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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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October 5, 2005, 10:47 pm CDT

Raising a Special Needs Child

Quote From: tammyo1973

I forgot to add that a lot of bipolar children are misdiagnosed with ADHD or similar illnesses. 

Tammy 

Pick up a book called the out of sync child and see if it hits home, it did for me and my son was aggressive as well when he was not getting what he needed.
 
October 6, 2005, 1:12 pm CDT

I hear you

Quote From: cathyjul

My son is 11 and I am glad to say that so far this school year is 1000 times better than the last. Last year was like being on a roller coster that would not stop. He had issues at school with the teacher, other kids, you name it. He was constantly worried about what others were thinking and his way of dealing with failure was just not to try. I heard all the heart breaking quotes,,, no one likes me, I have no friends, I'm stupid to wishing he was dead. I had gone to physicains because of attention issues at school and base on questionaires completed by teachers and my husband and I, we were told he had ADHD. He was put on dexidrine 1 dose each AM and it worked for grade 3, 4 and part of 5. As he grew they increased the dose as we experienced decreases in effectiveness. Anothre issue I had was my son was extreamely pick about food, and a very poor eater. In grade 5 when it was suggested by his Dr to give him an afternoon dose I refused because dexidrine can affect appetite and I couldn t imagine him eating less. In addition to food he has always been picky about clothing, socks, shoes... the list goes on and once something set him off, he would have major meltdowns.  

  

Without an increase in meds things just got worse and worse at school and we were referred to a specialist. With this referral the peices of the puzzel all fell in place. He was determined to have sensory intregraiton disfunction. Its treated by an Occupational Thearapist and has made such a difference in our lives. Drs are took quick to say everything is ADD or ADHD - I just want others to know that this is real and everything is not ADD or ADHD - challenge the Drs - they are only people. My son is doing so much better getting the right physical actitivity for his disability (meds alone were not the only solution)  

My son is autistic and has big sensory problems.  I have most success with occupational therapy and play therapy and social stories.  He is on one med to help him sleep.  He is nine and is really doing better with out the side affects of meds he has been learning to deal with his issues.  It has helped him so much and helped others around him too.
 
October 6, 2005, 6:47 pm CDT

Daughter with Short-bowel Syndrome, etc.

My daughter was born at 27 weeks (almost 6 yrs. old now) and has short-bowel syndrome due to losing much of her small and large intestine to NEC (necrotizing enterocolitis).  She also has mild chronic lung disease and is mildly mentally handicapped with a communication disorder.  She has a malabsorption problem because of the short-bowel syndrome and takes meds everyday to slow down everything moving through her intestine so she can absorb more nutrients.  She also takes zyrtec, as the doctors suspect allergies, but haven't tested for any at this time.  Because of the lung disease, she usually gets breathing treatments whenever she gets a respitory infection.  School-time is very hard on her medically.  She gets sick very easily and usually lasts much longer.  Stomach bugs are a very big problem for her also.  The first time she got a stomach bug she was hospitalized within half a day from the start of it due to dehydration.  This past spring she had either 3 stomach bugs in a month's time, or the same one just wouldn't let go of her.  Am always looking for others going through anything similar. 

Thanks for listening, 

Heather 

   

 
October 7, 2005, 5:38 pm CDT

Personal

 I have ADD myself. I wasn't officially diagnosed until very, very recently, but it was apparent from the start that there was something wrong with me. It didn't affect my ability to learn, sure, but I've always thought that when a child is different in someway, you try not to treat them too differently because of it. It's what my mother did, and I'm very grateful to her because of it. You should never lock your child away from the world as to keep them out of trouble, or else they will never be able to grow and start a new life when they get older. At the same time, you shouldn't just give them everything or ignore their differences: you do need to draw some lines, but sometimes it might be necessary to once or twice cross the line and allow the child to take a risk or two. They should live as a normal child, making friends, learning and messing up at their own pace.
 
October 8, 2005, 12:39 pm CDT

A newbie

Hello! 

