my first post here

[Italia]

My name is Laura from Italy,hi everybody!

My son Enrico,5 years old ,has been diagnosed PDD-NOS.Someone of you want to answer to some questions?

[peglem]

Welcome to Braintalk. Ask away, you'll likely get several answers to your questions.

[Italia]

The real truth is that I feel very lonely ,as I see my son has so many problems,and I sometimes feel as I'm not a good mother.

Enrico has 5 years old,and he doesn't speak yet...he does speech therapy,behaviour therapy......but I'd like to talk with parents who have children like Enrico in order to exchange experiences.....

[peglem]

I have a 12 yo daughter who is nonverbal and severly autistic. I believe I am a good mother, but autism sure does challenge that! Yes, it is very isolating, because other people don't even want to imagine what you're going through. My social life is mainly on this forum, where everybody understands and supports, no matter what. We've been there, or will be! Weekends are a bit slow around here, probably because all the kiddos are home from school, so they are otherwise engaged. So, tell me more about your son.

[Italia]

My son has 5 years old,(on may 25),he has been diagnosed PDD-NOS,do you know this kind of disturb?It means pervasive developmental disorder not otherwise specified.....He has some characteristic of autism even if he doesn't seem autistic....well he doesn't speak,he has ADHA,behavioral disturbs ,developmental delay......I understand what you mean when you say that you feel isolated,when I go out with Enrico and I see the other moms....I feel alone as I can't talk with Enrico, I can't go to the cinema with him,and I'm so sorry for my dear son........Do you understand what I mean?Tell me about your daughte..

[peglem]

Geez, its hard to sum up my daughter in a post. She communicates by a combination of augmentative communication, sign language and mom's intuition. She has 3 older siblings who, thank God, are great with her. She is hyperactive, although she doesn't have that diagnosis. She gets very sudden "meltdowns" (bursts of severe self abusive and aggressive behaviors) which makes it nearly impossible to take her anywhere in public because we can't keep her safe out there when it happens. She is very intelligent, although her level of functioning is very poor. She has fine motor problems and can barely write her name...she keeps trying though! She has chronic strep infections, which contribute greatly to her behavior problems and we have just recently begun to identify possible problems with her immune system. Everyone who has ever worked with her, loves her. She has this infectious joy that makes you forget the bad episodes.

Here's a Christmas picture of her:

http://i133.photobucket.com/albums/q...g?t=1168482676

and some from when she was younger:
http://www.msnusers.com/Allispics


The Christmas picture link doesn't work, but its on this thread:

http://brain.hastypastry.net/forums/showthread.php?t=7489

[MaryEvelyn]

Hi and welcome to our little family!! :D My son is 14 and I realy understand what you meen by being isolated that is why I love this place. The people here know more about my life than my family does. They will suport you and give you a nice big sholder to cry on. Sending out maga (((HUGS))) you are a good mom just you are dealing with more stuff than most mom's.

[Italia]

allie is soooooo beautiful!:) I know what you mean when you say it's difficult to describe our special kids in a few words!No words can describe the love they give us,no words can describe all the things they teach us every day.....

Enrico is not violent,but he is not able to focus his attention on something for more than few seconds...except for teletubbies.....he can spend hours watching at teletubbies......but in the meanwhile he can do a lot of disasters....Does Allie go to school?

[Italia]

Hi MaryEvelyn!Lots of hugs from Italy!Tell me about your daughter!

[peglem]

Yes, Allie goes to a private, special education school. She can read-at about a 2nd grade level, as near as we can tell. It seems like she always knows so much more than she can show us. She also went through the Teletubbies obsession. Also Raffi. She's been watching the "How the Grinch stole Christmas" video since she got home from school on Friday. Her old tape got broken so she hadn't seen it for quite awhile. I found a copy at a thrift store on Friday and she's acting like she's found an old friend.

