Additional Needs

Agreeing to Disagree: Parenting Kids with Special Needs

Posted by One of the Wonders on 8th December 2016 Additional Needs, Advice & Support, Disabilities

Share this article

Nearly all of them have been with us through one crisis or another and I trust their judgment.

And they are all willing to take my opinions on board when discussing treatments and care plans.

All but one, anyway.

I have just never got along well with Orthopaedics.

Which is a real pity, since between Miss Z’s progressing scoliosis (curvature of the spine) and osteoporosis (fragile bones), we spend a fair amount of time with orthopaedic surgeons.

And I spend a fair amount of time during and after seeing them, wanting to bang my head against a wall.

Why?

Well, I generally find that they have very little interest in Miss Z as such.

She’s rarely acknowledged and we have had appointments where the doctor hasn’t even examined her, just looked at the X-rays of her spine or fracture. And they also seem completely taken aback if I suggest anything.

They have an approach to treating scoliosis, and it is the approach they will use, and nothing else will be considered.

Now, to be fair, I don’t think all orthopaedic surgeons are terrible people.

After all, that one on Grey’s Anatomy seems nice enough...

But seriously, I have met parents who like their child’s orthopaedic surgeon.

And I know that at the end of the day, scoliosis management is all about trying to prevent the curve from progressing for as long as possible before spinal fusion surgery becomes the only option.

I also know there are kids out there who have had surgery and are much happier for it.

But I guess I just need this information wrapped up with a bit more attention to public relations (PR) – or in my case, parental relations.

So, I’ve been wondering for several months now how Miss Z’s orthopaedic surgeon would react when I told him that I had decided to try something new.

For several years now, at the recommendation of the orthopaedic surgeon, Miss Z has worn a hard, plastic spinal brace (or a thoracolumbosacral orthosis (TLSO) if you want to get technical about it).

Initially, when she was small, the brace worked relatively well.

But as she has gotten older and bigger, we’ve faced a number of problems.

The most concerning for me are that the brace puts a lot of pressure on her PEG (which subsequently has caused problems with her feeding tube) and because it is cut so low on her hips, it makes it uncomfortable for her to sit upright or lean forward.

After discussing the problems with the spinal brace with various therapists, I decided to try a different approach – a Second Skin splint.

It is kind of a mix between a onesie and a corset. In other words, it is made from a soft, flexible material, but has boning along the back and sides to properly support Miss Z.

After a technical measuring session, Miss Z received her custom-designed splint a few weeks ago.

She sits lovely and tall in it and seems completely comfortable, too.

Plus, it has the benefit of not putting as much pressure on her PEG (since it isn’t hard plastic pushing into her tummy) and she’s able to move better thanks to the flexible material.

I counted it as a success.

But I wondered what her orthopaedic surgeon would think.

He was, after all, the driving force behind the spinal brace and I didn’t think he’d like me deciding on a different approach.

In the end, it was a comical appointment.

I explained why the spinal brace wasn’t working for us. He acknowledged the problems with the brace.

I explained how Miss Z now had a Second Skin splint and offered to show it to him to compare how it controlled her scoliosis.

He ignored the offer and suggested how to improve the spinal brace.

I offered to compromise, saying that I was happy for Miss Z to wear (a better-fitting) spinal brace at night but that during the day she was going to wear her Second Skin splint.

He didn’t comment. Instead, he organized an appointment for Miss Z to be casted for a new spinal brace.

When we left the appointment, I was initially frustrated with the conversation – or lack thereof.

But then I remembered advice from Miss Z’s first paediatrician, at the start of our special needs journey.

I was telling him about my frustration at repeated attempts to test Miss Z’s hearing.

I didn’t think anything was wrong with her hearing, but in order to get the audiologist to declare that, Miss Z had to pass a hearing test. She had taken the test several times and always failed – not because of her hearing, but because the test was beyond her developmental capabilities at the time.

After listening to my rant, the paediatrician commented, 'You know, you don’t have to do the test if you don’t want to. She’s your child, you are the one who gets to decide.'

Obvious, I know, but it was an epiphany moment for me.

I’d never before considered NOT following the recommendations made by Miss Z’s long list of specialists. I had always assumed that as specialists, they knew best.

Five years into special needs parenthood, I have learned that sometimes I do know better than the specialists. Not because I have greater knowledge of their specialty, but because I have a much, much better knowledge of my daughter.

So, I’m OK with the orthopaedic surgeon’s approach.

He is doing what he believes is best for a child with scoliosis.

But I am going to do what I think is best for Miss Z.