My name is Cristina and I am a carer. I look after my 20 old son. His name is Cristobal and he was diagnosed with autism and compulsive behaviour at the age of 3.
A day with Cristobal can go from really good to really bad or the other way around in no time and without any warning. Some days are good, others with lots of changes in his moods and then there are the really bad ones when you need to give more than 100% of yourself to the point of exhaustion and come to realise that you need help and that you can’t live in isolation. You realise that you need people around you that can give a helping and supportive hand and perhaps help you in more practical ways.
Cristobal is highly dependant which means that he needs around the clock supervision 24 hours a day 7 days a week every single day of the year. Therefore my husband and I take turns in the care of our son and need to constantly communicate with each other as to what the other one is doing including going to the bathroom to make sure that Cris is supervised at all times.
Accepting the problem is to recognize that you need help. In order to help my son I had to come to know who I was as a person. I go everywhere with myself, my happiness and sorrows are always with me. My personality, the way I am and everything I stand for never leaves me. I don’t like aggressive people and when I am feeling angry and aggressive I can’t stand myself so I can’t expect the people around me to put up with me and understand me. So started by acknowledging the grief that comes with having a child with a disability, that my tears are normal, that when I am sad is normal, that when I suffer for my son is perfectly normal. What is not normal is trying to live a life that is not mine and try to go around like I have no problems and expect people to feel what I feel about my son; after all he is not theirs.
When I am sad and tired, I call upon the right people so that I can get advice for a temporary solution in terms of looking after Cris. We had to come to terms with the fact that we will always carry the burden in our hearts of looking after a disabled member of our family. It is not something that is going to go away just because the person may live elsewhere so we live the best way that we can with what we have. A good rest always comes in handy so that we can continue with our work but when you do things with a positive attitude and happiness in your heart things seem to improve.
There are services you can go to. At the beginning I didn’t use to use them much Cris was my son and I felt it was my responsibility to look after him alone, but these came a time when I decided I needed to be informed as much as I could.
I realised that having a break would give me the opportunity to relax and live my own life for a few moments without Cris. I use that time to nurture my relationship with my husband as well as for myself. Something that helps me a lot is to pray, I take time out, go to my room and I have a few minutes that I dedicate to prayer, it is something essential in my everyday life. My faith has helped me a great deal and I learned not to place blame for having an autistic child. I came to understand that God was not responsible for sickness and diseases and knowing this gave me a great sense of peace.
¨If they don’t come to me I go to them¨
Regular folk don’t know about the problems that people with disabilities are faced with. They need to be educated about it. I truly believe that if we ask for help from those who are around us, they are
willing to assist, but we need to tell them how to do this. For instance, I wanted my son to be around other people. Therefore I looked for places that were suitable and found Parameadows two years ago. A group of parents get together every second Wednesday of the month and have activities for people with disabilities 18 to 60 years of age. I feel that if doors don’t open we need to fight to have them open. That’s why I spoke to the church. I felt we needed to start a support group for parents, carers, families and friends of people with disabilities. We started last February and we meet the first Friday of the month. For now we are a small group although last meeting there were 21 people there, which filled my heart with joy. Thanks to these meetings, we have had the opportunity to talk, share and interact with people with disabilities about our issues. It has taken a lot for me to take this step and I thank God for making this possible. Seeing someone I love happy and accepted by others, like I see Cris at the meetings, gives me great satisfaction. We need to let others know about us and not hide away in our homes. Our society needs to be made aware of the other side of things and we mustn’t feel guilty or responsible for having children or family members with disabilities. We need to learn to live with it and still have quality of life.
It took a lot for me to go outside the four walls of my home, but it was the best decision I have ever made. I have learned to seek, give and receive help. We love our children and family members who are disabled because they are our own, not because of their disability, but I realised that we are not alone in our grief and when I see other parents suffering and hiding away in their homes, cutting all ties with the rest of the world because they can’t face it, it makes me extremely sad because I don’t think they realise that their lives would probably be easier if they opened their doors and hearts and let it all out. Help doesn’t come to us; we need to look for it but we need to be honest about our needs and recognise our limits. If one door doesn’t open don’t worry. Keep knocking on others until you get what you need. Some people may not respond the way we want to, but we are the ones who need to take the first step.
Our son Cris is not living with us since September 2006.