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Topic : Raising a Special Needs Child

Number of Replies: 715
New Messages This Week: 0
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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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August 9, 2007, 4:56 pm CDT

Masturbation by Down's Syndrome Child

My 8 year old niece has Down's Syndrome and she has recently begun to masturbate constantly.  As much as her mother has tried to stop her, she goes back to that behavior.  She has tried to distract her with different activities and this has not worked.  She is at her wits end.  The activity is constant.  Can you please give my sister advice to help stop this behavior.
 
August 21, 2007, 5:54 pm CDT

Information on ADHD

I have an 8 year old son who was diagnosed with ADHD, and ODD when he was 5 years old. I'm a single mom with Larsen Syndrome who is in a wheelchair raising him all alone.  Of course with the help of local services.  I had been seeing a therapist since he was 5 years old to help me cope with my own personal problems when she pointed out to me about a program called CHADD.  Its an organization that helps families deal with a family member or themselves who have ADD/HD.  Below are links of websites that will be of help to people who have ADD/HD.  There are also support groups, meetings, and feedback on any questions or concerns that you may have about the condition.  In addition to CHADD, I have been trying my hardest to work with my son's teachers and principle by making a 504 plan.  Which is a goal to help my son with his behavioral problems and ways to take action in certain situations.  While being a member with CHADD, I joined a group on yahoo.com support group for CHADD members. In being in this group, I recieve weekly emails on updates and information.  One day in reading this email, I came across an article about another parent that was updating her child's 504 plan..... In it, she needed idea's on what kind of accomodations that needed to be put on the 504 plan to help her child... In the same email, there was a response to it, and it stated that there is a website to go to, to list what kind of accomodations an ADHD/ODD child needs.... I have found it to be very insightful, and rewarding.  Below are the list of websites to go to if you need anymore information.. I hope this helps out.

 

 

 

 

CHADD website-  http://www.chadd.org/AM/CustomPages/home/CHADD_Home.htm?CFID=4734740&CFTOKEN=53129161&jsessionid=f2302964191187742796500

 

504 plan for children with ADHD/ODD website- http://atto.buffalo.edu/registered/ATBasics/Foundation/Laws/AccomList.pdf

Also recommended to teachers.

 

Concord Special Education Parent Advisory Commitee-http://www.concordspedpac.org/

 

The Federation for Children with Special Needs-http://fcsn.org/index.php

 
August 26, 2007, 10:03 pm CDT

Kids with DS

Quote From: susied00

My 8 year old niece has Down's Syndrome and she has recently begun to masturbate constantly.  As much as her mother has tried to stop her, she goes back to that behavior.  She has tried to distract her with different activities and this has not worked.  She is at her wits end.  The activity is constant.  Can you please give my sister advice to help stop this behavior.

I have a 9 year old daughter with Down Syndrome and have also had to face this problem. At first I was very angry and upset about her masturbating but then got advice from my daughter's early ed teacher who suggested that I tell her that if she want to do this behaviour she must go in her room, repeat it over and over and eventually she got the idea. Now she does is hardly ever as she is a real peoples person and doesn't like being in her room alone therefor it has stopped.  It is a natural thing for kids with DS to do this at this age so please tell your sister DON'T get angry or upset with her just reinforce the fact she can do it but ONLY in her room.

Hope this helps.

 
August 30, 2007, 7:33 pm CDT

Deaf & Blind Triplets

Living in Australia we are behind in the Dr Phil shows. Just aired yesterday was the show about the deaf and blind triplets. I just want to say that I found the mother absolutely amazing and awe inspiring. Her selflessness and the love she displays for these children is beyond beautiful. Her incredible husband is just that ... incredible and they both should be very very very proud of themselves and as Dr Phil said, I am humbled in their presence. I hope life treats them well.
 
