Advice on 4 Yr Old Son W/ Cerebral Palsy

Hi Bertha, I have 2 children who are special needs with neurological conditions. "Cerebral Palsy" is a broad term diagnosis. People with many different specific neurological conditions can be termed "CP". You said he was born with a "bleed in his brain"...does he have seizures? I ask that not only because seizures are common with CP but because I know from experience that some of the anti-convulsants can "seem" to make the hemi-paratic side seem weaker. (Most likeley because of the way it can make a kid feel sluggish. At those times, the impaired side can seem to drag more). Has your son received Occupational Therapy on the left hand? Has there been Physical Therapy for the leg? As all children can present differently in thier degree of impairment, I'm not sure how profound your sons limitations are. One of the things that I've found is that people will sometimes take cues from you as to how to react to or treat your son. When I talked to my sons teachers about his limitations I was very matter of fact. I'd explain that this is my sons life...he can't climb as well as others due to the lack of equal strength in both limbs, that he can't open the milk cartons without assistance, that he won't be able to do things that TYPICALLY DEVELOPED children can do. I further go on to ask the teacher if he or she has ever had their hand or foot fall totally asleep and then tried to use that limb? Most will say yes. I tell them that, for my child, that is the way the impaired side is ALL THE TIME. It really does help the teacher understand. You need to talk to the teachers about how they handle the social part of your sons needs...what do they do if a child or children is making fun of another student? How will they try to integrate your sons handicap as a routine part of their class? Children with special needs can be well adjusted and have high self-esteem. How you react to things that happen concerning your sons limitations will teach your son how to handle those same things when it happens to him when you aren't there. All of our children are different; whether they are typically developed or not, they are all different. Special needs children are SIMPLY DIFFERENT IN A DIFFERENT WAY. I say that to children who do not understand at first. You'd be surprised to see how differently people act once I say that to them. Even the adults who, in my experience, can be worse than children. People are more willing to accept that in which they understand. Therefore, you may have to help them understand. If you do that, when your son sees you doing it, he will learn to handle difficult peers in the same way. If you'd like you are more than welcome to email me. My email is ____@____.com Good luck, D.

hi bertha....wow...i acquired epilepsy due to brain surgery to correct congenital hydrocephalus. I always felt different as well. my seizures are controlled by meds, but if i miss too many doses i have grand mal seizures and i'm not too good at remembering to take them!
how severe is his cerebral palsy and how does it affect him? i'm really sorry that i don't have any real experience or advice except to focus on what he can do and to give him assurance that even if he can't do something perfectly it is trying that matters and makes him good and strong and proud, and that everyone has something they can't do and need help with, and also that if he needs help ask and he'll get it because everyone wants him to succeed. I hope that helps.
love
Amal

Hello Bertha,

My name is Dee. My son has CP. He has had it since birth. He got CP. from having a stroke at birth. My sons left side is also affected. I have been taking my son to Shrine Hospital since he was 10 months old. We lived in Washington, so I had taken my son to the shrine in Portland at first, now since we moved to Nevada, I take him to the Shrine in Sacramento. They have helped my son with so much. If you want more info. on the Shrine, and how to get a sponsor, you can e-mail me. By the way my son will be 16 in two months. A very normal child now.

Dee
____@____.com

Dear Bertha,

You are right about it being a good idea to do things that will boost his confidence in himself.

I really don't think that the school thing is bothering him as much as it bothers you. Kids love each other, despite their wranglings. They are just learning how to socialize, so stuff will happen.

I would say that you know him so well that you can pick out something that he does very well, and build on that. Ask him how does he think that such and such can be done more easily, or can be done at all. Then go ahead and try to do it, letting him take the lead and you helping a little bit and celebrate when it is accomplished.

Then build his confidence as the big brother, saying as your big brother to do such and such for you. Drink of water, or what not. Wash your hands, hold your hand when going down the stairs.I guess that is not a good one. Well you can build on the big brother pride a lot.

Keep involving him in day to day things so that he will gain confidence by doing house hold things, like setting the table, or helping with the younger ones, you get the drift. It will be fun for you and a lot better than worrying all night. That is very harmful to how you do your mothering the next day. Sleep is for refreshment, not worry. Eat a banana if you can't sleep, put on socks or take them off, sip water, and get yourself as cozy as possible, and pray. That is what I do, and it is very hard for older women to sleep. I truly do not think that older men have ANY trouble sleeping. But we do.

Start teaching him to read so that he can gain that advantage. Like, ask him to tell you a story , then write it down, and the two of you sit there and 'read' it together. He will start to recognize words, especially when they are his own. Stuff like that. Good Luck, C. N.

Hey, Bertha B. How are you? Well, first of all, I commend you on the no doubt outstanding job you are doing with your three children. I work for an organizaton the helps clients and families with developmental disabilities. It is called Harbor Regional Center, although there are over 20 regional centers in California. I don't know if you reside in California or not, but there are similar agencies in other states. Anyway, the job of the regional centers is to help families with developmentally disabled members in any way we can. We are advocates for the rights of the disabled. We can advocate for better programs at the school level and find other resources that may aid our clients and their families. We also sponsor support groups and classes for clients such as your son that may center on subjects such as self esteem and confidence. Personally, I work with clients over 40 and am not as familiar with the needs of children as opposed to adults. I hope this helps. There are thousands of families out there just like yours. You are not alone. There are resources available that can assist you and your son with the obstacles that you will encounter during his life, and there are people who care about you and your family even though we do not know you personally. Please look into regional centers if you have not already done so.
Love,
E.

Hi,

I'm new to the group and read your email. I am sorry about your son. It may be that he is noticing he is different and that is a good thing. It's just the first time. You can tell him in a way that he will understand that he has some limitations. I think it might boost his confidence to let him know, from you, that he is loved and liked by those around him no matter what. He could be picking up on your angst also. I'm sure it's hard on you all. Especially being a single mom. Maybe he can do some things really well. It would probably make him feel good to be able to do something that his peers may not do as well.

Good luck to you,

M. Dawson

I am not an expert on Cerebral Palsy, I have worked with adults with disabilities. I just had the thought that maybe if you and your son could explain simply what CP is to his classmates. The kids may be more inclined to be his friend (versus being afraid, because they don't know why he is different) and help him where he needs help. Maybe that will help his confidence to learn that although he is different he is still accepted and can still have friends and be just as special as any other kid in the class. I worked with a guy that had CP while I realise there are degrees of severity. He was living life to the fullest. Show him that he can and help others in his life to be educated and open opportunities for him. My son is 3 and I have the exact same worries, it's a mom thing for sure wether they have disabilities or not.
I wish you the best!