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Special needs parenting: “I chose you”

Special needs parenting: “I chose you”

Have you seen the film on Netflix called “The Willoughbys”?

It is our six year old triplets absolute favourite (this week anyway!).

It wouldn’t have been one I’d have thought they’d enjoy because it has what I feel are quite “mature” themes, including the absence of parental love.

In saying that, they think it is absolutely hilarious and when chatting to me casually about it I was able to see that they have most definitely grasped the overall messages.

It’s funny isn’t it, how children’s films can appeal so little to adults yet be absolutely spot on for the kids!

Our little man who has spina bifida, hydrocephalus, epilepsy and learning disabilities in particular really enjoys watching it.

His favourite part is the song that goes along with it, called “I chose you”.

Jacob is naturally drawn to music and uses it to communicate with us if he is having a seizure or he is struggling to express himself.

Music will generally bring him out of a non epileptic seizure and sometimes even the bigger epileptic ones.

If nobody else is around to have to endure my “singing”...we will sing it together and he always makes sure to look right into my eyes and say, clearly, “I chose you”.

That’s pretty much the point I have to hold back the tears and pretend like I’m not a soppy overtired mama!

What a perfect opportunity though to discuss his disabilities with him!

He has asked me in the past if I hate his spina bifida and I always say “no”.

To me, hating that is hating a part of my child who I love unconditionally.

Jacob without his medical conditions is not MY Jacob, and I wouldn’t trade my superstar for anything.

So I tell all three, often, “I chose you” and make sure they know I will always choose them exactly as they are.

Given his behavioural difficulties that mimic ASD in a lot of ways, I use a line “Now I found the strength, to make a change, look at the magic I’ve found” to gently remind him that sometimes change can lead to beautiful things.

It sounds really silly, and I can understand that to other people it probably is.

It works for our family though so I’m not worried about how it looks on the outside.

Another great one he likes is “Ohana means family, family means no one gets left behind or forgotten” from Lilo and stitch.

We actually have a decal on our wall of this quote and family pictures around it.

If we are out for a walk and Ben and Chloe want to do something that would exclude Jacob e.g. climbing trees, we compromise and set a time limit to it.

Then we come back together and Jacob will happily say “Ohana” and move on.

For a child with learning disabilities, it is remarkable to me that he can retain and genuinely understand the sentiment behind these things!

Despite being a complete musical flop myself, it feels so precious for me to have found a way to communicate with Jacob that is relaxed, informal and great fun!

We now do music as part of our daily routine and will sometimes have kitchen discos!

Thankfully for our neighbours, we live in a detached house....

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Katrina Dorrian

Meet Our Blogger

Hi! I'm Katrina, I have 6yr old triplets; one who has spina bifida, hydrocephalus and epilepsy. I also have MS, so we've a busy (but happy) house!

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