Dec 17 2009
Frustrations of Mild Cerebral Palsy
When our triplets were born at 27 weeks gestation in 1984, the chances of even going to survive. The odds that they can lead a normal life were much less. We lost our son on the 15th due to a rare heart condition, but the two girls survived. Both suffered various problems premature – patent ductus arteriosus (PDA), retinopathy of prematurity (ROP), jaundice, and other between the two. They said they expect one of them (Jessie) to be mentally retarded. We did not expect the other to be later diagnosed with cerebral palsy. She seemed fine until about 2 years old when he started walking on foot and had some problems with his right arm when used for lifting “heavy” objects.
Two years after the diagnosis of cerebral palsy was made. First, the X-rays were taken by a specialist to make sure their hips that were not turned in then a neurologist performed a CT scan and MRI. Alicia began physical therapy (PT) and occupational therapy (OT) at the time was 2 ½ years and was placed in a plastic boot by a pediatric orthopedist in his right leg – the one with the worst pronunciation of foot finger foot. When reminded, she could put the foot flat, but could not bend there. After only one year in OT improved his fine motor skills to be released. I still had the “shakes” when lifting something over a pound with her hand just right. Still, it was a great success in learning to write at the age of only 4. She wore the plastic boot to 6 years and then was released from PT and the specialist. While we are very fortunate that she did not suffer mental problems due to your PC, the “soft” has all the diagnostic problems of its own.
When starting kindergarten, Alicia still had hand tremors and walking on tiptoe, if you forgot to put your feet down. A simple tap on the shoulder reminded him to walk flat-footed. (His teacher was wonderful to help with this.) From another child in her kindergarten class suffered from a worst case of intervention (or unprincipled) of CP was qualified to receive both OT and PT through the school. Professor Alice decided that test to see if I could get it. NO – Alicia was already over “grade in all areas of education so that this prevented him from qualifying for any help. Although it is wonderful to know that his mind was not affected in any way, it is very embarrassing for me students who suffer any physical limitations are not allowed to receive help if you are not affected educationally. This is one of the biggest frustrations for the diagnosis of mild cerebral palsy.
As a father who wants his children to succeed in all they try, it is difficult to see her struggle to brush her long hair herself. It is very difficult to see your food without “reminding” her constantly to close the mouth during chewing, (this is not in bad taste that literally can not seem to do) or to have more bite, please! She can pour a cup of tea or water if the pitcher is almost complete – it’s too heavy for her. She has no real coordination in physical education at school, but it is and that’s all that counts so far. She has made great progress, although in one area – he plays clarinet in the band and worked so hard that the chair moved from 12 to 2 this year. This to me is a great achievement! It requires great skill of his fingers.
The diagnosis of mild CP are difficult to live with his son when he “seems” normal for most people. Teachers and friends wonder why she is not able to do many physical tasks and tasks that education does. This is where self-esteem is damaged! It’s been a struggle at times to ensure that everyone is “coordinated” anyway. For years he hated and hated that she was to “get CP. After years of remembering that she is a wonderful person, no matter what, she’s finally become a safe and happy boy.
However, I wonder what is in front of her as she grows. What other simple tasks will be difficult for her? Since she is “normal” in all other areas how people expect me to do “normally?” These are some reasons why the diagnosis of mild cerebral palsy is so frustrating. We hope to be able to do all things, and she can not. But since her mental capacity is not affected, we tend to forget that it has its limitations. It’s so hard not to expect her to be “perfect” in everything he does since he is so good in their schooling. (She had the highest academic average in the 7th grade class last year, what more could you ask for?)
I have to remind myself every day how lucky we are with the two girls. The prognosis was not promising when they were discharged from the NICU. We are very blessed to have two very happy, healthy girls, and is an added advantage that both are successful in school.
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