I've been away due to some BAD NEWS

[MÿTicklingStudios]

Some of you may have noticed that I have been away for some time, which has been due to my head being severly messed up.

Here is my story... I am with a girl who I love very dearly, when I met her she already had a young son. When we got serious, I took her son into my home and treat him like my own.

He is now 2 and 1/2 years old. He should be walking and talking etc, but he's not. So I arranged for him to get checked at the hospital and to cut a long story short and after a series of tests etc...

He has been diagnosed with cerebral palsy

I am slowly accepting this fact, but I have many mixed emotions about this and about what is in prospect for me over the coming years. So emotions I feel really guilty about, while others are simply fear.

Is there anybody here that has perhaps been through a similar situation and have learned to adapt and make the best of it? I'd be grateful for some advise from those that are 'thinking out of my box'.

Thanks in advance.

MTS.

 

[kis123]

I met a man when my son (now 20) turned two years old. We got in a relationship and eventually lived together. Six months after we lived together we found out my son was autistic. This is a man already raising a child who wasn't his own, and now this?

Well let me tell you how it turned out. We got married, had a daughter, stayed together for many years and are now not together. How are they? My son still calls him "Dad". We'll be going to court to have his last name legally changed next year. My ex NEVER refers to him as his stepson-he has always called him "son." It wasn't a love fest in the beginning, but has turned out to be a lifelong relationship that outlasted my marriage.

Do you love him? If you love him, deal with your fears and issues and just let it ride. Cerebral palsy is not a life threatening condition. You probably won't be able to play baseball, but he can still give and receive love and affection just like any other human being.

If anything I've just said helps, you're welcome to PM me anytime.

 

[crydun]

I can relate to your situation MTS. I have epilepsy. This scares a lot of people off, especially men. We live in a country full of labels. This is unfortunate because the person doesn't always fit the label. Yes, I am epileptic. I am also a college grad, a Christian and most importantly a human being with feelings. I wish the best for you and your son. I hope the system has changed since I was in school. Is your son in therapy for his condition(By therapy, I mean physical and occupational therapy, not shrinks) The earlier you get your child in, the more they can do with them. I also reccomend that you call the local ADA(Americans with Disabilities) office in your local area way before your child starts school. They can give you a list of options for his/her schooling and inform you of your rights. You will need this later on in life. Anytime you need someone to talk to about this, I'm here for you.

all the best,

crydun

 

[MÿTicklingStudios]

Thanks for your advice. I really appreciate it. At the moment, he is having both physical and speech therapy 3 times per week. Which, in Asia is not cheap and getting the care thats needed not easy at all. I will battle on, I have to, the alternatives are not options my heart can consider.

It helps to know that there are people that understand. I just feel a little bit scared and daunted as I don't take the responsibility lightly. I am due to have my own 1st biological son in december so that is coming too.

God bless you, and thanks for being a supporting ear.

 

[crydun]

no problem, dear. Anytime.

 

[siamese dream]

re:

I used to work in group homes and day programs for developmentally and physically disabled adults, I had quite a few with cerebral palsy that I worked with. They were some of my favorite people to work with, cerebral palsy can be very damaging to motor function, and physical mobility...but the guys and girls I worked with were all very smart, very determined individuals... a girl I worked with couldn't speak clearly and was in a wheelchair because of her cerebral palsy, but she had invented a kind of language of guestures, facial expressions and eye movements, and her parents would send her to the day program with a notebook they'd write in about how she was doing at home or what she had told them she wanted to do during the day. She'd always make sure we knew to read what they wrote, and would give me the biggest grin and enthusiastic nod after I'd read their note and ask her about going out to do whatever she had them write about for the day. Even though she couldn't communicate like most adults, she knew exactly what was going on around her and would make sure you knew what was on her mind, even if it took a few guesses to get it right (which she'd always let you know by smiling and nodding her approval). Another girl I worked with I took to horse riding therapy once a week, she spoke very slowly but was understandable once you got used to her speech, and had to use a walker to get around, but she was always friendly, polite, appreciative when I'd take her out, loved to get up on the horses and the muscle workout she'd get from holding herself up in the saddle and directing the horse with the pressure/direction of her arms and legs worked as physical therapy, improving her leg strength and motor control, but fun at the same time! I've worked with a wide range of different mental and physical disabilities, from very mild to very severe, but even those I had with cerebral palsy with the most limited mobility and speech still seemed to have a great desire to do things for themselves, however small, and they were all generally very happy, friendly people that enjoyed the company of others, especially those that could look past the disability and just have fun with them. A person with cerebral palsy will need some assistance with day-to-day life most likely for their lifetime, but you'd be amazed at the things they can accomplish and learn. The loss of motor function makes even simple grasping or motions a much more difficult ordeal, but it never seemed to stop any of them from working as independently as possible, and they took a lot of pride and happiness in their accomplishments. Cerebral palsy can also differ in severity from person to person, it's hard to say how many physical limitations he will have as he grows older, but I've seen many times in the people I worked with the determination to overcome huge obstacles and most of all, a great enjoyment and appreciation of life. All the best to you, I hope what I said at leat eases your mind a bit.

