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Writer's pictureminie

No more harsh therapies for my special needs child


There is another way to do therapies


I posted a brief video taken during a physiotherapy session, where my baby girl is crying, desperate, and social media blew up at me.

People saying that she’s clearly in pain, people who would walk out of there if it was their child, people criticising us for forcing her to do an exercise that is clearly too stressful for her.

So let me explain it.

 

I have regularly driven my girl to therapies around Sydney since my baby girl was 5 months old. Now she’s almost 2 years old.

I’m no therapist, but I have been attending every single weekly session of speech therapy, occupational therapy and physiotherapy that my girl has had in the past 16 months.

I know what’s happening in that video and I can confidently tell you: no, she’s not in pain.

 

Four things were happening:

1.    She’s scared of falling. She has some vestibular and proprioception delays, which means that when she moves sometimes she doesn’t know where she is in space, and she still has difficulty moving the limbs independently from one another. We’re working very hard with Occupational therapy on exercises to give her more confidence with her body and with the space around her, but in the meantime, we need to work on her muscles too.

2.    It’s a hell of a workout for her because of her hypotonia which means low muscle tone. Let me use a metaphor: for her, it’s like going on a planet that has a different gravitational force.You know how on the moon we feel lighter and we take big jumps that we wouldn’t be able to take on planet Earth? On the contrary, on a different planet we would be forced to the ground due to its higher gravity. Likewise, it takes a lot more practice and effort to our girl’s muscles to stand and walk, compared to children with a typical muscle tone.

3.    Like every other kid, she doesn’t like to be forced into doing a hard work and crying is her way to communicate it. And let’s face it: physiotherapy is rarely pleasant even for adults, even when it doesn’t hurt.

4.    She was having a rough day, she was tired and this might have contributed to make her a bit more unsettled than usual.

 

Is this workout very uncomfortable for her? Yes. That’s what makes her a superhero to my eyes.

Is it a torture for me, to see her this distressed? Absolutely yes. Over time I have been able to “desensitise” myself a bit, but I have to be frank: it is still a torture for me when she’s so unsettled. And, in general, it’s not like I’m happy to drive her to therapies for 40 minutes back and forth, discussing levels of developmental delays and possible disability equipment, learning exercises that my girl sometimes hates and then repeating those same exercises throughout the week. I’m not having a blast, believe me.

 

However, that video was shared publicly to show you all what hypotonia looks like, what a rare syndrome brings, what a special needs journey means. It’s not pleasant, it’s hard work. It’s regular therapies that suck. It’s overwhelming for her and for us.

But she’s not always this distressed and that’s because I said NO.

I decided a year ago that there MUST be another way to do therapies.

And I let go of past therapists who didn’t take on board my feedback.

Let me explain my point of view.

 

Therapies involve a therapist, a child, a space, sometimes visitors like therapy students or a different type of therapist, and of course a carer (the parent, in our case, or a support worker).

Each of these actors might help or affect the therapy session.

1.    The therapist might be extra focused on their goals at times, they might have a style or a personality that doesn’t connect well with your child, they might even have days when their productivity and energy level might be a bit low (which is absolutely human and normal).

2.    The child might be more tired than normal, hungry, constipated. They might be teething or they might find new exercises more challenging and frustrating.

3.    The space might be noisier than usual or have other sensory related issues, like the light. Or it might be a new room with new equipment that can look frightening or even too colourful.

4.    Therapy students could affect a session as well: although they have the best intentions, and it’s important for them to have some experience with actual clients, they might be a presence that can interfere with the mood of the sessions.

 

As parents, therapies are work for us too:

-       We have to orchestrate the other stakeholders

-       We have to understand what goals come next, what is reasonable to expect and in what timeframe

-       We have to understand how to put in practice at home what we saw during therapy, so that our child can progress faster and more effectively.

-       Possibly, we also try to understand if the therapist that we have is the right fit for our child, since paediatric physiotherapy, occupational therapy and speech pathology are not our field of expertise. That’s not our job and, at the beginning, we don’t know what we should look for, in a therapist.

 

All this was in the back of my mind when I said “No, I will not accept that my child remains in pure distress for 50 minutes straight”.

Back then, the sessions were basically a dialogue between the parent and the therapist, working on the child.

 

“But you see, she’s progressing!”. “This is what physio looks like”. “Eventually she will get used to this”, were some of the answers from past therapists.

And I get it: working on the child while communicating with the parent might be what some therapists are used to.

But, in my opinion, this is not ok.

I’ve seen it: when things are not going well, it is incredibly easy to start blaming each other.

If the child is not progressing, some therapists might fall in the trap of thinking that nobody practices with the child at home, while the parent might think that the therapist is not good enough.

If the child is distressed, the parent will blame the therapist thinking that they’re not able to connect with the child, while the therapist will think that the parent is overbearing and should stay out of the session.

Everyone gets stressed and starts assuming that the fault is the counterpart’s while, in fact, the biggest problem is that nobody acknowledges the most important thing: the child is the protagonist of the therapy journey and deserves to be treated as such. Period.

 

On the other hand, when therapies evolve around the child, the parent and the therapist play the part of the electrons around the core of the atom.

They should communicate their intentions, expectations, wins and roadblocks not as two different tennis players who exchange a ball, but as team members of the only player who can score the point: the child.

I’ll repeat this: the child is the only player who can score the point. Everyone else can only facilitate the point as the child’s team.

Once you get into this mindset, you’ll find that:

-       Parent and therapist can give each other very valuable tips, since one knows what the exercise is aimed for, and the other one knows the child better

-       They can share the victories, because they will be the results of a share effort

-       There will be no blame, no guilt, no stress involved, but simply the focus on how to facilitate the session to give to the child the best chances of success.

 

With all this in mind, I created a very basic handbook for therapies, that I want to share with you, hoping that, if your child has to do therapies too, this can help you set the sessions in a mindful, positive way.

You can download it for free here and add your child’s name to the file.

You can even use it simply for inspiration and create your own handbook, that can address the shared goals of therapy, how you would like the routine to be established, how the communication aspect would work best, any sensory issues you might want to avoid.

Most of all, the handbook of therapies should be a simple, quick reminder for both parent and therapist of the reason behind it all.

Why are you doing therapy? What do you want your child to experience during those sessions?

 

If your therapists take on board your concerns, this will be a great opportunity to connected with them even better afterwards.

And if they don’t…well, I guess you owe it to your child to move on and shop around for therapists that better suit your needs!

 

Going to therapies is still hard work for me, but at least now I have the tools to make it a valuable, tolerable, many times even somehow enjoyable journey for both me and my baby girl.

I hope that the handbook can be as helpful for you too!

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