September 11, 2007, 5:35 am CDT

Children & ADD

I watched a rerun the other day on Dr. Phil about children out of control. I was so stunned by some of the things I heard an saw that I had to post my view on it.  Let me give a little insight as to why. My son is now 25yrs old. Great young man, works 2 jobs, went 2yrs of college. He has a good life, he is having fun. He has not always been a good kid, you would never know now at 25 that he was such a awful child. When our son was about 2 he became so unruly we would not even go out to eat. We never had a sitter, no one would watch him he was so bad. He was out of control. By the time he started school, nothing had changed with him, I was called on a regular basis from school, always in trouble. He couldn't sit still, he had tantrums, just awful, I was wondering at that time what we did wrong,(spoiled to much or what). He got into 2nd grade an things got really bad, got called to the school for meeting an was told by his 2nd grade teacher that he was ADD/Hyper an needed to be put on medication.  I did not agree with her an of course she got mad. I do think that Doctors an Teachers are so quick to say kids are ADD these days, its the easy way, it is an assumption thats the problem due to behavior. Of course a parent never wants to think there is something wrong with there child. Finally after a couple weeks of notes from the teacher of him being in trouble daily my husband an I finally took him to his Doctor to be checked out. Told the Doc what the teacher thought. The Doc said, he is a normal boy, don't worry about it. Nothing changed after that, I think his teacher was mad because of the Doc's diagnosis. To me she took things out on him more,an expected more of him. At the end of the school year  all the kids got there reports to bring home, I was totally shocked at what the teacher wrote on the back in the comment area. She said, my son had major psychological problems that needed attended to. I was so shocked by this that I called the school to speak with the principle. Of course he told me she should have never put that on there an he would speak to her about it. Nothing ever got done about it an the bad thing is that stayed on his record. So you can imagine what the years ahead were. BAD, he was labeled. My husband an I took him to a psychologist during the summer just to verify to us there was no problem an of course we were told he was not ADD. I finally deceided to do some research myself to see if I could find an answer to his unruly behavior, he couldn't sit still, he threw things, he had tantrums, just awful. I went to our local library an started researching, I came across food allergies an behaviors. Very interesting to me. I started changing his diet. I made his lunch everyday an sent to school. Natural peanut butter, celery,carrots, I bought at the health food store candies, Carob choc. (M&M'S), no artifical coloring or flavoring of any kind, no more soda(unless it was a clear soda an that was on occasion, no sugar, no ketcup or mayo(there were receipes in the books telling you how to make it tho) It was a difficult thing to do but we tried it for 1mo. an you would not believe the different child I had. Everyone commented on his behavior an ask what we had done to change him.  One day at school he fell an hurt his ankle an had to take him to ER for x-ray, I picked him up an he was off the wall, I knew right then, he ate something he should not have. The Doc knew it to, the Doc asked him what in the world is wrong with you today, my son said I traded my carrots for cheetos at lunch. We kept him on this program of foods for approx. a yr or so. He finally outgrew what ever it was that affected his little brain when he ate all that junk.  OK, so now back to the beginning, when I saw that show an Dr. Lawson said that sometimes food allergies, I was stunned because I had been saying that for years an no one believed me. Then about 2-3 days later I saw on the new where they were linking artifical favors an colors to food allergies, again stunned. I found all this info out 25yrs ago. I have alot of friends who put there children on ritalin or other meds, to me thats the easy way out, its the easy way for the teacher an the parent.(sorry parents, I know your not going to like that) but its true. It is very hard an a little more costly to eat this way but believe me the outcome is worth it. Try it for a month before you put your child on any meds, go to the library, there are alot of books telling you this an giving examples of foods for them to eat. I know how hard it is but PLEASE,PLEASE do  your research before meds.In alot of cases meds are not the answer just an easy way out. I know there will be alot of people that won't agree with me but if you take a little time to research it you might. It was all worth it for my son an that was 25yrs ago an no meds.
 
November 2, 2007, 11:43 pm CDT

So relieved to know that someone else is going through the same ordeal as my son and I

Quote From: kimmery

Dear Deb, 

  

I could, and have written pages and pages, about how I can relate to the sheer frustration of dealing with an Aspie.  In fact it is now something like 5 a.m. and I have been on this puter since about midnite typing and reading msg boards and websites on Aspergers and High Functioning Autism.   

  

My son is so bad that he is now on a waiting list for Residential Housing. 

  

Well, as I said it is now 5 in the morn and I am pooped. So, I do know how you feel.   I have found a GREAT support group on a msg board Aspergers Syndrome on AOL.  If you have it.  I mean they are awesome.  There isn't any live ones around me so it was nice to find these ladies, they are super. 

  

Kimmery 

Kimmery,

I have a 9 year old son  that  has been diagonsed (this time) as suffering from Tourette's Disorder and severe ADHD and life is progressively getting worse, so much so that his therapist and psychiatrist are suggesting a residential treatment facility as well. They seem to think that his behavior may lead to a more severe and dibilitating disorder in the future (he has been admitted to a couple of different psychiatric facilities in the past and has had multiple diagnoses...I am beyond frustrated). The problem is I am so torn by wanting to do what is best for him, what is best for the other members of the family including his 4 year old sister and the fear of the unknown as far as the treatment facility. Also, there is not a residential treatment facility anywhere near us, the closest being about 3 or more hours away; but things are getting so bad here at home and school that I am not sure I have many options in order to do what's best for all involved.
What have you decided about a residential facility on your end?

I am so sorry that you are also having to consider this difficult decision, but am relieved to see that I am not alone.

