Topic: Group for Parents of special needs children
njmom05's photo
Sat 09/19/09 04:30 PM


That sucks, is there someone you can talk to at the school and get that guy away from your child? That is unacceptable and completetly ignorant on his part to do that to your child. I'd be bitching about him. I had to do that with my son's bus driver and the aide on the bus, between the two of them, there isn't one brain. After a few calls to the transportation dept., it seems a little better now.



Id really like to. His grandmother handles everything since I am out of state. I dont want to make waves there if I cant change anything.

His father is a psycologist, and supposedly they have respect for him, so Im going to speak to his father today, and see if anything can be done.

I just dont appreciate that kind of behavior in any way.. its a real detriment, and absoloutely counterproductive.

Sounds like you have it under control. Good luck and I hope there is a positive outcome, for your son's sake.
flowerforyou flowerforyou

earthytaurus76's photo
Sat 09/19/09 04:36 PM



That sucks, is there someone you can talk to at the school and get that guy away from your child? That is unacceptable and completetly ignorant on his part to do that to your child. I'd be bitching about him. I had to do that with my son's bus driver and the aide on the bus, between the two of them, there isn't one brain. After a few calls to the transportation dept., it seems a little better now.



Id really like to. His grandmother handles everything since I am out of state. I dont want to make waves there if I cant change anything.

His father is a psycologist, and supposedly they have respect for him, so Im going to speak to his father today, and see if anything can be done.

I just dont appreciate that kind of behavior in any way.. its a real detriment, and absoloutely counterproductive.

Sounds like you have it under control. Good luck and I hope there is a positive outcome, for your son's sake.
flowerforyou flowerforyou



Thanks njmom, your awesome. flowers

njmom05's photo
Sat 09/19/09 04:39 PM




That sucks, is there someone you can talk to at the school and get that guy away from your child? That is unacceptable and completetly ignorant on his part to do that to your child. I'd be bitching about him. I had to do that with my son's bus driver and the aide on the bus, between the two of them, there isn't one brain. After a few calls to the transportation dept., it seems a little better now.



Id really like to. His grandmother handles everything since I am out of state. I dont want to make waves there if I cant change anything.

His father is a psycologist, and supposedly they have respect for him, so Im going to speak to his father today, and see if anything can be done.

I just dont appreciate that kind of behavior in any way.. its a real detriment, and absoloutely counterproductive.

Sounds like you have it under control. Good luck and I hope there is a positive outcome, for your son's sake.
flowerforyou flowerforyou



Thanks njmom, your awesome. flowers

Awe, thanks. Right back atcha!
flowerforyou flowerforyou

sirens9's photo
Mon 09/28/09 06:13 PM
My son is seven and he has Autism Spectum Disorder, a form of autism. Luckily, with therapy he should be mainstream at school in a few years. I know it could be worse but it can be overwhelming at times. I just relocated from Atlanta, GA to Florida for his therapy. My ex tried to stop me from moving by filing for custody of our kids -- we have three children. I ended up moving and letting my 10 year old live with his dad in Atlanta. This has been a very difficult period but on the upside, our son is doing much better in school and therapy since the move - so I cannot complain.

njmom05's photo
Mon 09/28/09 08:06 PM

My son is seven and he has Autism Spectum Disorder, a form of autism. Luckily, with therapy he should be mainstream at school in a few years. I know it could be worse but it can be overwhelming at times. I just relocated from Atlanta, GA to Florida for his therapy. My ex tried to stop me from moving by filing for custody of our kids -- we have three children. I ended up moving and letting my 10 year old live with his dad in Atlanta. This has been a very difficult period but on the upside, our son is doing much better in school and therapy since the move - so I cannot complain.