  

My son lives in Illinois with my ex husband, he is telling me a lot of things that I am very concerned about.  They are telling me that he has ADHD, a learning disability, bipolar, autism (which from the description I have been getting is Aspergers, and even schizophrenia.  Can a five year old really HAVE all this?  Or could he just have Aspergers and all the syptoms they are basing these diagnoses on, come from that?  They are saying that my son will have to be put in a home... to which I say "Not until I get the chance to care for him!"  If you all have any insight into this please let me know. 

  

Thanks!
Kara 

 
October 11, 2005, 10:24 am CDT

step chilsd=PDD

Quote From: boynemamma

To all of you who are raising children on the autism spctrum, 

  

         I have tears in my eyes. Reading the boards that there are others out there  that have the same struggles. I have a six year old daughter with aspergers and a nine year old son with a major anxiety disorder learning disabilities and pdd.  MY husband is in the National Guard and is gone a lot.  Every day is a struggle.  From IEPs to fits my children may through because they are upset because of sensory issues or lack of being able to communicate.  To all thoughs perants who struggle with IEPs and getting the right help in school I do ahve one bit of advice ..KNOW YOUR RIGHTS!!!!!!!!......  Have a good relationship with the school dont stop till you find the right place.  My husband gave up a job so that we could live in the right school system he now makes a 1/4 of what he did before.  I believe with my whole heart it was worth it.   It helps me to read other perants struggles to know I am not alone.  I have been BEGGING Dr. Phils crew to do a show on this to find some research that helps pearants.  Poeple dont understand waht it takes to raise these kids and the HUGE HUGE struggle to get the right help for them.  I live in Michigan there is only one hospitol and nueroligy department that will see my kids My son is in desperate need of nuero testing I belive from his birth he has major frontal loab damage .  We can not get an appointment till late summer of 2006.  It is so sad to me I just feel like screaming why doesn't any one care!!!!!  Help me!! But no one wants to touch it because it is autism and there is little expierence in it.  Please if any one has any suggestions for navigating the medical fields please help.  For that matter if any one has any suggesting on raising children with these disorders it would be a great help to me Thank You,   Missy 

  My husband and I are in the same situation.I noticed that his son had some problems just before he was 3.I pointed them out to him,and he went to the ex and voiced his concerns.They replied that he'd gorw out of it or he'll be fine.He's just behind.I was having a conversation with a client of mine one day,and the subject came up.I didn't realize at the time she worked in child development.They called and asked if they could see him? It was so far the best thing that has happened.We are now at a roadblock.He's 7 and having problems in his after school care.He was almost kicked out of that program.They have no idea how to handle him.We think that he should have occupational therapy,but atv v$200 a session we can't do it.The school system will not help.Now his mother wants to move 2 counties away.That county doesn't have the resources of the one he's in now,and I think it will be worse.Besides the fact that his father won't be able to keep up with even close to what  he does now.I would LOVE DR.Phil to do a story on parents issues with PDD Aspergers,and Rhetts.It is a huge chaalenge just for school.Let alone when we go somewhere and get's into a mood.HELP!!!!!
 
October 12, 2005, 1:07 pm CDT

Easing Your Mind

Quote From: karamorrow

Hello! 

  

My son lives in Illinois with my ex husband, he is telling me a lot of things that I am very concerned about.  They are telling me that he has ADHD, a learning disability, bipolar, autism (which from the description I have been getting is Aspergers, and even schizophrenia.  Can a five year old really HAVE all this?  Or could he just have Aspergers and all the syptoms they are basing these diagnoses on, come from that?  They are saying that my son will have to be put in a home... to which I say "Not until I get the chance to care for him!"  If you all have any insight into this please let me know. 

  

Thanks!
Kara 

I am sorry you are having so many problems getting your son correctly diagnosed and I completely understand your pain and frustration. The longer your son goes undiagnosed, the more time you lose in getting the intervention he needs, if he is indeed Asperger's. 

