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Topic : Raising a Special Needs Child

Number of Replies: 715
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Created on : Friday, July 01, 2005, 12:48:15 pm
Author : dataimport
Do you have a child with special needs? Share your advice and support with others raising a challenged child.

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November 17, 2005, 10:23 am CST

Child just DX

My son now age 12 had been dx with general anxity disorder two year ago, last year they added ADD. This year he had started Jr.High School. He suddly seemed to fall apart so serverly, I just place him in a MH day program and they added OCD and ODD.  Last week it was mentioned he was PDD-nos.  I am really concerned and afraid, what more there is to come it seems like so many diffrent DX being thrown around. He seems to have fallen so fast is this normal with this DX? Now he is no longer attending school, the school seemed to just have given up. I am a single mom, his father is getting angry at our son when he acts out.  I feel like I am loosing my son, he had changed so much for the worst. I have seen other who children have these DX. What next?
 
November 20, 2005, 8:44 am CST

Don't Give Up

Quote From: sanders159

My son now age 12 had been dx with general anxity disorder two year ago, last year they added ADD. This year he had started Jr.High School. He suddly seemed to fall apart so serverly, I just place him in a MH day program and they added OCD and ODD.  Last week it was mentioned he was PDD-nos.  I am really concerned and afraid, what more there is to come it seems like so many diffrent DX being thrown around. He seems to have fallen so fast is this normal with this DX? Now he is no longer attending school, the school seemed to just have given up. I am a single mom, his father is getting angry at our son when he acts out.  I feel like I am loosing my son, he had changed so much for the worst. I have seen other who children have these DX. What next?

My son is nine.  I am going through a lot of the same.  No one can tell me whats wrong .  He has been diognosed pdd-nos with an anxiety disorder too.  Now with that I am trying to get him in to a  nueroligist to look at maybe tourettes etc.....  But I am having trouble getting anyone to see him because of the autism dx.  I do have one thing An Awesome school district that did not give up till they found out a system that worked for him.  I encourage you to push them and revise an IEP until you find the right plan that works for him.  I know when my son is haveing difficulty but can't express whats going on he gets worst and I have to dig and ask teachers and aids if they have noticed anything usually I find things out like one kid is teasing him or an aid or teacher is mis intuupring him.  There are therapy's that can help.  Talk to the special ed program at your school to see what they have for autistic children.  Make  sure the teachers understand what he has just because they have a degree doesn't mean they know about autism.  Go in once in a while and see whats going on,  It helps you know what he may be going through.  If you have any mor e questions I would love to help.  This is a hard dx.  Because nos just means they just don't know. Melissa 

  

 
November 22, 2005, 11:40 am CST

Raising a Special Needs Child

Quote From: leona0813

I recently posted a story the other day.  I don't think what you said sounds like what my son has, but he has a genetic syndrome that affects many different aspects of being, from muscular development, to behavioral.  He has chronic ear infections and he also hurts himself often by scratching, hitting his head off the floor, or hitting himself with a toy, or he bites his hands.  I'm not suggesting that this is what your son has, all I'm saying is maybe he has a chromosome problem that makes him behave the way he does.  I wish I could help more.  So I'm just wondering if any genetic testing has been done,  or has it all been just observative? 

Have you tried the homeopathic route yet? We have and now he is doing GREAT!  It was a long har road and we are still doing it, but we had him cleared of all metals and vaccines and we have seen such improvement in school and at home.  It was not cheap to do.  We have paid so far close to $2,000.00 to do this clearing.  But it was well worth it.  I would suggest talking to a homeopath, read all you can. We have also taken him off all preservatives and dyes.  He is  also on an all organic diet.  It is also expensive but well,  worth the results.  I have my child back now, and he is loveing life. 

 
November 22, 2005, 11:43 am CST

Raising a Special Needs Child

Quote From: jb7ctx

I know there are some of you on here who are dealing with an autistic child. Can any of you go to this link here on Dr.Phil and give this mother some advice pertaining to the rights of autistic children? If you will go to: Beyond the Headlines and click on News and current events, then scroll down to the one that says, Autistic child bitten by teachers aid. You have got to read this womans story. Thanks to you that can help her.
An autistic child has the same rights as any disabled child or adult...it falls under the Americans with Disabilities Act.  You have to fight for everything that your child is due.  It is not easy. There are a few agencies that will go with you when you have a meeting with your childs school, to help you with it. they will make sure that your childs school doesn't railroad you. 
 