Hi and welcome to Mingle! Sounds like you've had some struggles lately, but you are on the right track! We are all here for support, this is a great site with some great people!
flowerforyou flowerforyou

njmom05's photo
Fri 10/23/09 05:42 PM
Edited by njmom05 on Fri 10/23/09 05:43 PM
I have some poems I'd like to post here about special needs kids. These were emailed to me and I just love them! I hope everyone else does, too! flowerforyou flowerforyou

I am the Child Who Cannot Talk.
You often pity me. I see it in your eyes.
You wonder how much I am aware of...I see that as well.
I am aware of much...whether you are happy or sad or fearful,
patient or impatient, full of love and desire, or if you are just
doing your duty by me. I marvel at your frustration,
knowing mine to be far greater, for I cannot express myself nor
my needs as you do. You cannot conceive my isolation,
so complete it is at times. I do not gift you with clever
conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs, or
comments about the world around me. I do not give you
rewards as defined by the world's stardards...
great strides in development that you can credit yourself.
I do not give you understanding as you know it.
What I give you is so much more valuable...I give you
instead opportunities. Opportunities to discover the depth
of your character, not mine; the depth of your love, your
commitment, your patience, your abilities; the opportunity to
explore your spirit more deeply than you imagined possible.
I drive you further than you ever go on your own, working
harder, seeking answers to your many questions,
creating questions with no answers.


I am the Child Who Cannot Walk.
The world sometimes seems to pass me by. You see the
longing in my eyes to get out of this chair, to run and
play like other children. There is much you take for
granted. I want the toys on the top shelf. I need to go to the
bathroom...oh...I've dropped my spoon again. I am dependent
on you in these ways.
My gift to you is to make you aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.


I am the Child Who is Mentally Impaired.
I don't learn easily, if you judge me by the world's
measuring stick. What I do know is infinite joy in the
simple things. I am not burdened as you are with the
strifes and conflicts of a more complicated life.

My gift to you is to grant you the freedom to enjoy
things as a child, to teach you how much your arms
around me mean, to give you love.
I give you the gift of simplicity.


I am the Disabled Child.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I give to you my innocent trust, my dependency upon you.
I teach you of respect for others and their uniqueness.
I teach you about the sanctity of life.
I teach you about how very precious this life is and
about not taking things for granted.
I teach you about forgetting your own needs and desires
and dreams. I teach you giving.
Most of all, I teach you hope and faith.

smilingtearz's photo
Thu 10/29/09 05:07 PM
Hi everyone i have 2 boys 12yr old whom has a learning disability.

9 yr old whom has Lennox Syndrome.
If anyone knows anything bout the topic i'd like to know at what age does it go ? or they have it 4 life ? we have bein told he will grow out of it but when is the Question ?

good to see a support thread hereflowerforyou

njmom05's photo
Thu 10/29/09 05:13 PM

Hi everyone i have 2 boys 12yr old whom has a learning disability.

9 yr old whom has Lennox Syndrome.
If anyone knows anything bout the topic i'd like to know at what age does it go ? or they have it 4 life ? we have bein told he will grow out of it but when is the Question ?

good to see a support thread hereflowerforyou

Hi and welcome! I am sorry I don't know anything about that syndrome. What do your doctors say about it?
flowerforyou waving

smilingtearz's photo
Thu 10/29/09 05:28 PM

Hi and welcome! I am sorry I don't know anything about that syndrome. What do your doctors say about it?
flowerforyou waving

Hi there hun thank you 4 the welcome
He says he will out grow it with-in teen years & theres no treatment surgical it can't be done on what he has.
It's actually Lennox Gastaut Syndrome,There is another type of it as well but different name they only live till they are 18.
Lennox–Gastaut syndrome (LGS), also known as Lennox syndrome, is a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types.The Lennox-Gastaut syndrome designates a type of epilepsy with multiple different types of seizures, particularly including tonic (stiffening) and atonic (drop) types of seizures. Intellectual development is usually, but not always, impaired.

http://www.ninds.nih.gov/disorders/lennoxgastautsyndrome/lennoxgastautsyndrome.htm

njmom05's photo
Thu 10/29/09 05:53 PM


Hi and welcome! I am sorry I don't know anything about that syndrome. What do your doctors say about it?
flowerforyou waving

Hi there hun thank you 4 the welcome
He says he will out grow it with-in teen years & theres no treatment surgical it can't be done on what he has.
It's actually Lennox Gastaut Syndrome,There is another type of it as well but different name they only live till they are 18.
Lennox–Gastaut syndrome (LGS), also known as Lennox syndrome, is a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types.The Lennox-Gastaut syndrome designates a type of epilepsy with multiple different types of seizures, particularly including tonic (stiffening) and atonic (drop) types of seizures. Intellectual development is usually, but not always, impaired.

http://www.ninds.nih.gov/disorders/lennoxgastautsyndrome/lennoxgastautsyndrome.htm

