Fears of a Special Needs Parent

Amanda O'Neill by Amanda O'Neill Additional Needs

Amanda O'Neill

Amanda O'Neill

I’m Amanda, I’m 25 and mummy to my little angel Ryan who has quadriplegic dystonic cerebral palsy. I never knew in life what i wanted to be when I...

In an ideal world, every mum and dad plan to raise their children for 18 years they then watch them live their own independent life for about 30 years and hope that their children will come back to help look after them in their final years.

For us special need parents this is not the case.

We have to raise our children for the rest of our lives, we then have the added pressure of making a plan for their lives when we are no longer here.

Being a special needs parent can be difficult as there are so many challenges and fears we face.

It is not just living with my son's disabilities that can be difficult its every other health issue that comes hand in hand with his condition.

On diagnosis day I was told ​ "Ryan has a slight scaring on the basal ganglia part of his brain and is developing cerebral palsy."​

However, today's diagnosis is; Hypoxic-ischaemic encephalopathy ​ level 5 Quadrapilegic dystonic/spastic cerebral palsy,​ oral aversion, ​button fed​ tone management difficulties, ​significant sleep difficulties, reflux​ epilepsy,​ hearing loss,​ vision difficulties, and his latest addition to the list is his left hip is completely out of his socket.

With all these health issues comes major responsibility and the first fear I want to talk about is trusting other people watching our children.

As our children require specific daily care we have a lot of worry about finding people who we trust enough with the tasks at hand.

For myself and Christopher, we have always been lucky enough to have amazing support from people around us, they are all so eager to learn what's best for Ryan and show confidence in dealing with him when he's in their care.

I will admit however I do find myself calling or texting to make sure he's okay to put my mind at rest.​

Another fear I personally face is one where some parents might laugh and think I am crazy.

Ryan is 4 years of age and he still sleeps in the same bedroom as myself and his dad in his own bed.

The thought of not being able to hear his rhythm of breathing terrifies me, the fact he could take an epileptic fit or choke in his sleep is the reason for why we have him in beside us.

I sleep a lot better knowing that I can get to him quickly if any of this did happen and as much as sometimes I do have a laugh at myself I honestly cannot see me changing this anytime soon.

I could continue writing endless amounts of fears I have for Ryan but I will finish off with my biggest fear out of them all.

This fear is one I get upset about and really struggle to speak about.

It is the fear of not having Ryan here with me anymore.​

I could not even begin to put in words just how precious my son's life is to me and our family.

I am a very realistic parent and understand that any serious flu or infection is enough to make Ryan health deteriorate and for him to lose his little fight.

The thought of ever having to continue to live my life without him in it is unthinkable and makes me sick to my stomach and for these reasons I have never taken anything about him for granted, I cherish each and every minute and memory I have with my sweet boy.

Personally for me, raising a child with a disability is the hardest thing I have ever had to experience and will continue to experience.

It is physically and emotionally hard but it is one of the best journeys of my life.


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