December 9, 2005, 4:46 pm CST

Raising a Special Needs Child

Quote From: boynemamma

My son is nine.  I am going through a lot of the same.  No one can tell me whats wrong .  He has been diognosed pdd-nos with an anxiety disorder too.  Now with that I am trying to get him in to a  nueroligist to look at maybe tourettes etc.....  But I am having trouble getting anyone to see him because of the autism dx.  I do have one thing An Awesome school district that did not give up till they found out a system that worked for him.  I encourage you to push them and revise an IEP until you find the right plan that works for him.  I know when my son is haveing difficulty but can't express whats going on he gets worst and I have to dig and ask teachers and aids if they have noticed anything usually I find things out like one kid is teasing him or an aid or teacher is mis intuupring him.  There are therapy's that can help.  Talk to the special ed program at your school to see what they have for autistic children.  Make  sure the teachers understand what he has just because they have a degree doesn't mean they know about autism.  Go in once in a while and see whats going on,  It helps you know what he may be going through.  If you have any mor e questions I would love to help.  This is a hard dx.  Because nos just means they just don't know. Melissa 

  

nos just means "not otherwise specified " - or does not have all the characteristics needed  under one type of a specific catogery of disorders. 

  

If you want or feel you need an IEP, put it in writing, the school district must give you one within 10 days of a written request.  

 
December 9, 2005, 5:18 pm CST

schools

 As a special education teacher and both the mother of a daughter with ADD and the guardian of a boy with significant emotional and behavior needs, it never fails to upset me when I hear about schools insisting on kids taking medicines. This concerns me for 2 reasons. First of all, schools can not insist children take medicine, For the most part, they don't even diagnosis conditions which require medication. They can suggest you take your child to a Dr. (Psyciatrist wpuld be the best) and get  proper evaluation and ,if they suggest it , they must pay for it .( must use their Dr.) The other is some conditions are best treated with the help of medicine. Medicine is not a cure, but if properly used, a tool. Not many parents would deny their child seizure medicine if they had a seizure disorder or heart medicine if needed. Why ADD meds, if it is the true diagnosis. All well designed studies show medicine to be the only true effective treatment. for ADHD. (Studies are rated by how effective they are in giving reliable results.) Kids are more likely to self medicine as they get older if not properly treated. The same goes for other conditions.I'm am not saying all kids need medicine, just don't go into a situation without looking at all the facts, My son had no need for medicine, therefore, he took none. 

  

By the way, my daughter is 22 , in college, off medicine , she took it all through  school, and is now completing a degree in social work.. 

  

I'm sure not all school districts are like mine. I am fortunate to work in a district were kids come from. first This attitude is throughout the district from the administration down. We have an active parents group for PDD that is supported by the admin. We have monthly teacher inservices for regular education teachers, a special education director and assistant superintendent who are forever looking to advance both our students and staff skills 

  

.I hope those of you who are looking for the best for your children find help. I know each of you care and will do what you feel is best, None of you would be on a message board if you didn't want what was best for your child. No matter what your child has you, their best advovcate. Some don't have that. 

 
December 10, 2005, 3:21 pm CST

Fetal Alcohol Syndrome

Hi, I'm a stay home Mom raising a son who is almost 13 yrs old. He has been diagnosed with Static Encephalopathy (non-progressive brain dysfunction) ADHD, Epilepsy and Asthma. I'm frustrated about the lack of Medical Professionals who are experienced andknow how to successfully treat our kids with multiple disorders. Fetal Alcohol Syndrome/Effect is a very complex Disorder and is misdiagnosed frequently. Psychiatrists will often refer parents to Residential Treatment Facilities or Psychiatric Hospitals to treat these kids with medication often the wrong ones and with too many different drugs putting them in a Zombie state. We need help spreading the awareness that this is the only 100% preventable Birth Defect. Our children who are born with this Disorder suffer a lifetime of learning disabilities, behavior problems, developmental delays as well as cognitive deficits and poor social skills. Mom's raising these kids love their kids unconditionally and our lives revolve around our kids and the extensive supervision that they need therefore parents don't have normal lives either like having social lives or even breaks away from the kids.We need Dr Phil and other's to do more shows on Kids with Special needs more than any other topic.  tazsmom96
 
