4 Ways that cerebral palsy has affected our lives

Richard_Scope

As part of Scope's content for World CP Day, one of the members of the Network CP Group has written about her experiences as a parent to an adult living with CP.

The fact that Sandra has no speech affected her education because she was a ‘good girl’ and didn’t make a fuss her basic education at school was more or less nil. Although I attended parent’s evenings etc. I was not aware of this until she went, at the age of 16, to Portland College to learn life skills where they said they had to start with basics. At last, she was encouraged to use a talker something I had pleaded for at school but was told she wouldn’t cope with one.

The good thing about Sandra’s school and college life was that physiotherapy and speech therapy was part of the timetable and she was constantly encouraged. This is very necessary as Sandra has a very lazy streak which has been her downfall.

When Sandra was 20 years old she went to her present home, where she is still very happy and safe, a complex for disabled people who have grown older together are like a big family looking out for each other.

However although physio and speech therapy were promised, when this was organized 32 years ago, this soon stopped on a regular basis. The staff do not have time to learn the art of encouraging Sandra on her talker and her eyesight has got worse so she doesn’t get the full benefit. Also, devices have become very complex and she only needs the basics. We pay for physio once a month to six weeks depending on how tight her muscles are.

When Sandra was in her mid to late ’20s can’t remember exactly, the health professionals decided she would be better in a mould as she was experiencing some pain, I fought against this for some time, because I was afraid she would lose movement, particularly the ability to lean forward to do things at a table, but eventually gave in. The

consequences of this in my opinion as her mum are that most of her back, trunk and shoulder muscles now no longer work. It affected her swallowing which led to food being mashed up, which led to bowel and waterworks problems. I cannot say some of this might have happened anyway, it is obvious that ageing is a faster process in those with cerebral palsy; at 52 because of her lack of mobility, she has the body of someone much older. I also see this in many of the residents who live with her.

Me as a mum.

I was 18 when Sandra was born and having no siblings was pretty ignorant of child development. To be told when your child is 9 months old that she has cerebral palsy was devastating. It took a while to begin to understand what this meant there wasn’t much support in those days. Once I got my head around the situation my whole outlook on life changed I ceased to worry about the trivial things and fought like mad for what mattered. Sandra’s dad didn’t see it that way, he resented the time spent with Sandra and never came to terms with the fact that she wasn’t perfect!!!!!! We parted when Sandra was 7, my doctor told me I had two problems and one of them had to go. No contest.

I did all the lifting care etc for the next 7 years trying to give Sandra the best life I could I learnt to drive as train journeys although possible (we travelled in the guard's van) were a bit hair raising at times up and down escalators in Birmingham New Street station with a ‘major buggy’ and 2 suitcases, need I say more.

I never used Sandra’s mobility allowance for a car as couldn’t afford to run two cars and it was better to use it to provide her with an electric outside wheelchair. In those days I drove an old banger and she was able to sit on a seat. Now we purchase a vehicle that we can push a

wheelchair into and also use it privately so we still don’t use her allowance.

When Sandra was 14 I remarried my present husband who has been wonderful both to me and as a dad to Sandra. As I said at one of our previous meetings I have always believed in making Sandra as independent as possible. This upset one of the others at the meeting for which I am sorry. But I didn’t get a chance to explain this didn’t mean abandoning her I am still fighting for her in many ways, that does not stop. However, by being more than firm when Sandra left college and saying she was not coming home to live, we did some research and a residential home in Lincoln 35 miles away seemed best. It meant she got the best of both worlds a social life without Mum and Dad as any 20 plus year old should have and trips home for periods and holidays with Mum and Dad too. It worked but we were always reassured by the fact that if we couldn’t cope at any time Sandra would have an established lifestyle. As the years have gone by this has proved to be the right course; as we found about 4 years ago we couldn’t take her on holiday and more recently made the decision not to have her home. My husband is 80 and I am 70 and full of arthritis (mostly caused by lifting) so we just cannot do the lifting as Sandra has become less able as explained in a previous paragraph.

My biggest problem when taking Sandra about has been the so-called loos for disabled people. If we could actually get her wheelchair in the loo having room for us to lift her has always been difficult. I have only come across one loo with space and wonder of wonders a hoist, this was in the Isle of Man and we didn’t have Sandra with us!

Another thing that I have found once again when researching holidays for Sandra many hotels haven’t a clue what being accessible means you really do have to give the third degree and take a lot of equipment with you. An example of this happened when we wanted to take her to

Brighton where her brother lived. I went into tourist information beforehand and got their list of accessible hotels. One had steps that were supposed to be easy to climb using a walking stick!!!!!!!!

nightjars

Bit late in the day but I really enjoyed reading this. Having a sister with CP its just my walk, my talk, my song. What families have to deal with with a CP loved one is astonishing . We all all have had to make it up as we go along and put up with stuff, whilst folk with miniscule problems shout hell and high water. I personally am so glad to have experienced living with CP in the family. It has made me a better person and it has brought me true love. I would not have changed my sis for the whole world. Talking of toilets , I took Tina once into one on holiday and had to walk miles to get the key. I got her on the loo and shut the door for privacy, only to realise the key was in with her and the door self locked. I was hysterical as Tina was just sort of balanced on the toilet and I had to race back and get another key. When I got back in to her she was laughing so much, no fear at all, she just loved it when things went wrong .