So… we have sensory issues..

It is never easy to receive some negative information about your child and it’s even harder to write about it. This whole thing has been rather like a dark cloud hanging over me, until we decided to do something about it. Funny how not dealing with something and denying it really just makes things worse. And when you start to get to a place of acceptance, and educating yourself about the problem, you start to work with it and understand your child better.

I’ve been on the other side before, as a teacher. Sitting in a meeting recommending play therapy to a parent, who was saying over and over “Is there something wrong with my child?” and my heart breaking afterwards. Even though it had to be said, I could feel her anger and her pain. She didn’t talk to me for weeks afterwards. And actually, I understand. I didn’t blame her at all.

As a condition of entering Nicky’s current school he had to undergo an assessment. This was one thing I was pretty confident about, I was thinking he would sail through. I was more worried about the other meetings we had to go through. Nicky was pretty nervous at the time and for some reason held the pencil lightly. He took too long to do a puzzle and I wrote about it all here. I was pretty dismissive of all of this, but when we received that acceptance letter and the occupational therapy assessment was at the top, I knew it couldn’t be avoided and I booked a session for January.

So off we went. To say I was reluctant about this was an understatement. I went to someone recommended by a friend. I just wanted to get this over with so that Nicky could continue with the school he was enjoying.

The assessment was pretty thorough. They asked me every question under the sun about Nicky, right from pregnancy to day to day experiences. I didn’t mind the questions but I didn’t like where all this was leading. At one point the OT lady said “Prepare yourself. The report will be very negative.” I was made to understand there were definitely issues. And they wanted me to come back the next day for visual perception exercises.

By the next day I was seething inside. I think there was something inside me that felt like I was letting my child down going through all of this. But it had to be done. And doing the maths of how to afford this. R670 a week was just crazy. How the heck? I was keen to rather do a home program. I could do it. I knew it. But they didn’t seem that keen.

I waited about three weeks for that report.

Waiting is its own kind of torture.

And when it came I was prepared to fight it tooth and nail. I was ready to rip it apart just like they had ripped every part of my son with analysis. And I did that for myself. Just to get it out of my system. But in the end I just didn’t respond.

But there it sat. Like a dark cloud.

***

I have a huge respect for Nicky’s teacher. I told her I had received this report and she told me that we could all have a chat about her observations in class, without looking at the report. I found this to be very positive.

We met and she told us that Nicky is getting up and down a lot when he is sitting at his desk. It could be a core issue for which he needs OT. He also takes long to complete something (which I see as perfectionism) but she’s worried that when Grade One hits and they have set times to complete tasks, it could be an issue.

She was full of praises for their in house OT and the ease of the whole thing. I was relieved to hear that she was a lot cheaper.

But to wrap our heads around this whole thing…

***

So what was in that report? And what did it all mean?

Sensory integration is where we receive information about the world around us  through our senses, and our brain has to assemble all of that, make sense of it and react on it.

1. The Vestibular System

The vestibular sense arises from the fluid in the inner ear that is disturbed when the head moves,
causing an awareness of head movement (and body movement) through space. It gives us information
about whether the head is upright in space. Head and eye movements are also closely related and
affect how comfortable one is about moving through space. Anti-gravity control and tone are
influenced by the vestibular system.

…As a result of poor vestibular discrimination, Nicholas presents with low postural muscle tone, with
hyperextension of all the joints in his hands, elbows and wrists, as well as flaring of his ribs and winging
of his scapulae. This affects his endurance during both gross and fine motor tasks, including sustaining
positions such as crawling or completing a more refined fine motor task such as writing on a
whiteboard. During any activity where Nicholas had to sit on a chair, he would after some time, move
into standing, and then sit back down again, as a means to stimulate his muscle tone through
movement…

 

2. The Proprioceptive System
The proprioceptive sense arises from receptors in the muscles, skin and joints, which give information,
back to the brain about the body parts and their position in relation to each other and the
environment. This is a sub-conscious sense for most people, but when it is not functioning optimally,
can cause decreased awareness of the body’s position, and grading of movement and affecting how
one relates to the environment. This affects motor planning on a gross and a fine motor level. It also
impacts ones activation levels and muscle tone.

