mum of a pdd-nos kid needs help

JailRN · Aug 15, 2007

First off, God Bless, sit down and hang on, for you are in for the ride of your life.

I have been dealing with this for 54 years---

There is a WONDERFUL man, who is the 'guru' of these kids, named Tony Atwood (Attwood)--he is the consumate expert, has written numerous books on the subject that are so "on the money" about our kids. He lives in Australia, but tours and speaks at many conferences. If he is in your area, do whatever you can to hear him.

Have LOTS of patience--I have 2 of these boys, and I, too, have it. Learn what services are available in your area, as well as what the laws are regarding his education (here in California, if the public school can't teach them, they HAVE to pay for 'non-public school' ('NPS', basically, a private school paid for by the taxpayers) I can force the issue and have them 'mainstreamed' into a 'regular classroom, the teachers will HAVE to teach them, but, I don't think I can expect them to--they didn't sign up to be special ed teachers, they don't have the desire, the training, or the patience to deal with our kids. Plus, I can't force the other kids to accept them. My sons are a little different--they don't speak like the other kids do, they use 'bigger words' and look at things differently, they do not understand phrases like "quit pulling my leg" (but, I'm not even touching you), they are literal thinkers, like a computer, it's hard to figure out if something on the computer is said in jest, or anger, or seriously. They are targets of bullies and usually very niave. They aren't as mean-spirited as other kids, and they have a tough time understanding the concept of a 'friend', to them, if they have a 5 minute conversation with someone, (which is usually a monologue of a topic of their choosing), they think this person is their 'best friend'--they don't understand the difference between a dangerous stranger, a stranger, an aquaintance, a friend, and a 'best friend'. They don't know when to say 'goodbye', or 'I better let you get back to work', and shut up and leave. They don't know how to go up to another kid and say, 'hey, I have a spiderman shirt, too. Do you like spiderman? Let's go play' they will say something off the wall, that makes PERFECT sense to them, (and you, too, if you follow their thought process,) like

'hm, he has a spiderman shirt on, my grandmom bought me a spiderman shirt, my grandmom has a blue chair that is SO comfortable and she lets me sit in it, but, I can't drink soda in the chair, because she doesn't want me to spill it)

and they will say to the other kid "does your grandmom let YOU drink soda?"

HUH????

It makes sense, if you can think like they do, or if you can ask them why they asked that question and they can tell you, some don't have the vocabulary to.

Some call PDD-nos "Asperger's Syndrome" or "High functioning autism". These kids have a really tough time socially--the teachers love them because they have NO SECRETS. They know what's going on in the class and will freely tell it (they haven't taken the same 'code of silence' that the other kids have taken). But, the kids don't like them, they can be labeled "tattle tales", 'big mouths', 'know it alls', 'little professors' and teachers will say, 'oh, you are just the SMARTEST kid I EVER knew"--they are, but when my boys heard that, the teacher lost any capacity to teach them..because, they were smarter than the teacher..

they will have a passion for something that makes no sense to anyone else, (train schedules in France) and are usually math, science, computer geniuses. Anything logical they excell at. They don't do well in history, (boring, who cares, and they are very opinionated) They don't do well writing, it's very complex and will often go over the same letter over and over again. They are perfectionists and some are OCD. They get overstimulated quickly and will spin, flap, scream, cover their ears and withdraw. It's called 'stimming', or 'autistic meltdowns'--it's bad enough in a store when they are 6 and have one, it's another thing when they are 13...and look like a spoiled brat who's throwing a temper tantrum.

One thing that's REALLY hard--they are usually 'clasical beautiful' kids, cuter than the rest, which is a double whammy. They do not 'look' handicapped. If you see s child who has Downs Syndrome in the store and the parents are having trouble with the child, you don't pass judgement on the parents because the child is handicapped and 'can't help it', BUT, if you see my kids with the same behavior, people will comment, "just smack him", or 'IF THAT WAS MY CHILD...I WOULDN'T ALLOW HIM TO DO THAT", bad parenting, etc, police are often called, it's horible.

Go on the internet and see if there are support groups in your area.Know that you are not alone. It USED to be 1 in 166 children diagnosed with this, it is now 1 in 150...there's such a wide range of disabilities and each child is affected differently.

I'm a RN, my oldest son is more affected than I am, my younger son is more affected than his brother.

Know there is hope, know there is help. Don't give up and don't feel alone, this is a BIG boat we both are in (and getting bigger-autism is an epidemic)

Keep in touch

Sharon

Kiwimid · Aug 17, 2007

Thanks Sharon. We live in New Zealand and i am having difficulty getting the school to take the diag seriously. It seems they think that if he just felt better about himself, it should resolve......aaarrrggghhhhh@!!!!!!!! i get so frustrated at these ppl. they call themselves educators but they need the education. they just dont get it. i still dont get what pdd nos is as i have been given different explainations from everone i have asked. any tips for dealing with the skeptics????