Amy
 
November 3, 2007, 1:08 am CDT

Wow..reading your post was like looking in a mirror

Quote From: carolk65

 My 15 yr old son was diagnosed at age 9.
He has Aspergers, ADHD, Bi-polar/schizoaffective disroders.
With bi-polar he presents with paranoia and hallucinations.He not on see's these hallucinations, but feels them, smells, tastes.He is the most wonderful child when not in a bi-polar state.He is polite, loving, fun, caring...but when he gets into a bi-polar state it is all we can do to handle him anymore.He was recently admitted for 72 hrs to a mental ward for attacking his father.He had been arguing and decided that his father was going to attack and rape him.So he attacked first.
We had to have the police here and case workers to calm him down and get him admitted.After the episodes he remembers little if any of it.Once he has a hallucination or paranoia, there will be no convincing him that it isn't real...even yrs later he will believe it with all of his heart.
He  fits in socially with children that are half his age, (due to aspergers) he has no clue how to fit in with his own peers.He is so unconcerned with silly details such as remembering  his best friends name.It just never occurs to him that he should know something like that.
It's been hell raising my oldest son, there are days when I want to run away and give it up.Sometimes I see no future for him at all and other days I see one just filled with anquish ...
They say my son is a rare bird in his variety of disorders, I wish they would just see him as a child in need.HIs meds are helping him, but at the same time we fear the things these strong meds are doing to his body and mind.It's a no win situation.He is on disability since he was 9,so at least the meds that cost 1500-2000 a mnth are covered.

My younger son age 10 was born at 5 1/2 mnths gestation and has cerebral palsy and aspergers.
After all these yrs of caring for our two special needs boys, we feel like we have aged 100 yrs.The heartache drains your life, your marriage,  every aspect of our lives have been  taken over by these needs our children have, but we learn to celebrate the smallest of things, knowing that tomorrow may not bring such laughter and smiles.
I posted another comment earlier about my son being referred to a residential treatment facility.
When I read your post I knew I had to write back because I relate to this like you would not believe.

My son who is nine first started having signs of Tourettes Disorder at around the age of 6 and things have only gone downhill since then. My son's therapist and doctors also say that the multiple disorders my son is suffering from is pretty rare and honestly are at a loss at how to go about treating him. He has throughout the years been diagnosed with Tourette's Disorder, severe ADHD, Bi polar disorder, OCD etc etc...now they are thinking "just" Tourette's and severe ADHD; but recently said that he is showing signs of early onset schizophrenia.
When he was about 1 1/2 years old he would steal knives out of a cabinet and stab up the furniture in our home, he would have violent outbursts that would last hours. At 6 he developed motor and verbal tics, around this time he would occasionally say he heard voices or saw things that were not there. He has a horrible memory and like your son, has trouble remembering things like his own friends names. He cannot keep friends and thinks that people who are mean to him are his friends..like he can't distinguish between the two. He will call anyone his "best friend" even total strangers.
 He has issues with compulsive lying, even when he will do something right in front of me he will lie about doing it. He has problems with compulsive stealing (mostly with food) so bad that at night we have had to lock up all the cabinets and put a lockable box in the refrigerator to keep our cold stuff from getting stolen and taken to his bedroom to gorge himself on.
 Out of the blue he has started acting out in an almost sexual nature...even though I have never allowed my children to watch movies or programs that would remotely contain anything of that nature. I caught him drawing a very accurate picture of a woman's breast and at a different time making what seemed to me sexual type noises.... he has for some reason started trying to kiss everyone and has had complaints from other children's parents about this at school. He has always had boundary issues such as standing too close, wanting to touch the person he's talking to and overtalking like you wouldnt believe. He drew a picture again the other day of what he called a "trap" and it looked pretty sinister. When I asked him about it he said he was wanted to build this thing to "trap" his "friends"  as payback. Out of nowhere last week after watching a particularly sad movie he came out and said that he wanted to cut himself with a knife.
My husband and I along with our 4 yr old daughter have begun sleeping in our room with the door shut and locked almost out of fear. I hate to isolate him from us and us from him...I don't want to make him feel unloved but I can't risk him acting out around his sister.
It seems like every few months he will pick up new bizarre behaviors and other ones will be left by the wayside for awhile, he seems to be angry every day for no apparent reason. I feel like I am in way over my head here and am not equipped to deal with behavior of this magnitude, and so often feel like giving up and running away (as if I could). I can only imagine what is going to happen once his hormones kick in and he starts getting bigger and stronger.
He has been in and out of psychiatric hospitals but he is very smart and knows exactly what the doctors want to hear so that he can come home, and within minutes of leaving the hospital it's back to the same old stuff. So now I am faced with possibly of putting him in a residential home for up to a year possibly. I don't really know what other options I have left. I love my son more than he can even comprehend, but I find that everyday as soon as he enters the room the air almost changes and I find it harder and harder to even spend time with him...

