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Under Pressure

Under Pressure

Be honest...are you singing along David Bowie’s hit song with that title?! I am now anyway!

Also be honest...are you feeling under pressure at the minute?

I’d guess the answer for most of us would be yes.

Schools are closed, hospital appointments are limited, contact with family and friends is restricted and we have just so many rules imposed on our lives.

Add that into the mix of having a child with complex needs and you’d be superman / superwoman to say you aren’t feeling the pressure of it all.

2021 was meant to be better.

Yet here we are, in lockdown number three!

Our six year old triplets are now being home-schooled by a mummy who has very little confidence in what she is doing.

It is terrifying, the weight of responsibility of educating my little people without any formal teacher training is definitely upping the stakes for me and putting the pressure on.

Our little man with complex needs is not able or willing to engage with home-schooling at all.

In fact, I’ve been fired already, apparently I’m “too boring”.

In fairness he has a point, I am definitely not as good as his school at making this all fun for children.

On top of his education, he is battling a variety of complicated health issues that are all creating frustration within him that is showing itself as challenging behaviour.

I truly believe all behaviour is communication and it is fairly obvious what he is thinking when he throws his sheets and pencils at me and wheels himself out of the room.

His medical appointments are now being done remotely in any way they can but have obviously reduced at a time when he is in crisis.

In the midst of it all, the building works began back in December to adapt our house to be more suitable for Jacob.

While this is clearly a positive thing, it is also additional pressure to have a team of workmen about with a child who doesn’t like change or understand why people are “smashing everything”.

I also have Multiple Sclerosis and for a variety of reasons have been classed as “Clinically extremely vulnerable” which means we have to limit who can come into the house as well as where I am able to take the kids.

We’ve decided it’s too risky for me to go to crowded play parks so I have enormous mummy guilt that the kids are missing out even more because of my own health too.

We are all trying our best to manage, but I know so many of us can relate to the feeling of being under too much pressure.

Special need families have the additional pressure of trying to keep our little people safe with reduced support at a time when you actually need even more.

It can feel very lonely if your child is unwell and you don’t have your normal routes of asking for help.

Jacob has started taking seizures through the night, which means I don’t sleep well and watch his “spy cam” to make sure I can see him breathing.

It can feel so intense.

I think now especially it is so very important to practice self care whenever you get a chance.

I have excellent support from my husband (who is working from home) and my mum who is our “bubble” household as she also helps so much.

Our other family and friends support us in any way they can within the limitations covid has put on us all.

Actually, one of my friends nominated us for a “shielding care package” of groceries from an amazing local farm and we won (along with lots of other very deserving families)!!

There are so many good people out there!

I hope you have good support in place too and if you don’t, please find some.

There are a lot of charities still running to support people under too much pressure right now so use any resources available to you.

Stay safe and remember this is all temporary!

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!

View Katrina’s Profile

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