JailRN · Aug 26, 2007

What is not understood by the general public is that he feels fine about himself..it's only when he's in school surrounded by neurotypical kids who are telling him he's 'wierd', 'different', 'stupid', etc, that he starts to realize he's different. (This is why I don't like mainstreaming) Other kids can be SO cruel. To those close to you, or who deal with your son on a daily basis, who are entitled to an explaination, I refer them to the old TV show "Third Rock From the Sun"--classic Asperger's (or PDD-NOS)..I also tell them, not to use phrases like, "Quit pulling my leg", or "It's raining Cats and Dogs"--we are very literal thinkers, and don't get sarcasm, teasing, anger, etc. We're targets for bullies and tend to think these folks are our best friends. Our brains are like computers--we are called 'mind blind', can't 'read' faces. Don't get me wrong, these 'social skills CAN be taught and lucky for you, your son is still very young. There are many good books on Amazon.com for Asperger's Syndrome including a DARLING one which, I think is called 'All Cats Have Asperger's Syndrome'. It's geared towards young children and explains brilliantly what AS is all about. There's also another one, (?) I Have AS, which is pretty much for the neighborhood type kid, about 10 year olds, explaining that I don't mean to be bossy, but, I have to follow the rules of a game, (and expect everyone else to also) and how to help me relate to you when we play together.

What are the laws for education in NZ? Here, in California, the schools are bound by law to educate these kids--sometimes (heck, MOST OF THE TIME) you will end up getting a special ed lawyer to fight for the child--after that, usually, the school will do what you ask, as long as it's not outrageous..we also have what is called "Regional Centers" where they treat kids with birth defects, (MR, Down's, CP, autism) and they are coming around to accepting the dx of AS..we have camps, schools, afterschool programs, respite care, conferences to help the family. Of course, again, you have to fight for it, but it does get easier as time goes on..and more kids are dx...it used to be 1-166 births were autistic, not it's 1-150 and probably will drop again soon.....

keep the faith--it will get better--also remember, AS are VERY smart people, and like a world famous MD told me, "Hey, you can teach a kid anything, but you can't teach them to be smart..and YOUR kid is smart, so don't worry about it"..

Any chance of moving to USA??

e-mail me

S

mp2005 · May 24, 2008

Sharon:

I was very interested in your comment. Im a new nurse graduate,and I have a 8 year old son who has been diagnosed the first time he was admitted in June/07 with Bipolar and in Feb /08 with autism. I have take him to 2 docs and 1 nurse pract and they all say now its autism.

I kind of had a hard time accepting it because of what he does: very explosive in school provoked and unprovoked. rages you could not imagine, attacks everyone when you least expect it in school. Not so much at home. Mentally I can tell you he talks just like you mentioned something from left field that Im also like "huh". SO when the kids are over his age he's not mentally in the same level.

Hes in a BED class(behav emot disorder)class. 10 kids 2 special teachers, 2 BID guys(behavior intervention big guys)who float the area if the children get into such a rage or out of control that they are harming themselve or teachers. These are the guys who restrain or immobilize the children.The teachers are wonderful and very nurturing. However I dont know if Colby has to be there or in an autistic class. WHich is why were awaiting the nerurolo appt and psychol eval to give to the school to see if he is autistic or not. Im still a little confused as to the difference of bipolar and autistic. I dont think anyone knows what he has. One time they said he had PDD-NOS. ADHD he's always had. He's always been developmentally delayes,fine motor skills problem,and speech impaired. He actually talks so much better now.

Lately, we've been going thru an unstable phase. We'll be 3 months ok and then 3 months really bad. On the 9th they almost baker acted him because lately he has been hearing voices telling him to "kill" and "cut" people". the doctors have confirmed he's hearing them. I thought schizophrenics heard voices? Anyhow, they didnt want to increase the abilify until the psychol eval and the neurologist see him to see if he is actually autistic. But I pushed them to increase the abilify,because this week alone he has been restrained and immobilized about 4 times.

He also has sensory issues. Bath time is an issue, head banging(not so much)just when a lot of stimulation or too many people or noise.

Wed they just increased his abilify to 10mg in am and 10mg hs. From like 2.5 am and 5 in hs. Im hoping this will work. I dont intend to hospitalize him like everyone is suggesting because its just a "bandaid" within 3 months were downhill again and it's traumatizing for everyone. I just feel like no one has the answer to what's going on with him. Is it autism, is it bipolar or is it schizophrenia?? These voices concern me.

