Three truths

I’ve joined a group of mums to answer a Monday question. Today’s is:

“What are three truths about living with a person with special educational needs that you wish everyone knew?”

Kevin and I both answered this so here’s his response and then mine.

Kevin:

It’s a journey where you learn to be patient. When milestones come, you celebrate them joyously and purely.

Coraline is a child first and foremost, like every other child. She has likes and dislikes, happiness and sadness (and everything in between) - she knows how to behave to get what she wants. If she doesn’t want to do something, she won’t do it.

It is up to us, as parents of a child with additional needs to create an attitude and expectation of things always going well (good advice for every single person anywhere). It doesn’t mean that it always does go well, nor that you cannot be disappointed or sad when challenges and unexpected setbacks do come your way, it is more the realisation that by just accepting and acknowledging that challenges come for everyone, and that dwelling on them doesn’t change them, or make you feel better. Then you are able to keep moving forward, even if these setbacks sometimes slow you. You will soon be on the up once again.

Liz:

I will answer this giving the example of Coraline’s annual Opthalmology appointment which we had today.

- That as her parents, we are just parents like any other

- That we have quite a few appointments; either therapies or medical. You adapt to how it is, as with everything in life. Today it was Opthalmology. We had been to the Paediatrician for our annual check-up last week and she used the terms “sensory defensiveness” and “sensory seeking” which, even with all my considerable reading, are not terms I had heard before. But they made sense to me in terms of how Coraline does not tolerate certain things e.g. most notably medical appointments if professionals come into her space. Today I knew that I had to try to keep Coraline occupied as we waited, and try to keep her settled during the appointment. I knew they might tell me things that I would need to absorb afterwards.

Today’s news was that she does need glasses (I was aware this could be the case as 60% of children with Down’s syndrome require glasses at primary age whilst 6% of typical children do). We were not able to get the measurements for the glasses today as it would have meant putting drops into her eyes to paralyse her focusing muscles (three sets, which sting), and I had heard there is another way explained at a talk I went to given by an expert in visual development in children with Down’s sydnrome, that I wanted to investigate first. As her parent, I made this decision. I knew that I could not explain to Coraline what was about to happen as she would not have understood me.

As a parent you are aware (you are aware in your research, you are aware of giving your consent, you are aware of the medical professionals doing their utmost for Coraline and are grateful, you are aware of behaviour management and feeling vigilant, you are aware of your own emotions). For a visit such as today, I use the technique my goals coaches have taught me. Visualise it going exactly as you would like in advance. Just picture it going well.

- That our child brings us joy, just like any other child