  

It is generally not uncommon for an Aspie to have a comorbid, but to have several is highly unlikely. My daughter has AS with comorbid ADHD. HOWEVER, many symptoms of other disorders may present in Asperger's and be misdiagnosed by someone who is unfamiliar with AS. I would suggest your ask your ex to take your son to a neuropsychologist or neuropsychiatrist and ASK whoever it is if they have qualitative experience with autism spectrum disorders. 

  

My daughter has had symptoms since the age of two, followed by a very frustrating 8 years of doctor after doctor after psychologist, all of whom said nothing was wrong with her. Then, 2003 brought several misdiagnoses. It was only in September of this year that she was accurately diagnosed and I am still trying to get interventions in place while doing what I can at home to help her. 

  

If you have any questions about where you might take your son, go to the OASIS website and make a post. One of the girls can get you information on specialists in the state in which your son resides. 

  

I have to go pick my daughter up from school. I will check the board later to see if you have questions. 

 
October 12, 2005, 1:51 pm CDT

To finish...

Quote From: sdauback

I am sorry you are having so many problems getting your son correctly diagnosed and I completely understand your pain and frustration. The longer your son goes undiagnosed, the more time you lose in getting the intervention he needs, if he is indeed Asperger's. 

  

It is generally not uncommon for an Aspie to have a comorbid, but to have several is highly unlikely. My daughter has AS with comorbid ADHD. HOWEVER, many symptoms of other disorders may present in Asperger's and be misdiagnosed by someone who is unfamiliar with AS. I would suggest your ask your ex to take your son to a neuropsychologist or neuropsychiatrist and ASK whoever it is if they have qualitative experience with autism spectrum disorders. 

  

My daughter has had symptoms since the age of two, followed by a very frustrating 8 years of doctor after doctor after psychologist, all of whom said nothing was wrong with her. Then, 2003 brought several misdiagnoses. It was only in September of this year that she was accurately diagnosed and I am still trying to get interventions in place while doing what I can at home to help her. 

  

If you have any questions about where you might take your son, go to the OASIS website and make a post. One of the girls can get you information on specialists in the state in which your son resides. 

  

I have to go pick my daughter up from school. I will check the board later to see if you have questions. 

Another piece of information that might be useful is that 99.9% of children suffering from Asperger's have social skills problems, or what language/speech therapists call "pragmatics". If you believe your son may suffer from Asperger's, have him tested by a speech/language therapist in PRAGMATICS. This test is more in depth than the average language/speech test given to children and, unfortunately, many AS children can pass the lesser speech tests so they slip through the cracks. It is usually the pragmatics where the AS is "proven" or tossed as a possible diagnosis. Social skills deficits are the most common symptom of all AS children from the research studies I have seen. The DSM-IV R(I think) has a list of criterion that children must meet to be "Aspie's". Be careful of shrinks who are specialists in one area of the learning disabilities (such as ADHD, bipolar, schizophrenic, etc.) because that is what your child will have. If you can locate a university close to your son that has a psychology department that does developmental disabilities' studies, that might be a good place to start. 

  

One thing to remember is that not all AS children suffer the same symptoms/behaviors and severity is also a question. My daughter does not have the severity of other children with AS. I will tell you about a few of my daughter's but your son may or may not have other symptoms that are AS that my daughter does not have.  

  

Other symptoms you might inquire about are motor tics. For instance, my daughter will put the thumb and middle finger of her left hand together and move her left hand back and forth spasmodically and become visually fixated on that hand while jerking her body spasmodically. Another motor tic is when she rises on her tip-toes, paces back and forth in a straight line, rocking her body spasmodically and, again, becomes visually fixated on it. 

  

My daughter is very concrete in her thinking. She often does not understand idioms. A funnier one is the day I was speaking to another adult about doing something she feared and I said "Sometimes you have to kick the dog that bit you." (This is a fairly common idiom in Arkansas, maybe the south.) My daughter was absolutely horrified and asked me why I would kick a dog. I then had to explain to her what I meant. Sarcasm is often lost on her when it is used by other people. Oddly enough, she gets most of my sarcasm because I tend to be a very sarcastic person. 

