My son, My story (part one)
Hi, my son was diagnoised with CP when he was 14 months old and i would like to tell you his story. he is 26 now. He was 8 weeks premature and his slow development was put down to him being premature. I was already the mother of a 18month old daughter and if i had not already had a baby would have probably accepted this and left it.When i changed his nappy his legs did not flop apart like a normal childs but stayed straight and stiff like a board, he wasnt sitting, would go ridgid in my arms whilst screaming for hours on end. Even my husband wouldn't acknoledge there was something wrong. But I knew something wasn't right and made a nuisence of myself and was eventually told by my consultant that she would send me to the child develpoment centre where they would probably do some phisio with him to help his development, and that he would eventually catch up. I remember the day as if it were yesterday, i took my mother in law with me as she didn't believe anything was wrong either. We had only been there 10 minutes when the lady who had been watching him play whilst i was answering questions to another lady,turned to me and said "you do know your son is Spastic don't you and he will never play football for leeds united or be able to ride a bike (the list went on) I sat there, too stunned to speak, tears silently running down my face, my mother in law was sat open mouthed also unable to speak. The lady ccouldn't have said anything worse to me if she'd tried, It wasn't that she had told me he was spatic but that we were a football mad family, with my husband playing for our local team twice a week and us all being big Leeds fans. What was i going to tell my husband? How was i going to tell him? The rest of the session was a blurr, them making regular sessions for him to attend, a phisio/therapist was allocated to us who would do home visits etc. We drove home in silence, When I told my husband he didn't want to believe it and stormed out, I found out later he had gone for a walk and ended up watching the junior footballers playing whilst sat crying, finding it all so hard to take in. I will continue with my story in part two.
Hi maria, I have read lots from you on here about your son Tom. My son jack is 20months now and has dystonic cp in all four limits. He has good head and trunk control but can't use his arms although he does try so hard to reach out for toys. I'm just wondering how your son is now is he sitting, rolling ? Jack can sit but just falls if I leave him for to long (has no saving reflexes) he does try to roll if I use a toy to encourage him. Like Tom I don't think he has been effected apart from physically, although he is very slow compared to children his age.
Hope to hear from u soon Steph x
Hi
I have just read your story so far and your experiences resonate with me so much. My son Tom is still only little (22 months) and was 8 weeks prem. We didn't know he has spastic cp until he was 11 months after months and months and months of screaming, discomfort, total full body stiffness, lack of eye contact, fisted hands, splayed toes, terrible startle reflex etc. We had his twin sister to compare with, plus the experience of our older daughter, to make us realise very early on that something wasnt right but we had NO idea what it was and all the professionals we took him too led us to believe that Tom just had colic. When we found out it was cp we were (and I guess still are) devastated. Mt husband is a really keen cyclist and I know that he felt sad that Tom wouldn't be able to cycle out with him or know the feeling of freedom you get screaming down a hill on a bike but I guess we just adjusted after a while to our new reality. To be honest, I think my husband adjusted better than I did - hubby kept saying that we didn't know how his life was going to be anyway, that we don't know with any of our kids but I just felt so sad that Tom had clearly been robbed of the ability to do stuff that his sisters just take for granted. Everyhting is so unknown - that's what is so hard - they just keep telling us that 'time will tell'. I think that Tom is cognitively unaffected by his cp and that his problems are purely physical but they affect his whole body so he couldnt be classed as 'mild' by any stretch of the imagination.
I look forward to hearing the next part of your story and hope that maybe I can learn something!
Thanks for sharing.
Maria x