totally at a lost for words-need help | Autism PDD
Cyndie,
If you have a dx from the doctor the school should definitely be
using that dx not their own opinions to go off of. They are not
trained to dx our children. The hoops they have to jump through in
the IEPs are crazy so the wording they used with you might just have
been weird. I felt like I didn't know what they were talking about
most of the time. I think that his therapists and teachers at school
would benefit from knowing that dx. They probably have not spent
enough time with mason to really know whether the dx fits or not.
He will also qualify for more services like extended school year and
such with the autism dx. Do they have a report from your doctor in
his file? When I went to Gavin's IEP I made sure that everyone there
had the doctors report so no one could argue the dx. He is very high
functioning so people question his dx a lot too. I feel like his
therapists and teachers are better able to understand his needs
knowing that he has autism. Good luck!
Karen
Hi CYNDIE!! I just wanted to say "WELCOME TO THE BOARD"!!!!
You'll LOVE this board, there are lots of caring, informative people here!! I'm Linda, I'm a 40 y/o stay at home mom of 3..ages 24 y/o (Sharon), 16 y/o (Nikki), & 9 y/o (Tony). Tony is HFA (High Functioning Autistim). Sharon is schizophrenic, bi polar, ptsd...just to name a few of her diagnosis. I also have 2 Grandchildren by Sharon. Rayna is 5y/o & Riley will be 2 months old on the 12th of June. I'm married for 10 yrs to my "Pot `O Gold"...his name is Tony...we named Tony after him...no kidding
Anyway, I hope to get to know more about you & your Family soon! LINDA...aka MWN64...aka Tony'sMom
Cyndie, Welcome to the board.
I have found it to be so helpful and questions are always answered.
Diffenatly straighten that school out! My school tried to dismiss my sons HFA Dx. They tired to get me to agree during IEP meeting that it couldn't be as bad as Autism. My sons headstart teacher is a Godsend she helped me set the Elementary Speicial Services director straight. They even helped me find the Dr. to Dx him! I also wanted to add with my sons speech theripy we found he did horible if I was in the room. I don't know why he was beginning to speak at home first. But the ST would leave the door cracked so I could hear him. Before I started leaving we would have to bribe him with stickers and cheeseburgers just to get him to attempt a few words.
Nelle 2BSYBYS-I felt for you when I read your post.. I was there 18 months ago. My daughter had speech delays and received speech from EI for 6 months with no results. She then turned 3 and she started sped preschool with the district. 2 days a week/3 hours each day. She received group speech and group OT. 3 months after her 3rd b-day she got her diagnosis-ppdnos which is an ASD. This did not make a difference for her school. They continued with group speech until the speech therapist noticed that she talked at home and didn't at school. So she came in once a week to work with Katie at home...End of story..we moved from that God Awful place and are in a much friendlier environment. I think the reason your school will not recognize the autism is because they would be obligated to provide more services. At my daughter's old school they said they wouldn't treat them differently is they had autism or not..but that simply isn't true. I realize now that I should have taken them to due process because FAPE was not being met. PLEASE check out Wright's law website. You and your child have rights. He has needs that aren't being met! The school district needs to address these needs if they are impedeing his ability to learn. You might not get a one on one skills trainer, but there does need to be some sort of behavioral plan in the works. The key things that work where we live now is SAFETY- the fact that dd runs off and beats up boys actually works in our favor. I also wanted to let you know that some insurance companies and school districts
Best of Luck and God Bless, Renee hey everyone thanks for all the support it is great to talk about this with someone who understands. Hi there. Welcome to our support group! I understand your feelings with this, and my son isn't even dx'd. He just turned 2 and some things have been noticed by us in the last couple mths. I understand that tantrum thing, although luckily my son has mostly short tantrums and can usually be distracted by a sucker or something. I hate giving in like that, but it's so hard to watch him kicking and screaming and biting himself. Many friends and family say he's just spoiled and I should spank him and send him to his room. I feel that's too harsh. How can I spank my child for tantruming over irrational things? He's not doing it on purpose most times is how I see it. He has a special place in my heart and I could not hit him. This does not mean I let him get away with everything. He has very frequent tantrums, but only rarely are they severe and long. I feel for you going through such meltdowns for so long as you described. And it's even worse, I know, when others are around to judge you and criticize when they have NO understanding into the disorder. Everyone, except a few people, think ds is totally normal and he's just spoiled and shy and doesn't want to talk because his older sister talks too much. The shy one bugs me. Do people not know what "shy" means? It means they hide from others shyly or feel nervous meeting people and such. My son just could care less if children are there or not. THey might as well be ojbects in his way. If he is "normal" then what does that mean? These are some of my thoughts and to let you know we will not judge you or think anything you say or ask is silly or unjustified. We all have been feeling the pressures and are here to support you. Amber hello everyone-i am new to this and dont know where to start. my son Mason is 3.5 years old and has a brother is 5. mason has been in speach since sept and has not gotten anywhere with it. he has been accepted into special education at the elem. school starting in sept. his official diagnosis is (asd) autistic spectrum disorder. what is the difference between autism and ppd and asd? i am so confusted about everything i have been reading this board info ofr about 3 hours now. My son had speech social , sensory issues, allergies, food allergies. and the list goes on. he had major melt downs that last for about an hour-what is the best thing to do during this time-comfort him? he wont let me touch him? ignore it? it just gets worse. and when he has a meld down in public the looks i get like i am the worst mother in the world. i just cant take it and i just want to yell at them. let them live 1 day in my shoes. i have a lot of questions probably one for each topic on the board and i just dont know where to start. hope someone can help ease my headaches.
