| Name: chikiki | Date: Oct 9th, 2009 9:13 PM |
| Hey Lisa, my name is chikiki and I have a 7 year daughter with CP. When she was yonger she wasn't able to sit up or crawl either. She started to sit up at the age of 3 years. Now she's 7 and she's has a worker she wears afo's and she also have a wheel chair. To me it seems like the older she gets the worse it gets for me all because I don't have transportation for or wheel chair. And it's hard to find people or charities to help someone like me. I am a 30 year old mother doing the best I can for my little girl with the resorces have. I just know somewhere in our future thing have got to get better. If not will still praise GOD and live my life how I am know. Take care. MY email address in [email protected] ↑ |
| Name: cinda | Date: Oct 16th, 2009 9:58 PM |
hello my name is cinda. my son is 6 years old with cerebral palsy, hearing loss,adhd, high rish of epilepsy. He was delayed in motor skills as well. He didnt walk until he was 2 years old. for the longest time we practed with a medical walker. He is walking ( with sure steps )- braces on his feet. he just cant climb or run all that well.
when he was a baby he used to arch, and needes positioned in certain ways, had hard time sleeping, he sat before he rolled...
my youngest son is 6 months old and was born with digeorege syndrome, heart defect, effects your growth, learing, your hearing, bones...he had heart surgery at 2 months old.
You have to tell your self that your baby is so special in so many ways. God gives special babies to good parents...
i was only 15 years old when i had my oldest, his father was and still it a dead beat..after a while life gets a little easier, when you see your baby smile knowing she is happy means the world..
if you would like to talk my myspace is
http://www.myspace.com/cindalong ↑ |
| Name: Lucinta | Date: Dec 18th, 2009 10:36 AM |
| Name: Lynnette | Date: Dec 22nd, 2009 2:31 AM |
| needing support I have a six year old son with CP ↑ |
| Name: gazal | Date: Dec 25th, 2009 9:55 AM |
| Hay mums please join the group delayed darlings at site baby centre.com you will all get much more information there ↑ |
| Name: the person who smiles the most | Date: Feb 7th, 2010 1:16 AM |
| Hey lisa i am a 21 yr old mom with a 5 yr old daughter who has cp i was told she would never walk she would never talk i learned that that was so far of she has been in intesive theapy from the age of 9mo still to this day my child who wasnt supposed to walk walk now and even run yes it did take her a little longer that what dr want to call normal kids but the point iz she got there it wasnt tell abou 2 1/2 and the talking just came recantly you cant jus lay and cry or give up you have to push be strong and fight with love and work your son will get to were he needs to be i was once in your boat ↑ |
| Name: Irfan Ali | Date: Apr 1st, 2010 8:53 PM |
| iam a physiotherapy graduate from jinnah postdraduate medical center karach and student og Postraduation from Liaquat national school of physiotherapy so i want to be the member of this forum and and want to learm more about cerebral palsy thanx ↑ |
| Name: kate | Date: May 7th, 2010 4:08 AM |
| Hi my name is Kate and I have a 3year old son, Tagen, with cerebral palsy. He was born at 31 weeks and stayed in the NICU for 3 weeks. I noticed early on that it took him much longer to do things than a "typically developing child". I don't know about you guys, but I hate the word "normal"!! He has been doing PT, OT, and Speech since he was about 1, but was not officaly diagnosed with cp until about a month ago. I knew in my heart that he had cp, but with a normal MRI I was hopeful that maybe it was just developmenal delays and he would catch up. Tagen has ataxic cp. He is walking but he has terrible balance and falls a lot. He does not talk, but I am hopeful that now that he is walking the language will start to come. He has come so far and I am very proud of him. He also has some sensory issues. He starts pre-school in August and I am very nervous because he is an only child and not use to be away from me for very long. His sensory stuff makes him bite a lot and he likes to pull his hair out and pull it through his lips. I am desperate to chat with some moms that can relate with me. You just can't understand until you have a child with cp. I would love to hear from some of you about your children and what your lives are like. ↑ |
| Name: vinh | Date: May 31st, 2010 8:55 PM |
| Name: mystery :) | Date: Jun 17th, 2010 8:18 PM |
hi im mystery( thats not my real name just for cyber protection) i recomend you read the book out of my mind by sharon chreech.... this may not seem like such a goood idea but if you look into it more you will probably be able to understand your daughter more
