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RE: Parents of special needs kids - 8/27/2009 12:04:48 PM   
lusciouslips19


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No but my asperger child gets obsessessed with subjects. Pokeman cards and the other ones they collect. He use to set up his pirate ship with pirates and island etc. to be an exact duplicate of the picture on the box.

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RE: Parents of special needs kids - 8/27/2009 9:33:35 PM   
MagiksSlave


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quote:

ORIGINAL: purepleasure

Out of curiosity...

Did or does anyone else's child spin objects or rock and flap?  In particular, those with a diagnosis of autism.


This is self stimulation, if your child is doing this you need to look into something called a sensory diet... try warm bubble baths with sented soap give them soft things to pet or shiny things to play with. Take them to the swings or buy a rocking chair.

there is a lot more but its late and this is what comes to mind right away.

Magik

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RE: Parents of special needs kids - 8/27/2009 9:38:11 PM   
BeingChewsie


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Yup. Pokemon cards are an obsession here, all arranged in a certain order. My son is obsessed with small things and ordering things and lists.

quote:

ORIGINAL: lusciouslips19

No but my asperger child gets obsessessed with subjects. Pokeman cards and the other ones they collect. He use to set up his pirate ship with pirates and island etc. to be an exact duplicate of the picture on the box.


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RE: Parents of special needs kids - 8/27/2009 9:52:07 PM   
lusciouslips19


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My son use to do self soothing when he was younger. He likes rough knit blankets. He use to rub them against his cheek.

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RE: Parents of special needs kids - 8/28/2009 5:40:24 AM   
purepleasure


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MagiksSlave...

my situation is a little different with my special needs person than most folk here.  My special needs person is my 34 y. o. brother.  I was granted guardianship of him after our mother died in 2007.  He's autistic, severely mentally retarded, bipolar, and schizophrenic.

He was diagnosed with autism in 1978, when VERY little was know about autism, its causes, and whether or not there was an effective treatment plan available.  Most of the early intervention techniques will not apply to our situation.

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RE: Parents of special needs kids - 8/28/2009 5:48:44 AM   
purepleasure


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quote:

ORIGINAL: lusciouslips19

No but my asperger child gets obsessessed with subjects. Pokeman cards and the other ones they collect. He use to set up his pirate ship with pirates and island etc. to be an exact duplicate of the picture on the box.


My brother is like this with TV Guides.  He has every edition since 1984.  All in date order in bookcases in his bedroom, and KNOWS if anyone moved them around even slightly.

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RE: Parents of special needs kids - 8/28/2009 6:46:24 AM   
lusciouslips19


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quote:

ORIGINAL: purepleasure

MagiksSlave...

my situation is a little different with my special needs person than most folk here.  My special needs person is my 34 y. o. brother.  I was granted guardianship of him after our mother died in 2007.  He's autistic, severely mentally retarded, bipolar, and schizophrenic.

He was diagnosed with autism in 1978, when VERY little was know about autism, its causes, and whether or not there was an effective treatment plan available.  Most of the early intervention techniques will not apply to our situation.


Way back around the that time, they blamed autism on the mother. Saying it was from a cold mother that the child retreated. All the ills are always blamed on mom!

Its a whole nother ball O wax when there are multiple disabilities.

< Message edited by lusciouslips19 -- 8/28/2009 6:48:29 AM >


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RE: Parents of special needs kids - 8/28/2009 8:49:35 AM   
tashina


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I have spent the last 20 years caring  for 3 sons each with diff challenges.  First let me explain that I hate the word disability. No child is without ability...the question is what abilities do they have.  My oldest is ADHD, My second oldest was born with a rare genetic anomaly the affected his entire urinary tract system and resulted in a kidney transplant the will have to be done again in the next ten years. the third is my step son and he is emotionally challenged and has attention issues.  To top it off I am hard of hearing(of course one of the boys finds it funny to hide my hearing aids).  I wouldn't change things for any amount of money! There are days when I wonder why I choose to have kids at all, but I am constitantly amazed by them and how they findthier way in this world.  I have had to defend my parenting, my mental status, and even my right to care for them.  I have fought with doctors, done years of research, and read a hundred books, and it all comes down to that moment when you connect with them for a split second and see thier spirit!  I would go thourh it all again for justthat one second in time.