 

[amk714]

MTS, I'm not familiar with cerebral palsy but as others have posted here, a lot of people with CP are able to adapt and live normal lives. Good luck and I wish you and your family all the best. And thanks to the other TMF members for their inspirational posts. 🙂

 

[MÿTicklingStudios]

Thank you mso much for making this post. It does make me feel better. I guess the unknown aspect in this I am finding very testing to deal with. As he grows older each challlenge will undoubtedly present itself and for that I must be ready, I must stay strong. Even now, more than ever...

I don't know what else to say, only I am truly touched that there are people out there that are prepared to take time out of their day and their life to post well wishes and advise to me.

Again, god bless you, and may god give me the strength to be strong for my family.

I used to work in group homes and day programs for developmentally and physically disabled adults, I had quite a few with cerebral palsy that I worked with. They were some of my favorite people to work with, cerebral palsy can be very damaging to motor function, and physical mobility...but the guys and girls I worked with were all very smart, very determined individuals... a girl I worked with couldn't speak clearly and was in a wheelchair because of her cerebral palsy, but she had invented a kind of language of guestures, facial expressions and eye movements, and her parents would send her to the day program with a notebook they'd write in about how she was doing at home or what she had told them she wanted to do during the day. She'd always make sure we knew to read what they wrote, and would give me the biggest grin and enthusiastic nod after I'd read their note and ask her about going out to do whatever she had them write about for the day. Even though she couldn't communicate like most adults, she knew exactly what was going on around her and would make sure you knew what was on her mind, even if it took a few guesses to get it right (which she'd always let you know by smiling and nodding her approval). Another girl I worked with I took to horse riding therapy once a week, she spoke very slowly but was understandable once you got used to her speech, and had to use a walker to get around, but she was always friendly, polite, appreciative when I'd take her out, loved to get up on the horses and the muscle workout she'd get from holding herself up in the saddle and directing the horse with the pressure/direction of her arms and legs worked as physical therapy, improving her leg strength and motor control, but fun at the same time! I've worked with a wide range of different mental and physical disabilities, from very mild to very severe, but even those I had with cerebral palsy with the most limited mobility and speech still seemed to have a great desire to do things for themselves, however small, and they were all generally very happy, friendly people that enjoyed the company of others, especially those that could look past the disability and just have fun with them. A person with cerebral palsy will need some assistance with day-to-day life most likely for their lifetime, but you'd be amazed at the things they can accomplish and learn. The loss of motor function makes even simple grasping or motions a much more difficult ordeal, but it never seemed to stop any of them from working as independently as possible, and they took a lot of pride and happiness in their accomplishments. Cerebral palsy can also differ in severity from person to person, it's hard to say how many physical limitations he will have as he grows older, but I've seen many times in the people I worked with the determination to overcome huge obstacles and most of all, a great enjoyment and appreciation of life. All the best to you, I hope what I said at leat eases your mind a bit.

 

[TklDuo-Ann]

My nephew has CP. He's now 24. He started showing symptoms when he was around 3. Due to some idiot doctors who'd rather assume than test, he wasn't diagnosed for another 12 years. He'd had a choking incident where he stopped breathing for a couple minutes. The doctors he'd been seeing assumed his symptoms were due to oxygen loss. In fact, they were more due to the seizure disorder that accompanies his particular case of CP. They've done more harm than anything else.

One thing to do is get another opinion to be sure. But, he still has a good chance of living a happy life. It will just be a bit more on you guys to make sure he gets the necessary attention and care. There's lots out there that can help. Some areas are better than others. But, all have programs and facilities available to help out. Be sure to take advantage of them and not try to deal with this on your own. It will be better for you and for him.

You'll all be in my prayers.

Ann

 

[MÿTicklingStudios]

Ann, before I continue, thank you.

Good advice on getting the 2nd opinion, you know... since this has been discovered I have not even got a 2nd opinion. It seems like I've been rushing around trying to get him the care he needs whilst trying to come to terms with it myself, without thinking about 2nd opinions, which are always wise in many parts of life.

I am already trying to think about what help is available to me, and to be honest, other than the support I can get online, there isn't really that much available to me. I live in Asia, so the facilities here are not like you or I would normally get in our respective homelands.

The facilities here seem very expensive and poorly equiped, and when they see me, being a westerner, they seem to add more onto the price. Treatment shouldn't be about price, I just want the best available to him without playing any games. So there is also this that I'm having to deal with which is not easy and very frustrating.