-mystery ↑ |
| Name: a concerned aunt | Date: Jun 27th, 2010 6:14 AM |
| hi there, im an aunt to my 13 mth old nephew, who was born 2mth prem, the placenta had a abrupted and an emergany c section was preformed, he was very poorly n wa sin intensive care 4 a month. i read my sisters hospital notes and come across a big medical word which i googled, and 2 my shock, i read an artical saying tht babys who survive the birth are more than likely 2 develop cerable palsy. i told her right away and she freaked out at me... i havnt mentioned it since. but approaching his 1st bday, my concerns grew as he was still unable to sit up unaided. so i took another look on the net, and was finding that he is showing a lot of the symptoms i.e..... he cant sit up unaided, he tends 2 wobble his head a lot, he has peg teeth, he drags himself across the floor on his belly. he is 13mth now and nothings changed. i am really worried as my sister or her partner has not said a thing about this. i have a feeling shes known frm the beginning and maybe she just doesnt want to come to terms with it. for the 1st 7mth she was very depressed, i helped out a lot. now i think this to be the reason 4 that. she even thought 1 night he was having a seizure, she didint raise an alarm, just told us the next day and didnt show any real concern. i just want to help and be there for them but ive waited a year for her to tell me and it upsets me the fact she feels she cant tell me, and i really dont know how to approach th situation... please could somebody help?? ↑ |
| Name: R | Date: Jun 27th, 2010 5:12 PM |
| hi lisa, i completely understand what you are feeling. it is so hard to accept this news of your child. i have an older son, perfectly normal and then i have a younger son who suffers from polymicrogyria - he is also 20months and cannot talk, walk, crawl. He just started sitting up by himself a few months ago. I keep comparing both boys and feel so depressed about my situation. i feel so sorry for my older son because he won't have a normal little brother to play with like everyone else does. it is so hard. i keep trying to stay positive but there are days when i am at my breaking point and all i want to do is cry and cry for fear of the future and how he will turn out. but try and stay strong - we are given these special children for a reason and one day we will be able to understand God's plan for us. ↑ |
| Name: Lifeofthedifferentlyabled Blog | Date: Jul 6th, 2010 4:14 PM |
hi everyone I am a young woman with cerebral palsy who has been blogging about her life and thought I would pass along my blog link i hope it helps to know josh isn't alone and neither are you this is a link to a popular post put you can see the whole thing by clicking on home
http://lifeofthedifferentlyab
led.wordpress.com/2010/02/10/visual
-perception-hiding-behind-the-chair
/
↑ |
| Name: Carolyn Wilson | Date: Jul 19th, 2010 1:51 AM |
| Lisa, I just read your post and I know exactly where you are coming from. I am 49 and am raising my 2 grand babies, the youngest is now 10 months old, he was 6 weeks premature and was born with hydrops non immune, and they are saying that he has a mild case of cerebral palsy! He cannot crawl or sit up, is still trying to get control of his neck, if you want to talk shoot me an e-mail [email protected] ↑ |
| Name: Jacob Smith | Date: Jul 26th, 2010 3:23 AM |
| Don't worry, I was born with cerebrial palsy, i'm 16, it hasn't affected my life, if you take your son to the therapist or doc, they can help, some doctors are a**h***s so ask for a second opinion, thats what my mom did, look how i turned ou, hey i'm gonna be able to walk in a year, trust me, he'll be ok ↑ |
| Name: Mark D. Dunn | Date: Oct 3rd, 2010 3:04 AM |
Lisa:
Idon't know how you feel, but you should do everything you can to give your handicapped child the best opportunity of having a normal, and successful life as possible without neglecting your other children. I'm sure they have enough love for him as anyone else, and there is no reason you should show the same amout of love. My e-maiil address is [email protected], and yes I also have cp. ↑ |
| Name: Jordan | Date: Nov 19th, 2010 5:04 AM |
| My name is Jordan. I am an Elementary Education major at the University of North Alabama. I am in my senior year taking the first part of the class called Introduction to Students with Disabilities. One of my assignments is to chat with parents of a disabled child. I understand that this is a place for parents to talk and share advice for dealing with their situation. If any of you are willing to share some of the struggles of raising a child with a disability, I would be grateful to hear some of your stories. It takes a good heart to raise a special needs child and I admire all of you posting in this forum. Any reply would be greatly appreciated. Thank you. ↑ |