  

She has "meltdowns" or "tantrums" if she encounters a situation that overstimulates one or more of her senses. She is hypersensitive with smell. She cannot play video games or play for extended periods of time physically because she becomes overstimulated and loses control of herself. She has accidentally hurt other children before (and me) when this happens. But to tell her to sit down for a while WILL bring on a meltdown. When she is in the middle of a meltdown, I have learned to not try to reason with her because it only makes it worse. She has already been sensorily overstimulated and more stimulation makes it worse. I just get her and leave wherever we are, no matter what. She cannot calm down until I remove her from the situation. 

  

My daughter talks constantly. And I mean literally. She is very detail-oriented, often giving me details that are completely irrelevant to the main point of the story, but if I interrupt her, she often has to start over. She frequently speaks in a monotone voice and still cannot grasp what a whisper is. I am a big picture person and details such as what color clothing a person was wearing or hairstyle often escapes me and I begin tuning out the chatter. But, most of the time amidst all of that detail, my daughter is actually getting around to telling me something I need to know. So, I have had to retrain myself to NOT tune her out when she launches into one of the "detail" stories. For instance, one day she began a commentary on her day at school by telling me about a little boy who got in trouble on the playground, what he had done, what he was wearing, where the duty teacher made him sit, etc. and then finally got around to the fact that two teens from the high school had been taking my daughter's entire class of the playground at lunch and NONE of the duty teachers knew until that day...four weeks AFTER they first began leaving the playground with the teens. 

  

She has no clue about personal space and stands too close to people when she talks to them. Well, actually she talks AT them. My daughter cannot read non-verbal clues and will talk about her latest fascination to anyone who will listen without allowing the other person to get a word in edgewise (this is called perseverative). 

  

I have talked to mothers of sons with AS and sometimes children with AS will react violently, they will climb about, shout, have angry outbursts in school and other situations and any attempt to calm them results in the same reaction as my daughter...it only escalates the situation. 

  

Hope this helps some. Don't forget the OASIS website for Asperger's. Angie can probably get you the names and phone numbers of people to call for help. 

  

SD 

  

 
October 12, 2005, 2:21 pm CDT

Possible help

Quote From: lisa1017

  My husband and I are in the same situation.I noticed that his son had some problems just before he was 3.I pointed them out to him,and he went to the ex and voiced his concerns.They replied that he'd gorw out of it or he'll be fine.He's just behind.I was having a conversation with a client of mine one day,and the subject came up.I didn't realize at the time she worked in child development.They called and asked if they could see him? It was so far the best thing that has happened.We are now at a roadblock.He's 7 and having problems in his after school care.He was almost kicked out of that program.They have no idea how to handle him.We think that he should have occupational therapy,but atv v$200 a session we can't do it.The school system will not help.Now his mother wants to move 2 counties away.That county doesn't have the resources of the one he's in now,and I think it will be worse.Besides the fact that his father won't be able to keep up with even close to what  he does now.I would LOVE DR.Phil to do a story on parents issues with PDD Aspergers,and Rhetts.It is a huge chaalenge just for school.Let alone when we go somewhere and get's into a mood.HELP!!!!!

I hate that your children have, or may have, Asperger's Syndrome, but it is nice to know that other parents out there understand they day-to-day struggle raising a child with a disorder. I am a single/divorced mom and have raised my daughter by myself (with the exception of a very brief interim marriage) for 10 years. 

  

After all the hassle I have had with this school for 5 years over my daughter, I have returned to school to pursue a degree as a School Psychology Specialist with an emphasis in autism/asperger's. If you can't beat them, join them. I can't change them from out here, so I will get on the inside and work from the inside out to bring awareness to at least one school district about this disorder. 

  

Because our children look so normal, many people just assume they are "bad" kids or have behavioral problems when they don't. I just wish someone, somewhere in this country would raise public awareness of this disorder so our children do not suffer so much.  