Nicholas has a high threshold for proprioceptive input and thus seeks out deep pressure opportunities
and activities throughout his day…

 

 

and on it went…

And at least he was good at visual discrimination.

Nicholas’s general visual perception score fell within the 70th percentile (better than 70% of children his
age). His motor reduced visual perception (MRVP) (with limited fine motor involvement) scored within the
70th percentile (better than 70% of children his age), and his visual motor-integration (VMI) (combined
visual perception and fine motor abilities) score was in the 68th percentile (better than 68% of children his
age)…

Recommendations
– Weekly Occupational Therapy intervention focused on sensory integration.
– Sensory strategies implemented at home and in the school environment to assist with his sensory
processing needs including:
o Using proprioceptive strategies including pulling, pushing, bashing and crashing games,
squashing and eating chewy foods.
o Movement breaks during concentration and table top tasks.
o Demonstration of new movements or activities, to provide further visual cues.
– To incorporate activities at home, that were provided during the assessment, to stimulate:
o Midline crossing
o Postural muscle tone
– Wilbarger deep therapeutic brushing protocol, taught by and under the guidance of a trained
Occupational Therapist, to address sensory sensitivities.
– Referral to an Optometrist for full visual screening and assessment to rule out visual concerns.

****

I haven’t included all of it. Just some pieces I feel I would like to note and mostly, those recommendations.

***

As this cloud hung over me, I tried to make sense of it all. It was my turn to do cell group and the topic I chose was making decisions.

I think I was weighing up two scriptures:

Genesis 13:5-15 – Abram made a generous decision for peace, allowing Lot to choose the land he wanted and it all worked out fine for Abram.

For which of you, intending to build a tower, does not sit down first and count the cost, whether he has enough to finish it (Luke 14:28)

I think for me the issue was a lot on cost. To take that leap of faith that we could afford this, whether it was all necessary. For DH this was important too.

I also started chatting to people and getting their opinions. Obviously I valued the OT and the teacher. But I also got input from his Playball teacher who said there were no issues. His previous teacher (my boss) was very supportive of me and my decision. As she usually is.

My sister said something very wise. (She is probably biased as she is an OT. But she doesn’t work with kids). She said: “Be proactive not reactive.”

I guess there were a lot of conflicting info out there but I think the last input had a big impact for me. A friend who also is a Grade R HOD. Willing to help me with home programs and rooting for me as a friend. She read the report and recommended that he do the OT. Purely because it was important for Nicky. She also went on about the brushing protocol and how this would benefit Nicky too.

So I put on my big girl panties and did it. I emailed the OT.

And that was the first step.

***

And I was amazed. Just so grateful. The OT turned out to be such an amazing person. So full of advice and tips. Taking on my concerns and working with me, especially where costs were concerned. I initially wanted to do the sessions every second week to save money but she said he had to do them every week. Otherwise it just wouldn’t work. She would figure it all about where to put Nicky in her schedule and show me the brushing protocol.

Which she did, a week later. And we have been doing it the past few days.

There’s something amazing about doing this activity with Nicky. It isn’t just about helping him with a sensory issue, it’s also helping me. Building a stronger connection with him and feeling like I am doing something in the midst of all of this.

 

Once I’ve accepted what was on the paper I’ve started noticing little things.

The fact that he hates splashing. We got around this by wearing goggles for swimming.

Sensitivity to smells. Having to leave an event for peanut butter because Nicky was so upset about a smell.

Just on Friday having to move in the grocery shop because Nicky could not stand a smell..

Why he bashes so much on the bikes. Why he loves pushing into me.

 

I guess this post is really a shout out to all the moms out there who receive an OT diagnosis less than flattering about their child. It really isn’t easy as a parent, but mostly it gets better once you give yourself some time to come to terms with it.

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