| Name: Ann Moss | Date: Nov 30th, 2010 9:21 AM |
| My son is almost 31 years old - he was also born with cerebral palsy but wasn't diagnosed until he was 1 year old. He was my first born so I had nothing to compare him too, although I did keep taking him to my GP as he was so stiff and rolled his eyes for a few seconds at a time. I also have a daughter aged 27 years who was an amazing addition to our family.. My son was 3 years old when she was born and she taught him lots of normal everyday things that I wouldn't have thought of. Dereck, my son, cannot sit without support - him limbs are not functioning as they should be, he can say about 20 words but understands everything that is happening. He is a character of great determination but I have to admit that life is not always easy. ↑ |
| Name: mitch | Date: Jan 29th, 2011 1:20 AM |
| I'm 20yrs old and suffer from cp im studying at uni and i do most things usual guys do at my age, all i had was the ambition and motive to find my own way around things, its a battle everyday to be graceful and keep my dignity, but i will always try 110%, i wish you and your kid the best for the future ↑ |
| Name: titahibabe | Date: Feb 1st, 2011 9:16 AM |
| Hi Lisa. My 18 year old queen has CP, Epilepsy and what they call 'mild retardation' and she rocks! She has been through all types of surgery, rehabilitation, the list is endless. Wheelchairs, commodes, crutches, splints, metal pins, medication, probably much like your little soldier. We have worked with what seem like hundreds of professionals to ensure my daughter is given what she is entitled too. At the end of the day, this world is just not ready for her! We try to live by the words "the only disability is a bad attitude". Take it slowly and try to change how you ‘family’ him; try not to compare him to anyone else. Just look at what you all have been through and come out of! Amazing! Lisa, I still struggle with my feelings of guilt, sadness, fear, frustration, anger, ambivalence… these are all natural emotions but my body works fine – it is my queen that has too launch herself into this unforgiving world everyday, just like your solider will. Allow your suicidal thoughts to come and go, because suicide is a choice; choice is something that your son didn’t have at birth. I wont wish you good luck because luck has nothing to do with it; your sheer determination and courage does. Go well Lisa – things are just getting started! ↑ |
| Name: Mayi | Date: Feb 2nd, 2011 2:15 PM |
| Hola, my name is Mayi. I also have a 3 yr old daughter with CP. Well, thats what they say... She has been genetically tested various times but CP is the only answer so far. My daughter suffers with sporadic jerks, hypotonia, developmental delay and worse of all seizures. I have gotten used to all the other conditions except the seizures. She loses consciousness and stops breathing. I have an 11yr old healthy daughter with honors in school and it is extremely difficult because I find myself asking what did I do wrong with my second? I do sometimes feel like I cannot handle this task I was given and can regrettably say I have thought of passing on the responsibility to my older sister. The thing is Lisa, those thoughts come and go but I what keeps me going is the love. My daughter is so loving, wants to hug all the time and even with her condition, she loves to dance and do everything every one else is doing.... even if she cant. With assistance she walks, tries to run but constantly stumbles. Has many bruises, scars and bumps but she is determined... if she has that ability to move on with her life with her condition, then I know I can too... and so can you! ↑ |
| Name: Laura | Date: Mar 8th, 2011 6:07 PM |
Hi, my son has a mild case of CP in his right arm...his fingers are always clenched and he barely moves that arm....My son was born full term with no complications during pregnancy or birth and he was born with the CP plus Hydrocephalus, diabetes insipidus (deals with your sodium), cerebral atrophy (loss of mass in brain due to the HC) and optic nerve hyperplasia, he also suffers seizures due to all this!! He had to have two brain surgeries withing the first 4 months of his life to place a shunt in his head.
I also have a teenager who is perfectly normal, so it is very hard to deal with and come to grips with....you have to go thru a grieving process and let go of the guilt....this isnt your fault!! Trust me I still have all those feelings from time to time....
