[Kiwimid]

hi im a student midwife who has just had my 6 year old diagnosed with pdd-nos. we are having heaps of trouble with school and other issues. Any suggestions ??????

[JailRN]

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]

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]

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