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RE: Parents of special needs kids - 8/29/2009 4:47:12 AM   
Rainfire


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Well, we got our official diagnosis for Mr. Smarties this week so the wheel has started to turn. High Functioning Autism combined with the apparently early stages of another diagnosis. We'll be getting the official letter for the school this week so we can have an aide in place for Mr. Smarties, and services will be started. If this is anything like what I went through with my monster #3, Lumus will soon understand why I am begging and requesting a new cell phone/PDA like a Blackberry. Ok, I admit that I've wanted one for a long time but as the main caregiver for Mr. Smarties, I'll be the one coordinating everything. And I have what I call my own "buggy-boos", near OCD compulsions on organization and planning so that no meetings or appointments are missed. That includes deadlines for paperwork.

            I know, I know..... I need to relax and just let things happen. But this is the way I'm built, I accepted it long ago. 


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RE: Parents of special needs kids - 8/29/2009 9:53:23 AM   
sprksexy


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I can tell you being a special needs man is not fun I cant walk that will sent i had a scroke before burth and i am verry smart and i have a BA in computer but the hard part is finding a woman that want to date me and make shure i am safe

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RE: Parents of special needs kids - 8/29/2009 10:25:22 AM   
lusciouslips19


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quote:

ORIGINAL: Rainfire

Well, we got our official diagnosis for Mr. Smarties this week so the wheel has started to turn. High Functioning Autism combined with the apparently early stages of another diagnosis. We'll be getting the official letter for the school this week so we can have an aide in place for Mr. Smarties, and services will be started. If this is anything like what I went through with my monster #3, Lumus will soon understand why I am begging and requesting a new cell phone/PDA like a Blackberry. Ok, I admit that I've wanted one for a long time but as the main caregiver for Mr. Smarties, I'll be the one coordinating everything. And I have what I call my own "buggy-boos", near OCD compulsions on organization and planning so that no meetings or appointments are missed. That includes deadlines for paperwork.

            I know, I know..... I need to relax and just let things happen. But this is the way I'm built, I accepted it long ago. 



It could be worse Rain. You have the benefit of a National healthcare system in Canada, So this time you dont have to worry about "Official dignosis". My sons diagnosis is through the school system. If he needed me to fight because things werent going well, Im sure i woud need one from the doctors. Here you try not to put official diagnosis in paperwork because the way insurance is here they either wont cover it if you change policies for a term or won cover the meds. I guess I shouldnt worry as my sons fathers job is stable. But the insurance has still changed through the company.

_____________________________

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RE: Parents of special needs kids - 8/29/2009 10:43:00 AM   
Rainfire


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quote:

ORIGINAL: lusciouslips19

It could be worse Rain. You have the benefit of a National healthcare system in Canada, So this time you dont have to worry about "Official dignosis". My sons diagnosis is through the school system. If he needed me to fight because things werent going well, Im sure i woud need one from the doctors. Here you try not to put official diagnosis in paperwork because the way insurance is here they either wont cover it if you change policies for a term or won cover the meds. I guess I shouldnt worry as my sons fathers job is stable. But the insurance has still changed through the company.


See Lushy, for my monster in Idaho, we couldn't get a single service or visit without that official DX for him. Then once he was approved for SSI, we could get what we needed, there was just a waiting list from hell. Some services had a waiting list over a year long.

Similarly, here, to make sure that Mr. Smarties gets what he needs, a DX from a doctor is required, and not just your family doctor but a specialist that can show they have done XYZ testing. One thing that came up Thursday, was that one of the resources that might be needed has a waiting list 2 years long right now, so even though we don't know that we'll need it, we put our names on the list because well, in 2 years, we might have been needing it a year ago.   Plus the doctor said that if our names are on the list and something came up that we needed emergency services, it would help if we were already on the list.

Plus, it was the teacher who said that without a DX from a doctor, they couldn't guarantee that he would get the help he needed in class, like an aide to help keep him focused and on task. That DX makes sure he gets the help he needs at school. I know some people don't like labels but at this point, it's a starting point to make sure Mr. Smarties gets what he needs.