There are several links there that explain the difference between autism, pdd, and aspergers. They are worth reading too. Tammy dear karen and kellie- thanks for the great feedback. mason has been in speech since sept of 04 and somedays he did great and other days he just shut down would not look and her and would do nothing. I dont know if it was personality conflict or not. i put him in preschool in sept before he started speech and he cried the entire 2 hours he was there. so i dropped him out. i dont know what tech. she is using with him to help him with his speech- my one problem is he has been accepted into the school system starting this sept. into special education which has been a 4 month process. i gave them the diag. from the doctor and they said that they do not see it in him. they have him down for speech and developmental delay/social delay/ will his teachings be different at school if they dont treat him as being autistic??
).
You didn't mention that your son is getting OT, but if has sensory
issues, he really should have that in addition to speech.
Hi Cyndie,
My grandson was diagnosed at 4 1/2 this past Sept. with HFA.
The result was that we had no knowledge, and were pushed out the door.
We needed to educate ourselves and find the right people.
Everything we tried until Christmas was a write-off.
By January we had the right people in place (paying for everything ourselves) , and he is flourishing.
Our first speech path. was not great, and we found a second in January,
who specializes in communication skills. He has come a long way with
her.
We added a second speech Path, who although it sounds like an oximoron specializes in "speech".
He is now working with both of these talented women.
We had our meeting with the school this week, and our SP came with us to be the advocate.
When she laid out the plan she would like to see followed for
Kindergarten this fall, we were surprised ourselves at how much he had
progressed.
The school agreed to follow her outline in a special diagnostic K.
The secret is finding the right people.
Trust your own judgment.
Don't be intimidated.
A good speech path should send you home with homework.
Give you the tools to continue her work daily with your child.
First of all, welcome to the board! We're happy to have you join
us and feel free to ask anything you want. We're all at different
stages of dealing with our children's diagnoses ... some have been at
it a long time and others of us are fairly new. Believe me when I
say that you have found a place where at least some of us will have
dealt with or are dealing with what you're going through and hopefully
you'll find some comfort in that!
If you look at the site Tammy posted, you'll find that ASD and,
sometimes PDD, is an umbrella term that covers the spectrum of autistic
disorders ... from Aspergers to classic autism. It might help you
get more services for your son if you can get him a more specific
diagnosis than "ASD" since that can be a range of many behaviors ...
from high functioning to lower functioning.
What sort of things is the speech therapist doing with your son to help
ellicit communication? It seems that most therapists dealing with
autistic children will use a varied approach, incorporating PECS
(basically the use of pictures), sign language, and verbal
language. If the therapist isn't trying all three and educating
you on how to implement these things at home, then you should maybe
bring up the topic (in a nonconfrontational manner!) be/c autistic kids
often learn differently than children who are simply 'speech
delayed.' You may also want to look into behavioral training if
there is any available in your school district to help with
behavioral/social/learning issues. Many autistic kids also suffer
from delays in fine motor skills and occupational therapy is used to
address those.
As far as the tantrum issue, I can't be too much help there,
unfortunately, though I've read other parents here discussing their own
children's tantrums, so hopefully one of them can give some helpful
tips.
By the way, I have a 27 mo old son, Luke, who was diagnosed with
PDD-NOS (pervasive developmental disorder - not otherwise specified)
about a month ago. His major issues are with speech delays and
avoiding other children. He also has some 'stimming' issues (some
flapping, lots of spinning, some pacing). He usually doesn't
tantrum and if he does it's only for a few minutes -- except for last
night when he was overtired and overheated from a walk we took ... and
he screamed like a banshee in his stroller the entire walk back to the
car!! (But I think that was more due his being a hot, tired,
angry toddler than being autistic! 
) He was fine once we got into a/c.
Good luck and please feel comfortable asking anything about which you're concerned!
Kellie
Cyndie....
Welcome to the board! This is a great place to let out some of the
craziness that is our lives! My son is also 3.5 with an autism
diagnosis. I am no expert, but from what I understand ASD and PDD
are umbrella terms for several disorders: autism, aspergers, pdd-
nos, and a couple more I can't remember. We were just given the
autism diagnosis, but were told it might be changed to a more
specific term as he gets older. We have also had our share of public
meltdowns that draw all kinds of strange looks. I think in a way the
autism is a blessing to me because I now allow myself to ignore
them...they have no idea what it is like to have a child with autism,
so I can't worry about their opinions. Gavin's speech therapy also did
nothing for him for a long time. I finally decided to switch therapists
just to see if maybe it was a personality conflict and it made a
miraculous difference. He is improving so much now. So, if you like
your ST maybe ask her to try a different approach with him. I know
with Gavin there are just some personalities he does not click with.
His first ST thought he was nonverbal because he would completely
shut her out. Turns out he just didn't like her.....even though she
was a perfectly nice woman. Starting school has also made a big
difference in his speech. Having children to model has been great for
him. Great to have you here!
Karen
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