[LIZARD]

Hello, Laura! :)

Welcome to our family. :) Something about your post is familiar. Have you written about Enrico before, maybe on another forum? I seem to recognize you from somewhere. :)

My son, Drew, is 12 1/2 now, diagnosed with autism 10 years ago. He's doing very well now, but I still have concerns for his future, so I keep researching and digging for information. There is always something to learn in this "business." :rolleyes: Please feel free to give us any questions we might be able to help you answer.


((((((((((((((((((((HUGS)))))))))))))))))))),

LIZARD :)

[Italia]

I can't show you a photo of Enrico because,I'm a disaster with PC.I've bought my first PC one month ago and this is the first day I'm able to use it........it has been a hard work!

Enrico goes to nursery school,even if it's more the time he spends at home than at school as he often gets ill too....He has a personal teacher and a very brave girl who helps him for toilet and lunch.

Does your husband or partner helps you?

[Italia]

Ciao Lizard!

Yes...I posted on epilepsy forum as Enrico suffers of epilepsy too......Lots of hugs to you from Italy!I used a PC at work so I rarely had time to post on brain talk.....but now I've my own PC...I'm VERY CLUMSY with it.....but I hope to improve...........ah ah!And I want to talk with all of you every timeI can.....

[milivica]

Hello and welcome! There's so much to say about my son, I wouldn't know where to start. He is autistic, is 11, is 100 pounds and 5'4", the things he never does is sit still and be quiet.

I hope you make lots of friends and get much support and companionship by coming here. This forum is loaded with the most wonderful moms anywhere.

Ciao!
Milivica

[Mother's Heart]

WELCOME LAURA! :)

I'm cj. Single mom to two: my 14 yr old son has autism, etc. 16 yr old daughter has visual impairment and an unidentified muscle problem.

I don't know how to describe in a short statement either. I homeschool my son, who has been nonverbal all along. In the past couple of years he has been released from being unable to communicate in words by learning to communicate with written word. We're exploring a whole new world...getting to know him. He still struggles with impulsiveness and aggression, sensory integration things, and has a lot to learn about living in the world, but the communication makes a huge difference in prospects for learning and living. In keeping with Mili's data, I'll comment that my boy is 5'10" at least and I suppose planning to keep growing. :)

Okay. I'm sure I could talk on and on...cause I like to compete with Mili for verbosity but I'll stop---for now. :D

Welcome to the board. I hope you can stay with us.

peace,
cj
\o/

[Italia]

Mother's heart!Ciao!

I'm very inerested to the story of your son ,as my son Enrico doesn't speak yet and he's already 5 years old.I've never heard Enrico telling "mamma" to me.
He just communicate with signs,sounds and expressions....I'm starting to think he will never speak....

Tell me the story of your son!;)

[Mother's Heart]

Laura,
It's a complicated story but I tried to post about it here a few weeks ago. Here's a link to that thread.
http://brain.hastypastry.net/forums/showthread.php?t=4173

FAIR WARNING: it's a loooooooong one. Get a cuppa to drink while you read. :)

I think I could talk about it forever, it's so exciting and fascinating (at least to me)

cj

[Mother's Heart]

Don't give up on him progressing. Don't give up on his communication, and don't give up on other areas either. I think all those people who say at "x" age the kids are done learning are so wrong!.

[Mother's Heart]

I've never heard a sincere Mama either....but this past month my son started 'writing' mama in my daughter's hand when he was complaining about her to me. :D :D I'm thrilled.

"I love you" isn't very high on the list either but he has stated he loves his sister (who would've EVER known, in the midst of all the hitting and ugly words???). I'm still waiting to hear he loves me.

He DID say "I love you" to me once. In fact, it was exactly twelve years ago today. (He spoke until he was three, mostly echolalia and noun labels, but verbal speech) He actually came up to me, crawled up on my lap, and very clearly said, "I Love You". While I was trying to catch my breath and come out of the shock he reached behind my shoulder and pulled to him the Barney printed blanket that I had behind me. Oh. I realized he was really asking for the Barney I love you blanket instead of talking to me.
I decided to accept the 'I love you' anyway, since I knew I'd probably never hear it again. I was right.