  

My daughter had such a difficult time last year, even with her teacher, that I pulled her from school the last two weeks and wrote a six page letter to the school principal and assistant principal letting them know that they had egregiously violated my daughter's civil rights (I also named specific teachers' names in the letter who had mistreated my child) and I was calling my state's attorney general, the state Department of Ed. and DHS. I was amazed at how quickly they were calling me, wanting me to come to the school to talk things over and get an IEP in place for my daughter that should have been there in 2003, even with the incorrect diagnosis. There is, of course, background info I haven't listed here. The point is, I let them know in no uncertain terms exactly what they had done and that I was not putting up with it. They had allowed my daughter to be bullied all year, even by the teacher, and then when she got fed up and struck back, they saw her because she wasn't as crafty as her tormentors, who kept their behavior under the radar. As a result, I was called to the school because the assistant principal threatened to expel her. When I found out what had really been happening, that is when I pulled her from school, wrote the letter and called the agencies. 

  

DO NOT LET THEM RUN OVER YOU. Schools will threaten and try their best to intimidate you into doing what they want, and they usually get away with it. Human nature is human nature: Intimidation works for them, so they keep doing it. Find out what your child's rights are (look at IDEA and FAPE and whatever state provisions you may have) and put it in writing to the school that you are not going to be quiet and they are not going to get away with unconscionable violations of your child's rights.  

  

Be careful in choosing your battles, though. If it isn't really worth fussing about, don't. When you become the mother who is at the school every day complaining about something, they will not take you as seriously. It is like the "nagging wife" syndrome and gets you nowhere fast and certainly doesn't help your child. 

  

BTW, check out the OASIS website, if you haven't already. It is a great online support for AS parents specifically and you can pick up some great information from the parents. 

  

Wish all of you the best! 

SD 

 
October 13, 2005, 4:39 pm CDT

You must get an IEP or waht

Quote From: lisa1017

  My husband and I are in the same situation.I noticed that his son had some problems just before he was 3.I pointed them out to him,and he went to the ex and voiced his concerns.They replied that he'd gorw out of it or he'll be fine.He's just behind.I was having a conversation with a client of mine one day,and the subject came up.I didn't realize at the time she worked in child development.They called and asked if they could see him? It was so far the best thing that has happened.We are now at a roadblock.He's 7 and having problems in his after school care.He was almost kicked out of that program.They have no idea how to handle him.We think that he should have occupational therapy,but atv v$200 a session we can't do it.The school system will not help.Now his mother wants to move 2 counties away.That county doesn't have the resources of the one he's in now,and I think it will be worse.Besides the fact that his father won't be able to keep up with even close to what  he does now.I would LOVE DR.Phil to do a story on parents issues with PDD Aspergers,and Rhetts.It is a huge chaalenge just for school.Let alone when we go somewhere and get's into a mood.HELP!!!!!

I am so sorry for your situation. It is really had raising these kids and to raise them as a step child relationship well I bow to you.  Frist of all I would ask for a new evaluation at his school.  I don't know what kind of costudy you have but I am pretty sure either perant can ask for a new evaluation because it is obvious that what they are doing with him at school is not working.  The school legally has to give him a new evaluation.  Then you can tell them that you are not stopping until they include the OC in his curriculum.  And if the mother moves away I would frist get some legal help there.  There may be a way to keep him in your area.  Please PLease read the perants rights you can get one at any school office.  Also you can usually request a perant advocate.  The school usually doesnt like to make it known they are available but they are.  Have them help navigate your system.   

       I would also look up what is known as play thereapy I have been to seminars where they taught it because it is so expensive to actually have a play therapist.  I had Dr. Richard Solomon He was wonderful he use to have a website I dont know if he does any more.  This has helped my kids more then anything.   

       If I had to hear Oh they will grow out of it one more time I swear I was the one who was going to through the tantrem.  Find a good doctor dont stop till you find one that will help.  Write any time I would be happy to help it gives me encouragement if I can help some one going through this.  I pray for the day when they can give us ansewers to why all these beautiful children have to go through this but I will tell you this the faster you get the right help the better things will get.  It will be night and day difference.  I challenge you to really find out what makes him tick what his limits are and where he can be pushed to do better and where he needs time.  Thank you I will be thinking about you Missy 

 
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