We've also made dietary changes, pulling all artificial colours and flavours from his diet and added some supplements, EFA's and at this time a good multi-vitamin/mineral supplement. We're looking for a specific B6 supplement that the doctor recommends but no one in the area carries it.   We won't even go into the cost of all this, which is straight from our pockets. There will be some tax credits eventually but not yet and these costs won't be reimbursed.

Through all of this, Mr. Smarties doesn't realize a thing and goes on his merry way. As it should be. 


_____________________________

"I have sold my soul to the devil for You, will You still love me when I am soiled, stained and souless in my love for You?
Or is this the beginning of the end?"

Proud member of the Clan Scarlett O'Hair

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RE: Parents of special needs kids - 8/30/2009 12:06:42 PM   
StrictHarshB


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This is going to be quite long as I’ve not been here for quite a while and just found this thread, so I’m going to add my comments to various things that I read as I’m going through.
Firstly, a bit about my background in all of this….. and by the way, I’m in the UK
I have a son (Munch), now 12 who had moderate ADHD, mild Autism and Dyslexia. I lived with his mum till he was 5.5 then we separated and since then we have shared care, most weekends and some school hols with me, the rest with his mum. He was suspected of some sort of problem from the age of about 3 and it was brought to our attention by his nursery group leader. He was partially excluded from school at 4 yrs 8 mths (only allowed in for 3 hours per day and had to be collected from school before lunch break started). Having had several hour long discussions with a paediatric consultant, he was put on medication at 4 yrs 9 mths.
 
After the summer break, a change of class teacher worked wonders and gradually over 1 term / semester, Munch was reintegrated in to full-time school. He built a fantastic bond with that teacher because she showed him that she cared and understood. She kept strict rules and encouraged him to keep within the rules rather than punishing him for his failures – this is HUGELY important for ADHD children. Love, patience and understanding within very very tight and strict rules/guidelines are the best recipe for success. Give no slack, don’t give an inch, your word is law and the child will do as he/she is told. Make sure the consequences for not doing so are immediate and harsh. Being persistent and consistent will pay off. Try to make the same rules apply all the time, ie, behaviour acceptable in public should be the expectation in your own home too – the fewer differences and changes the child has to deal with, the better they will cope. By far the best results will be gained if you start this when the child is very young (under 3) and the older the child is, the harder it will be to implement this effectively.
 
Throughout his life, at home and school these tactics have proved to be the best and most successful. Any situations where there has been a lack of very firm discipline have proved that to be much more difficult, both for him and everyone else around. I’m willing to share a lot more details and evidence as proof if anyone would like them.
 

Munch has been medicated since it’s introduction at 4yrs, 9 mths, we have tried several excluding Ritalin, and he has been taking Equasym and Equasym XL(slow release version) for several years now and also takes Risperidone to help with the symptoms of Autism. The meds make all the difference between manageable and unbearable.
 
As for foods, I agree about the food colourings – stay a million miles away from anything with orange flavouring and almost all coloured sweets, chocolate is no problem at all. Same with drinks – no orange except pure orange with no artificial colourings, Tropicana Blood Red orange juice is a really good option.
For those of you, such as Holly, who have noticed a sudden dramatic change, it is very possibly due to a certain food or ingredient. Make a detailed diary of everything your child eats and look for a pattern. It may be a specific ingredient that is found in several foods.
We were advised to keep Munchs’ salt intake down to a minimum.
 
I saw in one early post about the colouring in Amoxicillin – ask your doctor for Erythromycin instead, it’s a non penicillin drug and comes in Banana flavour.
 
Another thing with Munch is that he does not see danger. Officially over here, it is called ‘lack of cause and consequence perception’ and is evidently a very familiar and regular trait of those with several of the Autistic Spectrum disorders.
 
Children with ADHD are usually very focused on something that grips their concentration and imagination; and they are usually very creative. Try to identify what your childs greatest interest is in and focus their mind on it. For Munch, it is lego, with enough of it, we would not hear a squeak for hours. Ahh bliss J
 
On top of dealing with that, my wonderful slave  t y r a s i a , who some of you on here will know, has ADD and is on Ritalin, so now I have two of them to deal with.
 
For those of you who know my slave, various real life events depict that it is best if she doesn’t come here too often and does not post at all, but she is fine and well. My slave will be back once things have been dealt with to completion.