My son is now 18 months old and doesnt roll over, crawl, sit up unassisted or anything...He can sit up for a little while in my lap if I get him balanced or put him in his high chair, he will only play with 2 toys and both have to hang from a floor gym and play music...he use to kick his legs like crazy and for the past few weeks he hasnt and he cries when I try to do any kind of exercises with him. He also has his days and nights confused so he sleeps all day and is awake all night which we have been dealing with since day one!
He has PT once a month as I live in such a rural area thats all I can do, the rest I do at home myself. My hopes and my dreams are for him to be able to walk and talk...(we swear he is trying to say ma ma and da da right now), but I honestly dont know if he ever will......
It is VERY hard when you see other children his age or younger doing these things and it cuts your heart like a knife.
As my mother tells me you can't look at where he is you have to look at how far he's come!!! And its true...I have a beautiful happy healthy son whos smile can light up any room or anyones day!!!!
When you have nurses that saw him before and see him now and they tell you...."when he got airlifted to the childrens hospital we all stood around and said there's not much hope for that one" and drs tell you that you'll be in hospital every other month or week the first yr and he DEFIES those odds!!!!.....
It takes a special person to care for children like this...even after nearly 2 yrs I still find myself asking "WHY"...but then my son smiles at me and it doesnt matter any more....
Just know that you are not alone out there ↑ |
| Name: becca | Date: Oct 31st, 2011 5:01 PM |
| I am fourteen years old and have spastic quadriplegia which leaves me with limited movement of my arms and legs. I know how hard it is to watch others do the things I can't, you don't feel 'normal' . Try to think of the stuff your son can do instead ↑ |
| Name: dominick | Date: May 24th, 2012 11:57 AM |
| wow i was looking at what you wrote and it looks like i could have wrote it my self...I know exactly what your going through' as my son has cerabal palsey himself......it is not easy . but you know this already ....and it is a long, hard road.......but you will find alot of joys with your son or daughter..its very hard to write advice being im on a 1 way conversation....but heres my email [email protected]..... write me....your new friend dom ↑ |
| Name: heather stewart | Date: Jun 6th, 2012 4:18 PM |
| Name: Tealeaf | Date: Jul 15th, 2012 1:58 AM |
CHECK IT OUT!
http://enabled2fightny.weebly.com
This is a new website that is dedicated to special needs children.
Spread the word. ↑ |
| Name: Caroline | Date: Jul 18th, 2012 10:09 AM |
My daughter was born 9 weeks premmie and she had many challenges. She needed extra care and attention as it was looking like she would be wheel chair bound at age 2. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.
We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some products from a particular company, she started taking them in her yogurt, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!
It’s now 14 years later and my daughter still enjoys these special products. She wrote her own resume a few weeks ago, got 2 x job interviews in one week and started her first casual job after school 2 weeks ago in a fast-paced food takeaway in our local shopping mall. She is now saving to go to Europe and buy her own home when she finishes college. She will begin her driving lessons in about 6 weeks. Her self-esteem is through the roof! I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I.
My email is [email protected] ↑ |
| Name: Caroline | Date: Jul 19th, 2012 11:00 AM |
My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.
We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt. After one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!
I am so grateful to the person that told me about this incredible technology. It’s now over 14 yrs later and she continues to take these special nutrients, she has attended normal public schools, she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway. She is now saving to go to Europe and buy her own home when she finishes college. She will begin her driving lessons in about 2 weeks. Her self-esteem is through the roof!
I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. I have been greatly blessed with this & wish to help others. For more information: [email protected] ↑ |
| Name: Anna Riley | Date: Jan 22nd, 2013 7:36 PM |
| Hello my name is Anna I am also 28 years old and I would be more then willing to talk to you. My email address is [email protected]. I am in the hospital with my son also Joshua who is turning 4 this month and he has cerebral palsy. I woul love to talk with you. I undestand the pain, I really do ↑ |
| Name: Tammy | Date: Aug 29th, 2013 8:31 PM |
| I am a mother of a child who has cerebral palsy who's is almost 13 years old. I have managed until now without any other support from fellow cerebral palsy parents but find I am struggling now, any advice? ↑ |
| Name: margie | Date: Oct 10th, 2013 9:42 PM |
| You need to stay strong for your other two children, the rest will work it's way out. ↑ |
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