Thanks for letting me release and share this with you. How is your nephews life now? Is he ok? How would you rate his quality of life? Sorry for all the questions....

My nephew has CP. He's now 24. He started showing symptoms when he was around 3. Due to some idiot doctors who'd rather assume than test, he wasn't diagnosed for another 12 years. He'd had a choking incident where he stopped breathing for a couple minutes. The doctors he'd been seeing assumed his symptoms were due to oxygen loss. In fact, they were more due to the seizure disorder that accompanies his particular case of CP. They've done more harm than anything else.

One thing to do is get another opinion to be sure. But, he still has a good chance of living a happy life. It will just be a bit more on you guys to make sure he gets the necessary attention and care. There's lots out there that can help. Some areas are better than others. But, all have programs and facilities available to help out. Be sure to take advantage of them and not try to deal with this on your own. It will be better for you and for him.

You'll all be in my prayers.

Ann

 

[siamese dream]

MTS, your very welcome and I'm glad my post could help a little bit... it does seem to be a more difficult situation to give advice for because of where you live, I have a lot of familiarity with disabilities and government laws/protections of the disabled, but only within the United States. The U.S. has a lot of good laws and programs to help people with disabilities, including financial assistance for special medical needs and assistance with housing/job placement (if the person is able to work) and with finding full-time caregivers to help with day-to-day life. There are state funded facilities that provide this service (with several disabled being together in one large building or group home), and private companies that allow the disabled person to live on their own with the assistance of full or part time care givers. Right now I do tax and worker's comp records for a company thiat provides this type of service, care of mentally and physically disabled persons in their own home. They also fight for disability rights and against funding cuts in government programs like Medicaid, which a lot of the money goes toward people with disabilities to help pay their expenses. The day program I talked about in my first post had some workers whose family either was enrolled in, or worked at the Cerebral Palsy center in Missouri, which was a specialized school for young children with the disorder. These type of programs do have enrollment fees, but government assistance is usually avaliable to a person needing financial help in caring for a daughter or son with a disability.

I really don't know anything at all about the government laws on disability rights in Asia, or what type of assistance and programs are avaliable. If you can find any type of disability government assistance there, I would advise you to get him listed with it...but I'm not sure if the laws protecting the rights of disabled persons are anywhere close to what our laws in the U.S. are. I hope you can find a solution somewhere.

 

[MÿTicklingStudios]

Thanks again for the info. Although where I am there is basically zero assistance available.

It's a question of cold hard cash to get care, and even then it seems to be underpar. If people here have no money to eat, they starve. A similar approach is taken on disabled people. It is left for the families to look after them.

I guess I am one of the lucky ones, as at least I have some money and that option available to me. Others in the same country would have no such luxery.

I am going to continue with the physical and speech therapy and see what comes of it. In the meantime I will continue to look to see if there is better care available here (the physical therapist does no more with him than we do already).

Again, thanks for taking the time to write and offer me guidance on this. Its really appreciated and very heartening.

God bless.

 

[tkl-pen]

My oldest son has cerebral palsy - they said he'd never walk but I got him to walk by the time he was three - they said he'd never talk but I got him again to talk some - he can say things like 'undertaker', 'kane', 'airplane', etc since I found a way to stimulate him - other than that, we have adapted to it - we holiday in Disneyland instead of more adult places, we eat at McDonalds or Burger King instead of fancier restaurants, we attend wrestling when it comes to our city, and we advocate for him instead of taking other people's word. I have had to make sacrifices, of course. I was looking at setting up a professional ambulance system in Manila in 1980 to 1982 - my wife is a Filipina and I am a trained EMT - when my son was born with brain damage in February of 1982 that plan came to a sudden end since there are no real programs or facilities in Manila for him, and what little there was would have to paid for. In Canada, these facilities are available and provided for us. So, one of my greatest dreams in life, my ambulance company in Manila, had to be sacrificed. My son, although mentally challenged, is doing very well and we are very proud of him.

 

[isabeau]

there are various degrees of cerebral palsy. let me give you two examples. my cousin was born with it. as a child he would talk and walk funny and he had therapy. as he grew up it became better. now he is an adult in his forties you barely notice he has it not like when he was a child when i would have trouble understanding him. today he is an ordained minister, happily married with a child who shows no sign of the disease. its a birth misfunction that happens during the birthing process i think. however someone correct me if i'm wrong. he walks just fine he talks great he even went to the site of 911 shortly after it happened by request. the second story is a neighbor that was an adult when i knew him. he has severe difficulty walking but when i knew him a long time ago he was an adult and even though it was terribly difficult for him he would walk up his hill to his workshop everyday and make things. i dont remember what he made but he was very gifted. i dont know if this helps or not but take heart in the fact that my cousin in a sense outgrew his. its barely traceable today. hope this helps

isabeau