[Isabelle]

Welcome, Laura!

I am the very oldest mom here.

We developed many games in which he had to answer. Identification games and answering his name,address,phone number, etc. he has excellent memory and got good. Only once asked a question. Teaching the names of his body parts and then after pointing at them, asking what's it? we forgot the belly button :D

Enrico can't talk to you, but believe me !!! He is in tune with you, so talk to him... Hey! sing to him!!!! You are Italian, sing! and watch his eyes, his face, sideways....I used to sing and would ask him, smiling, "Do you like momma singing?" I did that thousand times, finally he answered,"Yes, Please" and then I ask him to sing and he sang. You can do it, is fun!!!!

Another times, express your thoughts aloud, he is listening, believe me!

.having an mute autistic child is not necessary to be all doom and gloom.

[Italia]

Thank you Isabelle and thank you mother's heart...you really make me feel better!Of course I will never give up with Enrico!He is my life...I always talk to him,I sing a lot of songs and I dance with him.....And he likes a lot!

Every day,before he sleeps,I tell him:"Mamma loves you a lot",and he smiles,I know he understands....I want him feel loved....

Thank you I hope we'll become friends!:)

[Mother's Heart]

Isabelle, singing is SUCH a good plan. And voicing your thoughts out loud and commenting on your actions. (I'm mopping the floor. It's dirty. I'm making it clean with this mop and the water and soap etc Anybody remember "this is the way we mop the floor" song? I sure sang that alot...poor kid...I can't carry a tune even with many buckets)

Anyway..about the singing: My son didn't respond at ALL to speech, even as a little baby. However, if music were involved you had his attention. I could call his name, tell him to come eat, try to get his attention for any reason with words until I was blue in the face with NO REACTION, zero acknowledgement that I was even there. But, if I embedded what I said in song, singing it to him, or even using a sing-song rhythm, then he got it instantly. I also noticed, when he was ten months old and I was trying to be sure he could hear, that he would not turn to my voice speaking but if a jingle or background music came on the t.v. he would instantly turn and crawl to the t.v. to watch.

Something else which I thought to do from a young age, and for which I'm really grateful now, was to pay attention to how I spoke to him.
I tried to speak to him on different levels.
1. sometimes I used telegraphed speech, short phrases, only the most essential words, and paused between to allow him to process.
2. other times I used phrases that were expanded just a little more than what I already thought he could certainly understand for teaching purposes.
3. and others I spoke in normal speech rate and length of phrases.
4. I combined sign language and speech whenever I could

Another really important thing I realized somewhere along the way was that he had a very long delay between any stimulus and his response. It took him a long time to process speech, then it took him even longer to organize a physical response. Videotaped him when he was almost 5 yrs old with the Speech Therapist giving him simple commands, like "stand up", for example. He would sit there for a long time, typically 32 seconds but often up to 1 min 38 seconds. There seemed to be certain magic times for him. I imagined the information going through his brain on a pre-set 'loop' and sometimes it had to loop through more than once before the response came out 'intact'. It was weird looking....when he responded it looked for all the world like the command had just been spoken a second before.

This delay has been a source of frustration and limiting his progress through the years...because it's so hard for adults to wait long enough for him to be able to respond....and other kids NEVER wait. NO immediate response makes people think he didn't understand or he doesn't know the 'answer' or can't do it, or doesn't want to do it and so they take over and do it for him, or walk him through it. So, he never gets the chance to do things independently. Though I saw this lag time gradually decrease, occasionally this is still a bit of an issue. Sometimes it just takes patience to give him time to do things. Often the more complex the task the longer it takes.

I'm rambling here. hmm. I also require patience. thank you.