December 12, 2005, 6:26 pm CST

5 year old with Bronchomalacia

Hi, dont have much time - busy - busy - busy - but my son is suffering from a very severe case of Bronchomalacia.  We have only recently found this out but he has been in and out of hospital since he was 5 months old and suffered his first cold.  He had previous been thought of as a severe asthmatic as he does have allot of allergies also.  Earlier this year he was also admitted to hospital with a collapsed lung and it has only been since then that he has undergone many different tests and we are now relieved to find out the true cause of the problem.  Bronchomalacia is a collapse of the bronchial tubes inside the lungs.  My sons are totally collapsed so there is no way for him to get rid of any mucous that forms in the lower part of his lungs.  He is only breathing from his right upper lobe with no air getting into his left lung at all. 

  

Our problem is that he now has to undergo therapy morning and night for at LEAST a half an hour CONTINUOSLY,  each time.  This envolves many different breathing excercises as we are trying to hopefully open these tubes so that he can live a fairly normal life.  We have been told to do this every chance we can get before he goes in for another bronchoscomy in 6 months time.  But our son is fighting us all the way with this an no matter how fun we try to make it, or how much we explain that it just HAS to be done he ends up stopping with his arms folded and refuses to do it.  We dont know whether to punnish him if he doesnt do it, reward him if he does (and he never does it for a whole half hour so we dont know really how to reward him anyway).  We are just stuck - we have no idea what to do - and I think this is the main reason why he is refusing as well.  We have always thought of him as the best and sweetest little 5 year old in the world and never had any issues of when or when not to reward or discipline him - but now we truley have no idea what to do.  HELP!!! 

 
December 13, 2005, 6:46 am CST

Hi

Quote From: carmenrita

Hi, dont have much time - busy - busy - busy - but my son is suffering from a very severe case of Bronchomalacia.  We have only recently found this out but he has been in and out of hospital since he was 5 months old and suffered his first cold.  He had previous been thought of as a severe asthmatic as he does have allot of allergies also.  Earlier this year he was also admitted to hospital with a collapsed lung and it has only been since then that he has undergone many different tests and we are now relieved to find out the true cause of the problem.  Bronchomalacia is a collapse of the bronchial tubes inside the lungs.  My sons are totally collapsed so there is no way for him to get rid of any mucous that forms in the lower part of his lungs.  He is only breathing from his right upper lobe with no air getting into his left lung at all. 

  

Our problem is that he now has to undergo therapy morning and night for at LEAST a half an hour CONTINUOSLY,  each time.  This envolves many different breathing excercises as we are trying to hopefully open these tubes so that he can live a fairly normal life.  We have been told to do this every chance we can get before he goes in for another bronchoscomy in 6 months time.  But our son is fighting us all the way with this an no matter how fun we try to make it, or how much we explain that it just HAS to be done he ends up stopping with his arms folded and refuses to do it.  We dont know whether to punnish him if he doesnt do it, reward him if he does (and he never does it for a whole half hour so we dont know really how to reward him anyway).  We are just stuck - we have no idea what to do - and I think this is the main reason why he is refusing as well.  We have always thought of him as the best and sweetest little 5 year old in the world and never had any issues of when or when not to reward or discipline him - but now we truley have no idea what to do.  HELP!!! 