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RE: Parents of special needs kids - 8/31/2009 12:48:43 AM   
DesFIP


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I disagree that treating a child with a disease harshly is appropriate. Would you treat a diabetic harshly if they couldn't stabilize their blood sugar? Same here. Get them  the right medical help and therapy. Keep encouraging them to succeed while trying different things to help them to succeed. But punishing them for having an illness is not ever acceptable.

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RE: Parents of special needs kids - 8/31/2009 4:28:06 AM   
sirsholly


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quote:

Another thing with Munch is that he does not see danger. Officially over here, it is called ‘lack of cause and consequence perception’ and is evidently a very familiar and regular trait of those with several of the Autistic Spectrum disorders.
quote:

ORIGINAL: DesFIP

I disagree that treating a child with a disease harshly is appropriate. Would you treat a diabetic harshly if they couldn't stabilize their blood sugar? Same here. Get them  the right medical help and therapy. Keep encouraging them to succeed while trying different things to help them to succeed. But punishing them for having an illness is not ever acceptable.
i also have an issue with the term "harsh" but feel i understand what StrictHarsh meant. It is so easy to slip into the mindset of "special needs, not responsible for his behavior, etc" and that is the worst thing that we can do.

What alerted us to the LoudOnes issues, among other things, was the danger he consistently put himself in. Whereas Jim and i must do all we possibly can to keep him safe, his behavior must have consequences and sheeeeesh...the guilt involved with that can drive you crazy!! He does not recognize the danger and sees nothing wrong with what he is doing, then here comes mean old mom, swift with removal from the danger and a time-out if it is the second time it occurred.


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RE: Parents of special needs kids - 8/31/2009 6:43:42 AM   
Rainfire


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  So do any of you other parents just have those days when from the get-go that your young'un is just in a "mood" and it's going to be one of "THOSE" days?




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Or is this the beginning of the end?"

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Profile   Post #: 336
RE: Parents of special needs kids - 8/31/2009 7:08:10 AM   
sirsholly


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_____________________________

PICKED UPON
TECHNO-DOLT
MEMBER OF THE SUBBIE MAFIA
GRACEFULLY CHALLENGED :::::splat:::::
BOOT WHORE
VAA/S FAN

GIVES GOOD HEART (Lushy)

CREATOR OF MAYHEM (practice)


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Profile   Post #: 337
RE: Parents of special needs kids - 8/31/2009 7:24:05 AM   
Bella1965


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G'afternoon all:


(Fast Reply)

Not to bust into a serious thread to cause disharmony, but rather to provide a silly note and hopefully make someone smile...
Aren't we all "special needs" children, in our own ways? *chuckles* My short bus got a flat years ago, and here I am.
For those dealing with the challenges, I salute you.


Stay safe, play nice, & share your toys w/ others...





Bella


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RE: Parents of special needs kids - 8/31/2009 8:12:12 AM   
purepleasure


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I'm not a special needs child. Nor am I a high maintenance person. I'm on the short bus to help others out on their lifetime ride. However, that occasional flat on the short bus gives me time to get off the bus and smell the roses once in awhile. Thank God.


Rain, on THOSE days, my brother wakes up with really dark circles under his eyes, and I know to be prepared mentally for it. Does Mr. Smarties show any kind of physical signs prior to a day that's sure to be a challenge?

_____________________________

Patience, grasshopper.

Your stupidity does not impress me.

blame it on your hormones!!! - beerbug aka ydd

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RE: Parents of special needs kids - 8/31/2009 8:26:30 AM   
Rainfire


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Yes, his eyes are red-rimmed like he had a lousy night's sleep, the colour of his face looks almost pallid or just not right, and there's just this tone in his voice, a belligerence and negativity that I can tell within seconds that it's one of those days. Like today...

Now he's off to RhinoRumps - I'm sure we'll hear that everything is JUST FINE, because that dumbass stoopid cow won't admit anything to us, too afraid of how it would make HER look.


_____________________________

"I have sold my soul to the devil for You, will You still love me when I am soiled, stained and souless in my love for You?
Or is this the beginning of the end?"

Proud member of the Clan Scarlett O'Hair

(in reply to purepleasure)
Profile   Post #: 340
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