I feel like now that I got a good job right after school maybe i should of gotten a nite job,so that when i have to be called to pick him up like lately it wont be a problem. How does any single mom retain a day job?

Anyhow, i guess im just venting and hoping that things work out and that he stabilizes. Does any of this sound familiar??

Any advice would be great.

First off, God Bless, sit down and hang on, for you are in for the ride of your life.
I have been dealing with this for 54 years---
There is a WONDERFUL man, who is the 'guru' of these kids, named Tony Atwood (Attwood)--he is the consumate expert, has written numerous books on the subject that are so "on the money" about our kids. He lives in Australia, but tours and speaks at many conferences. If he is in your area, do whatever you can to hear him.
Have LOTS of patience--I have 2 of these boys, and I, too, have it. Learn what services are available in your area, as well as what the laws are regarding his education (here in California, if the public school can't teach them, they HAVE to pay for 'non-public school' ('NPS', basically, a private school paid for by the taxpayers) I can force the issue and have them 'mainstreamed' into a 'regular classroom, the teachers will HAVE to teach them, but, I don't think I can expect them to--they didn't sign up to be special ed teachers, they don't have the desire, the training, or the patience to deal with our kids. Plus, I can't force the other kids to accept them. My sons are a little different--they don't speak like the other kids do, they use 'bigger words' and look at things differently, they do not understand phrases like "quit pulling my leg" (but, I'm not even touching you), they are literal thinkers, like a computer, it's hard to figure out if something on the computer is said in jest, or anger, or seriously. They are targets of bullies and usually very niave. They aren't as mean-spirited as other kids, and they have a tough time understanding the concept of a 'friend', to them, if they have a 5 minute conversation with someone, (which is usually a monologue of a topic of their choosing), they think this person is their 'best friend'--they don't understand the difference between a dangerous stranger, a stranger, an aquaintance, a friend, and a 'best friend'. They don't know when to say 'goodbye', or 'I better let you get back to work', and shut up and leave. They don't know how to go up to another kid and say, 'hey, I have a spiderman shirt, too. Do you like spiderman? Let's go play' they will say something off the wall, that makes PERFECT sense to them, (and you, too, if you follow their thought process,) like
'hm, he has a spiderman shirt on, my grandmom bought me a spiderman shirt, my grandmom has a blue chair that is SO comfortable and she lets me sit in it, but, I can't drink soda in the chair, because she doesn't want me to spill it)
and they will say to the other kid "does your grandmom let YOU drink soda?"
HUH????
It makes sense, if you can think like they do, or if you can ask them why they asked that question and they can tell you, some don't have the vocabulary to.
Some call PDD-nos "Asperger's Syndrome" or "High functioning autism". These kids have a really tough time socially--the teachers love them because they have NO SECRETS. They know what's going on in the class and will freely tell it (they haven't taken the same 'code of silence' that the other kids have taken). But, the kids don't like them, they can be labeled "tattle tales", 'big mouths', 'know it alls', 'little professors' and teachers will say, 'oh, you are just the SMARTEST kid I EVER knew"--they are, but when my boys heard that, the teacher lost any capacity to teach them..because, they were smarter than the teacher..
they will have a passion for something that makes no sense to anyone else, (train schedules in France) and are usually math, science, computer geniuses. Anything logical they excell at. They don't do well in history, (boring, who cares, and they are very opinionated) They don't do well writing, it's very complex and will often go over the same letter over and over again. They are perfectionists and some are OCD. They get overstimulated quickly and will spin, flap, scream, cover their ears and withdraw. It's called 'stimming', or 'autistic meltdowns'--it's bad enough in a store when they are 6 and have one, it's another thing when they are 13...and look like a spoiled brat who's throwing a temper tantrum.
One thing that's REALLY hard--they are usually 'clasical beautiful' kids, cuter than the rest, which is a double whammy. They do not 'look' handicapped. If you see s child who has Downs Syndrome in the store and the parents are having trouble with the child, you don't pass judgement on the parents because the child is handicapped and 'can't help it', BUT, if you see my kids with the same behavior, people will comment, "just smack him", or 'IF THAT WAS MY CHILD...I WOULDN'T ALLOW HIM TO DO THAT", bad parenting, etc, police are often called, it's horible.
Go on the internet and see if there are support groups in your area.Know that you are not alone. It USED to be 1 in 166 children diagnosed with this, it is now 1 in 150...there's such a wide range of disabilities and each child is affected differently.
I'm a RN, my oldest son is more affected than I am, my younger son is more affected than his brother.
Know there is hope, know there is help. Don't give up and don't feel alone, this is a BIG boat we both are in (and getting bigger-autism is an epidemic)
Keep in touch
Sharon

fruit shoot · Oct 5, 2008

to jailrn

hi i've read your post and would be really thankful for a reply from you..i'm a nurse here in england i've got a daughter with autistic spectrum disorders and i'm waiting for a visa to work there as a nurse and preferred california.

