disability or developmental delay. Something in my heart was telling me that the children with these special needs were a gift - that they had something to teach the rest of us - but I spent a lot of time turning away, not knowing how to understand, and probably discouraging or even offending people I care about.
This mindset that something is "wrong" when someone has a special need doesn’t serve us well - it’s why we lose sleep worrying that it’s our fault every time our kids get a cavity or some weird foot fungus.
It’s why we needlessly battle shame when our kids show signs of a learning disability or delay in some areas. It’s why we fear something is wrong with us when our kids are not as driven or smart or cool or well-rounded as other kids we know. It’s why we don’t know what to say when we see someone with a child in a wheelchair or without speech. This week, though, something has shifted in my mind, heart, and soul. This week, something cracked wide open. I don't want to give too much about the podcast away, but Angela's story about Monnie's mom hoping for a child with Down syndrome and being ecstatic that she gets to experience Monnie's gift astounded me.
I’m starting to realize some of what this gift is - it’s that these families have a daily reminder that life is so much more than rushing here and there, checking off the to-do list, and impressing or achieving or performing.
These families get to experience something the rest of us don’t. As Angela says in this interview, we are the ones who benefit when these families take us under their wing and help us understand things from their point of view. Even though these families have extra constraints, higher medical bills, a higher risk when it comes to things like COVID, more appointments to keep, more medications and doctors to visit, and probably more worries than we can even imagine, they still have so much that they offer the world.
They have so much to teach us about family togetherness.
Looking back over my life, I can see so much truth in that statement. There have been so many times that I have seen acts of extreme love, self-sacrifice, and deep connection in families who have children with special needs.
When I thought about it for only a few minutes, so many smiling faces came flooding into my mind, friends with family members who we say have special needs, who they know have special gifts.
I bet you can think of at least a few, too. So, while I thought I would be writing this togetherness tip to encourage families who have children with special needs in the area of family togetherness, I find myself instead finding courage and learning from these families.
I find myself so excited to lean into these families in my own life and no longer afraid to say the wrong thing or do or say too little or too much. I find myself excited about discovering a new way to do family togetherness. I hope you find courage and inspiration here, too (along with a few resources to go deeper below).
Here are a few photographs from Angela's Instagram feed.
If you want to hear Angela's podcast interview:
Use this link or search for Togetherness Redefined wherever you listen to podcasts.
If you want to learn more about Angela's book:
To learn more about Angela’s beautiful photography book celebrating families with children who have Down syndrome, stay connected with her on Instagram and Facebook.
If you want to have this conversation with your kids:
These books may help:
There are many more (if you know of one, please share it in the comments below), but these I know for sure are GREAT! I read them a few years ago with my kids, and I think they give amazing language to parents wanting to talk about this with our kids.
What about you?
Do you have any family togetherness blessings that have come your way from a family with special needs?
Hop into the email group and join the discussion.