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Topic : Raising a Special Needs Child

Number of Replies: 715
New Messages This Week: 0
Last Reply On:
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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September 30, 2005, 1:16 pm CDT

this is new

  

  well this is new!! I hve three kids one has Autisium pdd one has adhd it think it might be someting else im taking him in soon and my oldest has a medical disabilty.She ;had rsv when she was thre an unusuall age for it but it happened.She lost part of her lugs to it she is at 60 percant lung cupacty.So she has to be very careful around sick people if she get sick it makes her very ill and had sent her to the hospotal.So i have my hands full all the time. It is not easy being a mom of three kids with different disabilties.I have cahllenges on a daily baisis that would make a normal mom crazy.This is a nice place to have so moms can get together and chat about our childerens problems and get some kind of relf knowing we ar not the only one out thier.I well be back her soon. 

 
September 30, 2005, 1:19 pm CDT

this is new

  

  well this is new!! I hve three kids one has Autisium pdd one has adhd it think it might be someting else im taking him in soon and my oldest has a medical disabilty.She ;had rsv when she was thre an unusuall age for it but it happened.She lost part of her lugs to it she is at 60 percant lung cupacty.So she has to be very careful around sick people if she get sick it makes her very ill and had sent her to the hospotal.So i have my hands full all the time. It is not easy being a mom of three kids with different disabilties.I have cahllenges on a daily baisis that would make a normal mom crazy.This is a nice place to have so moms can get together and chat about our childerens problems and get some kind of relf knowing we ar not the only one out thier.I well be back her soon. 

 
September 30, 2005, 1:36 pm CDT

I have one with pdd

Quote From: kuntrygal

I have been referred to a developmental specialist for my son, who I am told has features of asperger's.  Any advice? My son will be 7 in a few weeks, and it may be Febuary before the specialist can see him. 

  

Karen 

  

    

  

    You can rserch it on the net.plasase do that.talk to the doctor.get early intervention for him the early the better.If he is put on any drugs please reserch them you can do that.do this before you give them to him.if you do not agree with the docto about drugs or what must be done for him speck up.You must do what is best for your son and yourself i know you will not agree with every thing the doctor or others say reserch and become very knowlagable about your sons needs.you are the one to make the desions.You are his advicate.reserch early intervention.and make sure if you chose meds you know egzacly what they are and there sideffcts and vbenifits.You will know if the diagnosis is a the right one be reading about it. 

 
September 30, 2005, 7:25 pm CDT

ADHD and medicines...

My 5 year old  son just got "diagnosed" with ADHD and we are looking at going the medication route. I am totally confused as to what i want to do...Everybody has told me that he is not ADHD and that it is just a behavioral thing, but i want to believe that his doctor knows what is best for him. Any advice from anyone who is or has been in this situation, i need advice... The medication that he is being put on is FOCALIN XR. 
 
October 3, 2005, 5:59 pm CDT

peranting two autistic children

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 

 
October 3, 2005, 6:04 pm CDT

ask the school system

Quote From: mommy21600

My 5 year old  son just got "diagnosed" with ADHD and we are looking at going the medication route. I am totally confused as to what i want to do...Everybody has told me that he is not ADHD and that it is just a behavioral thing, but i want to believe that his doctor knows what is best for him. Any advice from anyone who is or has been in this situation, i need advice... The medication that he is being put on is FOCALIN XR. 
My daughter was diognosed with aspergers at three.  Right away I did research.  I found Play therapy was most helpful.  Sometimes you can ask for an IEP from your school system even if they are not yet in school.  This prepares the way and may open a way to get speech and other threapys because they add up fast.  Please look into plsy therapy.  The University  of Michigan website has info on it.  I hope all goes well, Missy
 
October 5, 2005, 10:19 am CDT

A school policy

  