do they have good educational services...can i get a place for a special school for my daughter..how long is the wait to get her in place... do you have to pay for the school -my daughter got severe autism not talking...do you have to pay a huge amount of health insurance due to autism- she have regular medication like resperidone and epilim...

i'm really sorry bout all the questions...but hoping to hear from you soon

thanks so much

dianabay · Nov 7, 2008

Hi Fruit shoot:

The earlier posts were from a thread started a while ago, so I thought I would jump in and help if I can.

I am a RN and I have a Certificate in Autism Spectrum Disorders (ASDs). I have also gone through the special ed evaluation process with my 5 year old son.

First, familiarize yourself with the IDEA (the individuals with Disabilities Education act). This is the law that guarantees children with disabilities a FREE and Appropriate Education (FAPE), and spells out all your rights as a parent. Public schools are provided funding to carry out special ed. services.

The school may accept her previous diagnosis or education plan, but most likely will do their own educational evaluation. You may also REQUEST an evaluation through the school district. Once you have formally requested a special education evaluation, the district has a set amount of time to conduct the eval, and share the results. PHOTOCOPY and SUBMIT EVERY MEDICAL AND EDUCATIONAL RECORD YOU HAVE. Keep everything, and keep copies. They will then tell you whether your child is eligible for services, and schedule an IEP meeting. I can't imagine that your daughter would not be eligible.

At the IEP meeting , the team is supposed to COLLABORATE WITH YOU to devise an IEP, an Individualized Education Plan. They SHOULD NOT come into the meeting with a plan already devised in your absence and DICTATE what services your child will receive. That would be a violation of the IDEA law. DO YOUR HOMEWORK_ KNOW what your child needs in order to learn. That way if the IEP is unacceptable you have enough knowledge to know to renegotiate it. Ask your child's doctors, therapists, teachers what they recommend, what you should request.

This is EXTREMELY important: Only if the school concedes that your child has special needs AND they can't accommodate those needs are they obligated to pay for private placement. If the school can provide an appropriate accommodation , they will NOT pay for a private school. If, on the other hand, you feel the IEP is inadequate, you can ask for an impartial hearing. If you request private school tuition, you must demonstrate that the private school IS able to meet her needs (and this is often not as easy as it sounds- the burden of proof is on you). The impartial hearing may rule in your favor or in the school's favor. If it rules in the school's favor, this process can become protracted and costly. So the best thing to do is be knowledgeable and work with the IEP team. Most districts have the best interests of the children at heart. The best defense against those that do not, is to be knowledgeable about your child's needs, and about your rights. Get a copy of the IDEA.

Now, that said, the schools are obliged to provide a free and APPROPRIATE education, not the BEST education. You may feel your daughter needs more speech therapy or more OT, but the school may not be willing or able to provide as much as you think she should have - health insurance may cover some or you may have to pay for additional sessions; you will need to look closely at your policy.

I hope that helps. If you have any other questions, feel free to ask. I will do what I can to help.

How old is your daughter? This is important to know as it will determine where you go for service- through the school system or the early intervention route.

Diana

dianabay · Nov 8, 2008

I forgot to mention: As for health insurance, most likely they will consider your daughter's ASD a pre-existing condition. That could mean much higher premiums, or they will exclude coverage for any treatment related to the ASD.

However, as I said, any services provided by the school district while your child is in school is FREE.

Let me know if I can help any further....

Diana

fruit shoot · Nov 10, 2008

hi diana thank you very much for your reply.. my daughter is ten year old and at the minute i am still waiting for a US visa...i will keep this post and use it as a guide when the time comes that we had the visas...thank you so much...i'll get in touch to you as soon as we arrive in the US...thank you so much and God bless....

dianabay · Nov 10, 2008

Hi Fruit shoot:

No problem; I am very happy to help.

OK, so, once you know where you will be living, you will request an evaluation through your local school district. We went to our son's school in person, and they had the paperwork there (I am not sure if all do).

Also, be sure to find the "Regional Center" that serves your area. They will be instrumental in helping you find appropriate resources. And by the way, California is one of the best places to be if you have a child with ASD.

Good luck to you and your daughter; contact me anytime.

Diana