I can relate to your sons needs. When my daughter was about 1 year old, she started having breathing problems. It started out with a cold. She went to the DR. and he sent her to E.R. Come to find out she had Bronchial Asthma. She was put in a croupe tent and had to do breathing treatments. She developed pnemonia in her left lung. From this day forward, she would she go into the hospital twice a year with the same thing. She had allergies. She was allergic to dust mites and grass. We had to remove ALL of our carpet out of our home and replace it with vinyl flooring. We had to put plastic covering over her mattress. The DR. prescribed her a breathing machine to take home for us to use on her during these episodes of Bronchial Asthma. She was prescribed many medicines. She had to go to  a specialist for breathing exercises as well. My daughter, like your son, wouldnt do as I told her and it was a struggle too. But she would listen to others who told her to do what she had to do. Maybe you can get a friend or a neighbor to help you when he has to do these excises and you go to another room and let the friend do this with him. For some reason kids will listen to other grown ups before they do their own parents. (At least mine did anyway). My daughter is now 16 y/o. She has outgrown most of her Asthma attacks. She may have one when the weather changes, but it is not as severe as it was when she was little. I also have a  6 y/o who is insulin dependant. He is diabetic. He has to have shots everyday. Sometimes, 3-4 shots a day. Now I have to struggle with him to get him to take his shots. He too, does the same as your son and refuses to take his shots, so I will tell him in firm voice to get over here and take your shot or I will call the DR. back and tell him you wont do it. I tell him his life is depending on this shot. I had to explain to him the dangers of his disease and how important these shots are. He doesnot want me to call his Dr. so he will take his shot. He isnt as bad about it as he used to be, he is adapting to it. It took him about 8 months to get used to it. It is something "new" in your sons life that he isnt used to doing, so it will take some time for him to get used to it. He will eventually adapt to doing these things, just be patient and keep working with him.  I hope this helped some. I know how you feel. Good luck, and take care.
 
December 13, 2005, 6:45 pm CST

Raising a Special Needs Child

Quote From: jb7ctx

I can relate to your sons needs. When my daughter was about 1 year old, she started having breathing problems. It started out with a cold. She went to the DR. and he sent her to E.R. Come to find out she had Bronchial Asthma. She was put in a croupe tent and had to do breathing treatments. She developed pnemonia in her left lung. From this day forward, she would she go into the hospital twice a year with the same thing. She had allergies. She was allergic to dust mites and grass. We had to remove ALL of our carpet out of our home and replace it with vinyl flooring. We had to put plastic covering over her mattress. The DR. prescribed her a breathing machine to take home for us to use on her during these episodes of Bronchial Asthma. She was prescribed many medicines. She had to go to  a specialist for breathing exercises as well. My daughter, like your son, wouldnt do as I told her and it was a struggle too. But she would listen to others who told her to do what she had to do. Maybe you can get a friend or a neighbor to help you when he has to do these excises and you go to another room and let the friend do this with him. For some reason kids will listen to other grown ups before they do their own parents. (At least mine did anyway). My daughter is now 16 y/o. She has outgrown most of her Asthma attacks. She may have one when the weather changes, but it is not as severe as it was when she was little. I also have a  6 y/o who is insulin dependant. He is diabetic. He has to have shots everyday. Sometimes, 3-4 shots a day. Now I have to struggle with him to get him to take his shots. He too, does the same as your son and refuses to take his shots, so I will tell him in firm voice to get over here and take your shot or I will call the DR. back and tell him you wont do it. I tell him his life is depending on this shot. I had to explain to him the dangers of his disease and how important these shots are. He doesnot want me to call his Dr. so he will take his shot. He isnt as bad about it as he used to be, he is adapting to it. It took him about 8 months to get used to it. It is something "new" in your sons life that he isnt used to doing, so it will take some time for him to get used to it. He will eventually adapt to doing these things, just be patient and keep working with him.  I hope this helped some. I know how you feel. Good luck, and take care.
I just wanted to thankyou for replying.  I have tears in my eyes and feel like someone finally understands.  I'm sorry your son suffers from diabetes but am glad that your daughter is better now that she is older.  We have also had to get rid of all our carpeting as our son has dust, dustmite, cockroach and grass allergies.  I definitely agree that my son does listen to others better than myself when it comes to his excercises and we were originally told, when we were in the city where he was diagnosed, that we would have to visit the hospital daily to do his excercises - but after returning home our local hospital have told us they dont have the staff available and we had to explain to THEM what bronchomalacia was anyway - so we have really been left to fend for ourself.  I cant really expect anyone else to help with his excercises as like I said it requires at least 1/2 an hour morning and afternoon with general excercising like swimming and jumping on the trampoline between.  Its basically just a constant struggle with him these days.  Do you ever reward or punnish your son, or did you do so with your daughter, when it came to doing the excercises?  We really have no idea what to do.  We try to explain that he has to do it, that its important for his health - and without doing it his tubes will remain closed and scar tissue will form and he will be unable to breath without and aid later in life.  But at 5 he just doesnt give a damn - the future doesnt really mean anything to him.  We're really struggling here to know what to do!
 
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