    My son has been indetetion three times this year not because he has done anything bad.He does have an iep.my middle child.It has been because the school has come up with a new policy.It goes this way you have to be in your class room 5 min. before class starts thier are no bells to worn the kids.if you aren't you are put in after school detention every time for three hours it really adds up.My son has had many.In one class he has been reported for being 30 sec. to 1min.This is their oplicy many kids are being sent to after school detiontion this year becasue of O.M. S. school policy.I was told you cant' be even 1sec late for class it is in ziolation of the late policy.no eceptions.But when I questioned the p if he holds his teachers up to the same standereds he shut up.I know from personal experince that they are not on time when i hopl iep meeting they are ussuallytlate or do not show up at all.They sighn it later.I do not feel this is a unfair policy it is to strick I do belive kids need to be on time for school but a policy such as this will make kids and parents think twice about sending kids if they are late just to know they are foing to be spending time in detention for walking into class 1sec late. My son is so afraid to be late he wont sleep at night and has become so anal that he spends time seting and checking his things so he is not late and does not eat lunch so he wont be late from lunch. even with that he was late 1sec to class and has a three hour detention after school tomarrow.am i the only one who thinks this has gone to far?I am thinking about redoing his iep so this is not an isue does anyone  have anyideas of how I should write it so that this is not a problem any more. 

 
October 5, 2005, 11:22 am CDT

spina bifida and prader willi

  

I'm mom to four, one being a 10 yr old with spina bifida and prader willi. While she has gone way far beyond what Dr's said she would ever do, it's still a lot of work being her mom. She's catheterized three times a day, wears goodnites as she has no bowel control, and she is non-verbal. Well, she has about a dozen words she uses.  I am homeschooling her as I was spending more time and energy fighting the school than I had for my children.  I decided to put that time and energy into her and it's paying off in big ways.  I need to find some respite care though.  She's a happy little girl most of the time, but it's like having a young child around forever.  We have to keep the fridge locked, the food up high or locked, electronics out of reach, etc.  A toddler who may never learn "don't touch" when no one is looking. 

  

I love her dearly but I'm burning out.   

 
October 5, 2005, 1:30 pm CDT

KNow the law

Quote From: debrasatt

  

    My son has been indetetion three times this year not because he has done anything bad.He does have an iep.my middle child.It has been because the school has come up with a new policy.It goes this way you have to be in your class room 5 min. before class starts thier are no bells to worn the kids.if you aren't you are put in after school detention every time for three hours it really adds up.My son has had many.In one class he has been reported for being 30 sec. to 1min.This is their oplicy many kids are being sent to after school detiontion this year becasue of O.M. S. school policy.I was told you cant' be even 1sec late for class it is in ziolation of the late policy.no eceptions.But when I questioned the p if he holds his teachers up to the same standereds he shut up.I know from personal experince that they are not on time when i hopl iep meeting they are ussuallytlate or do not show up at all.They sighn it later.I do not feel this is a unfair policy it is to strick I do belive kids need to be on time for school but a policy such as this will make kids and parents think twice about sending kids if they are late just to know they are foing to be spending time in detention for walking into class 1sec late. My son is so afraid to be late he wont sleep at night and has become so anal that he spends time seting and checking his things so he is not late and does not eat lunch so he wont be late from lunch. even with that he was late 1sec to class and has a three hour detention after school tomarrow.am i the only one who thinks this has gone to far?I am thinking about redoing his iep so this is not an isue does anyone  have anyideas of how I should write it so that this is not a problem any more. 

This is interesting to me.    first of all I would find out any laws that have to do with keeping children with handicaps.  Make sure that you have read all your parental rights I have found that has helped me in writing my kids' IEPs.  Most definitely ask for a new IEP.  They have to provide one when ever you want a new one or one re defined. And I would write and talk about if he is belatedly late what a appropriate punishment would be for him.  So that he is not except from being held accountable but not so overwhelmed that it consumes him.  I hope all goes well Boynemamma
 
October 5, 2005, 10:40 pm CDT

Sensory Integration Disfunction & ADHD

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)  

 
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