Additional Needs

Who Is That in My Home?

Posted by Rochelle Followes on 27th August 2018 Additional Needs, Advice & Support, Disabilities

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Accepting you need help is never going to be easy.

You don’t want to come across like a bad parent, you are terrified of the social services and you are conscious of what others may think about you.

Well I was anyway. I saw it as a sign of weakness that I couldn’t care for my own son.

But the truth is, I could care for my son, but not care for myself at the same time.

There was no weakness, but pure exhaustion, as my mind and my body began to tell me over and over again that I could not keep going the way I was.

And there was the reality that my son was too complex for me to care for alone in the week when his Daddy was working.

For the time being anyway, whilst we waited for a more suitable home, and for Zachariah to start school.

The strains of an unadapted house were affecting my physical health.

The increase in seizures meant I could not leave Zachariah unattended, not even for a toilet run some days, (you soon learn how to hold it in).

The therapy was too much for just one carer as he has grown so much.

Things were changing, but I was not able to keep up with it.

Just putting Zachariah in his standing frame is a huge job, which leaves me feeling rather tired afterwards.

For Zachariah to continue having all his needs met, and for me to not run myself to the ground, I needed to get some help in the home.

Summer holiday were approaching, and I just knew it was the time to request PA hours.

He would be leaving nursery and would be at home with me for around 8 weeks.

So, I had the assessment done and was delighted to be awarded weekly PA hours.

It was so strange, but I knew only good could come from it. I selected 3 close people who know Zachariah really well and started in July.

It was overwhelming and extremely hard to accept that it was happening.

Having someone in my home is definitely going to take some getting used to.

Not to mention the training!

Trying the teach someone how to care for your child is harder than I thought it would be.

But I guess that's because we don't necessarily think about what we are doing, we just do it!

Then there’s the trust you put in others.

Every time you leave your child with a new person or at a new place, it will more than likely come with more worries and concerns.

When we first left him at nursery and at Derian House, I had similar worries, and anxieties.

As you don’t truly believe that anyone else can care for your child the way you do.

But I’ve been proven wrong a few times now, and seen the rewards of Zachariah spending time with other so it has gotten easier for sure.

And not forgetting the confidence you need to help others gain when looking after your child. I know our PAs struggle with this.

They do not have the confidence in themselves in particular areas to truly be the best carer for Zachariah.

But hopefully with mine and Tim’s help they will develop this.

Which can be a challenge where you also doubt yourself.

Even after 4 years of dealing with seizures, I still get anxieties now.

I worry about the next seizure and if he’ll need rescue meds.

So, to try get his PAs not to worry too much is quite hypocritical.

But the main thing is, the beginning of this new chapter has been a great one.

Zachariah is really enjoying his time with some of his favourite people, and I am starting to see how I can get some respite and do some work with him being looked after properly.

We just need to adjust a little, and allow the PAs to settle in nicely to our family.

I am now not ashamed to talk about it. My four-year-old son has 3 PAs and that’s OK!

Because my son also has disabilities, complex medical needs, plenty of appointments to keep us busy, daily therapy routine, feeding issues, and sensory needs.

If you are struggling, and are worried what others may think, I really hope this gives you the courage to step out and ask for help.

I have no regrets.

Much love,

Rochelle (My Daily Miracle) xx