Wow, god bless you! My son just started having seizures a few months back and they frankly scare the hell out of me. Its refreshing to hear parents who learn so much about their kids syndromes and aren't afraid to ask questions. flowerforyou flowerforyou

smilingtearz's photo
Thu 10/29/09 06:25 PM

Wow, god bless you! My son just started having seizures a few months back and they frankly scare the hell out of me. Its refreshing to hear parents who learn so much about their kids syndromes and aren't afraid to ask questions. flowerforyou flowerforyou

Yes the thing that scares me the most ok not nice to say but as we live each day as it is a life threatening illness,one day they here one day they may not,maybe i shouldn't have said that but when you think how they fall just how much damage they are doin to the brain & themselves,can't help not thnking like i do.It's good to be there & help others out & the comfort of getting it out in open it makes mothers fathers wanted makes us know that we are not alone,what kind of seizures does he have hun ?

njmom05's photo
Thu 10/29/09 06:32 PM


Wow, god bless you! My son just started having seizures a few months back and they frankly scare the hell out of me. Its refreshing to hear parents who learn so much about their kids syndromes and aren't afraid to ask questions. flowerforyou flowerforyou

Yes the thing that scares me the most ok not nice to say but as we live each day as it is a life threatening illness,one day they here one day they may not,maybe i shouldn't have said that but when you think how they fall just how much damage they are doin to the brain & themselves,can't help not thnking like i do.It's good to be there & help others out & the comfort of getting it out in open it makes mothers fathers wanted makes us know that we are not alone,what kind of seizures does he have hun ?

My son's seizures aren't too bad, but no seizure is good. His last less than a minute, normally I think he can tell when they are going to start, he lays down and pretty much his body twitches and when he comes out of it his right arm is always numb. It takes him a good half hour before he is completely back to himself. I am having trouble with his freakin pediatrician getting them to write a referral since most neurologists are out of network and they won't write an out of network referral. I finally called them today and demanded an in network neurologist.

smilingtearz's photo
Thu 10/29/09 06:42 PM

My son's seizures aren't too bad, but no seizure is good. His last less than a minute, normally I think he can tell when they are going to start, he lays down and pretty much his body twitches and when he comes out of it his right arm is always numb. It takes him a good half hour before he is completely back to himself. I am having trouble with his freakin pediatrician getting them to write a referral since most neurologists are out of network and they won't write an out of network referral. I finally called them today and demanded an in network neurologist.

So your son's are a totally different to my son's guess there is so many different ones, my son just drop without knowin at times i used try catch him bef he does but was not possible happend like lightening so quick,now he is on solone tablets its controlled his seizures but they cant stay on steroids all there life.thats a good thing he knows when they are happening, my son held the side of the chair when he used to drop sideways.It helps these days to demand or we don't get no were.

njmom05's photo
Thu 10/29/09 06:53 PM


My son's seizures aren't too bad, but no seizure is good. His last less than a minute, normally I think he can tell when they are going to start, he lays down and pretty much his body twitches and when he comes out of it his right arm is always numb. It takes him a good half hour before he is completely back to himself. I am having trouble with his freakin pediatrician getting them to write a referral since most neurologists are out of network and they won't write an out of network referral. I finally called them today and demanded an in network neurologist.

So your son's are a totally different to my son's guess there is so many different ones, my son just drop without knowin at times i used try catch him bef he does but was not possible happend like lightening so quick,now he is on solone tablets its controlled his seizures but they cant stay on steroids all there life.thats a good thing he knows when they are happening, my son held the side of the chair when he used to drop sideways.It helps these days to demand or we don't get no were.

You are correct, there are sooo many different kinds these kids can get. I can't imagine its easy to catch him when he starts to fall. You'd have to be standing right next to him pretty much 24/7. Is there a different medication that they can give him so he can be on it long term? I know once seizure meds are started they can't stop them. Do seizure meds stop them or just slow them down?

smilingtearz's photo
Thu 10/29/09 07:12 PM

You are correct, there are sooo many different kinds these kids can get. I can't imagine its easy to catch him when he starts to fall. You'd have to be standing right next to him pretty much 24/7. Is there a different medication that they can give him so he can be on it long term? I know once seizure meds are started they can't stop them. Do seizure meds stop them or just slow them down?

