A Parent's Perspective of Cerebral Palsy

Hello!

For those of you who are unaware, March is always a very exciting month for me. It is Cerebral Palsy awareness month, the anniversary of 'Life as a Cerebral Palsy student' and it is my birthday. March will mean that there is an even bigger push about awareness about Cerebral Palsy which in my opinion is great, although I appreciate my opinion is slightly bias! The core of raising awareness is often teaching people about the basic principles of Cerebral Palsy in the hope that they gain a little more understanding.
  • Cerebral Palsy is the most common motor disability in childhood
  • Half of children with Cerebral Palsy were born prematurely 
  • Cerebral palsy doesn’t mean never walking. Many can, many will.
  • There are four types of CP: spastic, dyskinetic, ataxic, and mixed.
  • People with Cerebral Palsy use three to five times more energy than others
  • Every case of Cerebral Palsy is as unique as the person who has it
  • Three in four kids experience recurring pain as a result of Cerebral Palsy
  • Four in five kids with CP can talk (some too much)
  • Only one in ten kids with CP have severe visual issues
  • CP affects different parts of the body: monoplegia, diplegia, hemiplegia, triaplegia and quadriplegia 
However, despite facts about Cerebral Palsy being vital awareness, I wanted to do something a little different. I know that Cerebral Palsy awareness month will focus on the individuals who have CP, in many circumstances this is a reliable source of information, we are the ones who know what it is like! Yet it would be misleading to say we were the only people affected by CP. Parents who have children with Cerebral Palsy will see the daily effects, they will endure the numerous hospital appointments and they will probably be the one to pick up their child when they fall! Their perspective is equally important.

Thank you to Amanda for writing the third guest blog post for 'Life as a Cerebral Palsy student', I hope you all enjoy reading it! Not only does Amanda have a son with CP, but she is also an author who is raising awareness through her new book, TJ and his Wheelable Chair’.

~ Chloe x

"My name is Amanda Kehoe and I am a parent of three beautiful children, Emily who is ten years old, Tadhg who is eight and Dylan who is five.  Tadhg was diagnosed with Cerebral Palsy when he was ten months old.  Initially when we got the diagnosis for Tadhg we were devastated for him.  We didn’t know what this meant for his future, we just knew it meant more challenges and obstacles to overcome which at the time seemed so daunting to us.  Would we be able to help him on this journey? would we be good enough as parents to ensure he got the best out of his life?  It was the first time I felt totally alone and didn’t know what to do.  Parenting was hard enough anyhow but this was entering into the unknown and I was so afraid that I was not going to be able to meet his needs.  All I wanted was to be the best I could be for him, I wanted him to get the best level of care that we could possibly provide for him so he would have every opportunity to reach his potential.  This was my driving force, Tadhg needed plenty of help and plenty of love along the way and he was my son and no matter what label he had, he was always going to be Tadhg, brother to Emily and our beautiful baby boy.

The first few months after Tadhg’s diagnosis were the most difficult, I could deal with the diagnosis but it was all the negativity that surrounded it.  I felt nobody was seeing his potential, it was like everyone wanted to support his disability rather than support his abilities.  As parents, it was such a difficult time as we could see the potential in our beautiful boy and we needed support, we were entering the unknown and we hadn’t a clue how to deal with it.   We had a daughter who was just turning three and we knew Tadhg needed so much extra support from us so we needed to ensure we created a good balance so Emily wouldn’t feel left out and resent Tadhg for the extra attention he was receiving.  At the time of Tadhg’s diagnosis we had no service, he was on a waiting list even though the paediatrician had expressed how early intervention was the key.  I felt we were fumbling in the dark not knowing what we were going to do. 

I spent hours upon hours on the internet each night when Emily and Tadhg were in bed looking for clinics that could provide therapy for Tadhg to help him.  I eventually came across a clinic in Toronto and when I called them, they were so kind and positive – our first positive experience since Tadhg’s diagnosis.  We decided to go over for six weeks and if the clinic didn’t work out we would all have a holiday and it would give us time to absorb everything that had happened.  Thankfully travelling to Toronto to the clinic was the best thing we ever did.  Tadhg got daily therapy and they taught us to focus on the positive.  Every morning when we would go in with Tadhg, the first thing we would be asked is to tell them three things that Tadhg had done the night before.  At first we used to be going in that morning really nervous, wrecking our brains to think of what to say.  What we didn’t realise was that this practice was teaching us to focus on the positive and focus on his abilities – by the end of the six weeks we were doing this constantly and our attitudes towards Tadhg’s condition totally changed.  We no longer felt devastated about Tadhg’s diagnosis, we were now able to work with Tadhg after six weeks of training so our confidence was restored, we no longer felt frightened of his diagnosis of Cerebral Palsy.  We could see a positive future for our son and that was the best feeling in the world.  Yes, it would have its obstacles along the way and there would always be different challenges, but the main thing for us was that Tadhg was happy and we would help him reach his potential and ensure we would be the best parents we could be to both Emily and Tadhg.  We knew we were on a rollercoaster ride, but we were going to ensure that we would be happy and love the good with the bad, learn and grow from the hard times rather than wallow in them.  Being a parent of a child with any sort of condition is very difficult emotionally because you are always going to have more worries, more challenges and you know it’s going to be a bumpy road for them and all any parent wants for their child is for them to be happy as they can be. 

Tadhg’s Cerebral Palsy has added a whole new dimension to the household.  Yes, there will be struggles as Tadhg needs help with all his needs but that’s part of our life, our other children need our help in other ways and the three of them are treated the same.  Tadhg will always get the extra bit of attention but that’s because he needs it.  He can’t communicate verbally so it’s important for us always to be observing Tadhg for any signals he may be displaying to tell us what he wants.  I love what Tadhg has taught us over the years and he has made us all grow as a family.  My other two children are very sensitive to other people’s needs and seem to have a better understanding and are more compassionate to their friends or whoever they are around.  Tadhg has opened up all our eyes to a new way of looking at the world. 

I often reflect at night when the children are in bed about their future, I worry about my daughter when she will be a teenager and the peer pressures that she will face, will she be okay in school, if she’s out at night, will she be safe.  My younger son Dylan who is now five, I have the same worries for his future, when both Emily and Dylan are adults, will they always be happy and safe. 
With Tadhg our worries are different but everything is relevant to each situation.  I worry about Tadhg getting bigger and myself and my husband getting older, I hope we will always be fit enough to help him physically, will we always be able to cope and have the strength for whatever else life throws at us.  I hope we will always be able to meet his needs and that he lives a very happy and fulfilling life with no barriers because of his condition and then of course my main worry is who will mind him if myself and my husband weren’t around anymore. 

There are a lot of misconceptions about people who are non-verbal and physically disabled.  This can be hard at times as Tadhg can often be misunderstood and seen to not understand situations when he actually does but just can’t communicate it.  As a parent this can be tough as we’re obviously so protective of our children, and especially Tadhg as we’re his voice, his advocates.

As far as being a parent to a child with CP goes, I embrace it every day, Tadhg has taught us so much and we have grown so much because of him.  It’s the simple things in life that make us as parents happy.  We take one day at a time, if he’s happy, we’re happy – when he smiles, it makes our day.    We have met some of the most amazing people through Tadhg who we never would have met.  He has opened up our minds and shown us another way of doing things and to always be positive and open minded as you can never put a limit on anyone’s ability and never underestimate anyone’s potential. 

By Amanda Kehoe

Author of ‘TJ and his Wheelable Chair’"

Popular posts from this blog

A letter to my newly diagnosed self

Observations from a Part- time Wheelchair User