One last thought: When I started homeschooling Donovan I found that he couldn't do a multi-step job if we broke it down into steps. but if he knew what the final goal was, and was self-motivated to accomplish that, then he could figure out what was necessary and do it. I'm not sure if he needed all the years of step-by-step training to reach that point or not. He also couldn't/wouldn't do an arbitrary task. The skill had to be imbedded in something functional or meaningful to him. This has changed slightly now but he is still likely to get irritated with you for asking him to do something just for the sake of a school task.

I'm gonna stop now because I can't even remember what started me off on this tangent.

[peglem]

Another really important thing I realized somewhere along the way was that he had a very long delay between any stimulus and his response. It took him a long time to process speech, then it took him even longer to organize a physical response. Videotaped him when he was almost 5 yrs old with the Speech Therapist giving him simple commands, like "stand up", for example. He would sit there for a long time, typically 32 seconds but often up to 1 min 38 seconds. There seemed to be certain magic times for him. I imagined the information going through his brain on a pre-set 'loop' and sometimes it had to loop through more than once before the response came out 'intact'. It was weird looking....when he responded it looked for all the world like the command had just been spoken a second before.

This delay has been a source of frustration and limiting his progress through the years...because it's so hard for adults to wait long enough for him to be able to respond....and other kids NEVER wait. NO immediate response makes people think he didn't understand or he doesn't know the 'answer' or can't do it, or doesn't want to do it and so they take over and do it for him, or walk him through it. So, he never gets the chance to do things independently. Though I saw this lag time gradually decrease, occasionally this is still a bit of an issue. Sometimes it just takes patience to give him time to do things. Often the more complex the task the longer it takes.

.


This is soooo important and something I often forget. Usually people assume Allie doesn't understand or doesn't know because they never get a response, because they don't wait for it. She'll stand there like she didn't even hear you, but give it 30-60 seconds and she's there- unless of course she gets distracted by something else (like the person speaking to her moves on to something else)

[Mother's Heart]

oh, I remember. When my son finally had a way to talk to me he explained his violent reaction to my trying to read a book to him: "you are reading too loud for inside the house and it hurts my head" I promised to try to read more quietly and to pad the table we were working at and he listened patiently through the whole book.
He has explained many of his meltdown as being triggered by loud or irritating sounds. Initially he called it 'woo woo' noise. Machinery, the airconditioner, my voice, his sister's voice, all SORTS of things make an unbearable noise for him and he just can't take it. That's the reason he likes to go sit in the car outside. According to him he likes it there because all the "wooo noise is inside the house". I'm learning to speak quietly as he always resists school tasks if I'm talking too loudly for him.

I suggest experimenting to find out what matters to your child when it comes to interactions with people. I think we parents do this naturally, but sometimes there are things we might not think about, at first. Eventually yes.

[Mother's Heart]

She'll stand there like she didn't even hear you, but give it 30-60 seconds and she's there- unless of course she gets distracted by something else (like the person speaking to her moves on to something else)

oh, yeah. that's something else:
for years Donovan would lose his ability to respond if the other person moved during that response delay time. If you move your hand across in front of him, or touch his back, or prompt with something else. He still gets frustrated with me if I rephrase or make another comment while he is trying to get to his response.

[Isabelle]

mother'sheart, you observed so well,you know well your children. That's what I did to my son and I thought everybody was the same way, observant, sensitive person.
It took me a long time to realize that was not the case. That slowness in responding, typical among SOME our kids, made some group home staff angry, so there were pushing, pulling and physically forcing him to move to the point of making him cry and of course to use words that belittle him and he would repeated them back to me.
Now, compound this natural delays with tranquilizers that would made it into total immobilization, wouldn't it be cruel? These people, supposedly be "experts" were literally tormenting, torturing these defenseless disabled men!!!! It has many names but basically is called drug-induced parkinsonism, then I learned that was the final goal, the reason? To make easy to care. They wouldn't make any demands on staff :mad: :(

I am still hunted by the memory of that autistic Hindu or Sick child burning alive in a school bus because he couldn't move and the driver couldn't get him moving......