Well i pretty much was except when he was at school, my eyes were a hawk lol every minute of day.Interesting question hun well its stopped his completely except when he sleeps he twitches every now & then but clear of seizures.As for slowing my son down i would say no he is on a high each day what i mean via that he's so full of jelly beans a Australian saying lol i can't keep up,But one thing i do know since he's bein on them its changed his life so much & his speech is more understanding.he has bein on several medications from start to now i was paying $100 for one kind but never done him any good,They can reduce and slowly take them off then start something new.

njmom05's photo
Thu 10/29/09 07:17 PM


You are correct, there are sooo many different kinds these kids can get. I can't imagine its easy to catch him when he starts to fall. You'd have to be standing right next to him pretty much 24/7. Is there a different medication that they can give him so he can be on it long term? I know once seizure meds are started they can't stop them. Do seizure meds stop them or just slow them down?

Well i pretty much was except when he was at school, my eyes were a hawk lol every minute of day.Interesting question hun well its stopped his completely except when he sleeps he twitches every now & then but clear of seizures.As for slowing my son down i would say no he is on a high each day what i mean via that he's so full of jelly beans a Australian saying lol i can't keep up,But one thing i do know since he's bein on them its changed his life so much & his speech is more understanding.he has bein on several medications from start to now i was paying $100 for one kind but never done him any good,They can reduce and slowly take them off then start something new.

Thats great to hear that he isn't slowed down with the meds. I was so afraid my son would be sleepy on them. He is very active especially at school and I'd hate for that to change. My son is always happy, always smiling.

Delightful39's photo
Thu 10/29/09 11:39 PM
Hi, I have three kids 21, 11, and 9 who are high functioning autistic. The oldest is living on his own. Each have a special gift. The 21 yr,boy, plays the guitar like he's been doing it from birth, a natural. The 11, boy, I a computer whiz. Another natural at it. My 9 yr, girl, can do high level math in her head. Teachers won't let her do the math in her head, they want it on paper. She can't do it like that. She has many melt downs over it.

Along with autism, they have behavioral issues too. The 11yr old got kicked out of one school at 10. He's a big boy so I totally understood the school has to protect the other students. The 21 dropped out of high school because he said school is boring and way behind in education. He was asking about getting his GED, he asked to take a sample test...They told me he is at a BA level in many areas...He didn't follow through with the GED...My daughter just melts into a ball and cries...

I myself have had a stroke, brain surgery, and knee surgery in 2006. In 2007 I was in an accident and suffered mild brain damage, and had to have my lower spine fused. Before all of this I was running marathons, triatholet for charity, worked for a police dept., which these I no longer can do. So, Having special needs kids....I love....wouldn't change it for the world......

God bless all of you.

PacificStar48's photo
Fri 10/30/09 12:53 AM

I am right here with all of you. I have two children: a 1 year old daughter and a 2 year old son both whom has their own disabilities. My daughter was born at 30 weeks gestation. She has major heart conditions, on a feeding pump, required oxygen and blood transfusions. My son has kidney problems and has 3 blockages in his kidneys. He has developed hypertension due to the kidney issues. And has sensory intergration issues. If anyone has any information on sensory intergration in little children, I desperately need help. Thanks for listening.


I would contact a Magazine called Exceptional Parent. They are great at resourceing people and give people wonderful support. Contacting a lady named Gail Lincoln in Lexington, Kentucky at the Lexington Red Cross. They have and 800 number. I will see what I can find for you. National Organization for Rare Disorders might be a good place to start.

no photo
Fri 10/30/09 05:40 PM
I belong to several really good groups for parents of special needs children.

The first two are yahoo groups:

SpecialChildExchange

SCE-Equipment (this one is a spin off of the first and is solely for buying and selling outgrown or unneeded equipment and supplies)

And also a great email group is called:
OUR-KIDS@LISTSERV.SYR.EDU

All of these have been lifesavers for me in the past. Super peer support and resources for finding things you need and can't afford or can't find otherwise.

caution76's photo
Fri 11/13/09 02:50 PM
I have a soon to be 6yr old little girl with adhd and she's also bi polar. It's been nothing but a struggle to even get the right help she needed let alone someone who I can talk too. when you have only your 6yr old conversations are limited.lol so I would like to say hello to everyone. nettie