My apologies for writing such a long post, but reading all these other posts kind of opened the floodgates.

If anyone can relate...please drop a line!
 
November 30, 2007, 1:52 pm CST

Childhood headbanging and Brain Damage

When My son was a baby he would rock in his crib so hard, he would bang his head aginst the crib and wall-He Broke 3 cribs and 2 toddler beds doing this.  He Is now 14 yrs old and since he  was a baby I have had behaviroal issues with him-The older he gets the  worse its gets. He still rocks,however does not display signs of autsim other than the  rocking.  I have always believed that he  suffers from brain damage from headbanging. Every person he has ever gone or been testing with has always dismissed me when I have expressed my concerns.   His main behavioral issues are impluse control,not following direction and viloent outbust. This has been going on since he was a baby. The older he gets the worse he gets. He has been in 2 boys,Inpaitient Psy hospital,and in and out of counslers. At current he has been made a ward of the court for Domestic assult and battery on me,he has spent time  in Juvie for that and is now awaiting his punishment. And with all that he still does not get it. The dots just dont connect for him- Something in his brain is not making the connection. I have been raking my brain wondering why this kid is so out of control and these outburst at the drop of a hat and why its always been like this . Why has he never made the connection,why does he have this impluse control problem. I keep coming back to the  possiblity of brain damange,More specificly "Frontal and or Temporal Lobe brain damage
"Which is  the part of the brain that control behavior.   Id there is anyone out there that might have any answers for me I  would love to hear them. Im so angry with him for his behavior that i cant stand to be around him, But I wonder if it is brain damage then he is not a nutcase, and if Im wrong and just simply he a troubled kid then what,Juvie,boys home , what? What is the  answer.Anyone please help. Im at the end of my rope.

 

 
December 17, 2007, 3:51 am CST

Thanks 4 your tears over the years

Quote From: baw1415

My heart goes out to everyone out there with a special needs child. 

  

I have 1 son , who is 17 years old.  He was diagnosed with atypical sutism at  age 3.  We had a hard time with his education.  Our school system didn[t know where to put him.  I wanted him to be  in a regular class eith an educational assistant.  By grade 2, the other children noticed he was different and  he was alone most of the time.  After going to special needs classes, they changed the school every year.  He was in 5 schools by grade 6.  There was no consistency, and behaviour was getting worse. 

  

My husband and I separated when my son was 1.  Being a single mother, as my son  got bigger and stronger, he got more physical.  He got stronger and I got weaker.  My ex husband and I share custody, that has been a tremendous help to me.   I  became the weekend parent when my son punched me in the nose.  He was 13 and I had told him we couldn't have pizza for supper.  As a mother to that child, it just broke my heart.  Today my ex and I still share custody of our son.  I don't know if I could have survived 7 days a week. 

  

My son has been in a great school with a wonderful teacher.  He is in grade 12, but will be in school  there until he is 21.  I don't know where he will work after that.  His outbursts, or"blows" as I call them don't happen often.  But when they do, they are bad.  We are trying hard to avoid the triggers that will set him off.  As his doctor pointed out, hitting out at a parent is safe, unconditional love and all. 

  

To make matters worse, he is now diabetic and must give himself injections for the rest of his life. 

  

IPeople really don't understand, and many shy away from a family with a special needs child.   

  

Has anyone ever heard the quote "God gives special children to special parents".  I have repeated that through tears over the years. 

  

Thank you for this bulletin board.  II will be back. 

 We have truely been blessed with our little angels. Only another parent understands how emotionally draining it can be to care for a child with Autism. We also get to experience thing with our little angels that is so humbeling and rewarding in ways that not just anybody would understand or appreciate. This is why God gave you a special son, because he knew that it would only take you looking at your son jumping over daily obsticals and sometimes stumbling and even falling to say if he can press on another then so can I. You must of done something pretty impressive for God to give you the honnor to raise, mold/hold, and love him in this life! CONGRADULATIONS! Now enjoy your blessing and continue to help others see theirs. Thanks for passing on your special story an keep on passing it in tears for lots more years, that is absolutly a perfect discription of a perfect emotion. Keep your head up and SMILE!  BRYTONEDBYASD aka Jami
 
January 7, 2008, 7:32 pm CST

special needs child

I have a dauhter who has special needs due to shaken Baby Syndrome. She lost 63% of her brain and suffers from immune defeciency, growth hormone defeciency, hemaplegia, developmental delays, and breathing issues. She is 17 months old. I think the hardest thing for me personally is making time for my other daughter, and the not knowing what the future holds for her. Will I ever see her walk down the eisle? Will she ever live on her own? Who will take care of her when I am gone? It's impossible to me that anyone can love her like I can and not see a disabled child but the child that snuggles with me and dances to disco.

Jessica

 
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