Pervasive Developmental Disorder not otherwise specified is what my son was diagnosed with.

Elzette - posted on 01/29/2009

Hi Antoinette - thanks for the reply - so good to hear that there are other mom's going through the same scenario's. We have made our self so isolated from "normal" life due to the tantrums and outbursts - although it's a lot better that what it use to be - i don't want to discuss with everyone my reasons why we don't always want to have a huge gathering with other families and kids. We tried when we first arrived in Australia - but some how it always ended up with my son in tears - feeling he's being teased - or interpreting social cues wrong and ending in emotional dis pare for him and us.

With time its getting better and also with us learning what works and what don't works - like you said - cutting out people around you and focusing on your child and forget about what other people think - they don't know your child. I'm learning to do what works for us as a family and not to worry about what other people might decide is normal for them in there world. We have to plan and approach things differently to what other families would do but we have learned to have fun. I know my child is intelligent and has a lovely nature, that somewhere deep within there is a dark cloud that want's to take over some times - but after every storm there is always a rainbow - and we live for the rainbow moments.

In a sense i'm glad i have a diagnoses now - before i was trying to change him to be like other kids his age. People was trying to give me there advise of how to discipline and do things they would do with there kids. I know now that they were wrong and we were right following our gut feeling and heart on how to do things. He is different but he is blessed in so many way's - a little Einstein that with help and thanks to other mom's with the same stories and experiences he will like so many other Autism spectrum disorder kids have a bright future because we believe in them

Antoinette - posted on 01/29/2009

Well Anne,

I live in hope that he'll be ok, he's got great support at school, but there's just no pushing him.  I have learnt to just let him go at his own pace or else he digs his heels in and we just have to wait for him anyway.

Well school starts on Monday here and I am going down to see the class lists today.  So I'll have the weekend to prepare him for his new class, teacher etc. and I'm certain Monday will be stressful for us all.  BUT we'll survive:)

Antoinette x

Anne - posted on 01/29/2009

Hey Antoinette,

My twins graduated.  My 16 year old son is still in HS.  He gets good grades, he just wont do the homework. This has been going on since the 7th grade.  We have done everything, the IEP meetings, emailing with the teachers, its been a battle.  I know what you are going through.  He is aspergers and he can be a stubborn mule LOL

Hugs,

Anne :)

Antoinette - posted on 01/29/2009

Oh  love this blog sooooooo much.  I no longer feel that I am the only one in the world experiencing all this. 

Anne I'm so happy that your children all graduated, because my Alexander absolutely has no interest in learning to read, write or do maths.  He just (at 10) doesn't see a need for it.

As far as temper, rage outbursts go Elzette they do improve.  My friends used to despair when we were out and about with our children because Alexander was guaranteed to have a major temper outburst.  I used to get so embarassed because of the looks and comments that were made by strangers, but when I started to just focus on my son and blot out everything else I was able to bring him down again.  He used to seem really confused and upset afterwards and a good cuddle and plenty of reassurance went a long way.  At his age now we maybe have one or two a month, and thankfully they happen at home more than when we're out.

Well until next time.

Antoinette x

Anne - posted on 01/29/2009

Hi there,

I have 18 year old twins (daughter and son) who were diagnosed when they were 9 with PDD-NOS.  I also have a son who is 16 who was diagnosed Aspergers when he was 10.

When my twins were 2, they really weren' t talking.  When they were 2 1/2 their pediatrician, whose subspecialty was developmental pediatrics suggested that we get them tested by the school board. They were originally diagnosed with expressive/receptive language delay and my son ADHD. IEP's were done and they went to the school paid for by the Board of Education in New York.

I would write a really long story, but I will make it short, after our lives were at a standstill for 3 years, my twins were admitted into a residential treatment center when they were 9.  The director of that center happened to be a neuropsychiatrist with a PDD son.  That is when my twins were diagnosed.  If it were today, they would've been diagnosed early like most of the children are.

Both my daughter and son were in self contained classrooms with other PDD children througout school.  They are actually have IEP services until they are 22.

My son was able to go back to the school to attend the culinary program- he likes to cook. My daughter didnt want to go back and is on vocational rehabs waiting list.  She works in her dads office 1 or 2 days  week doing filing.

My daughter still has a speech problem- phonologic disorder- she wants nothing to do with speech therapy anymore. She had speech in school from when she was 3 until she finished High School.

All 3 of my kids really aren't all that sociable.  My daughter has one friend from school that she talks to on the phone maybe once a week.  My boys have always had maybe one or 2 friends.  When they are all home, they like their computers, 2 of them like to read.  Their dad takes them out to different places.

My twins did graduate HS with their graduating class.  If you wouldve asked me 10 years prior to that if I thought they would finish school, I honestly wouldn't of been able to tell you, my answer would've probably been no.  All of the other kids they went to school with graduated as well.  My daughter even went to the prom :)  So there is hope :)

Hugs,

Anne :)

Cynthia - posted on 01/29/2009

Hey there ! The diagnostic category pervasive developmental disorders (PDD )refers to a group of five disorders characterized by delays in the development of multiple basic functions including socialization and communication. The pervasive developmental disorders are:



Autism, the most commonly known,

Rett syndrome,

Childhood disintegrative disorder,

Asperger syndrome, and

Pervasive developmental disorder not otherwise specified (PDD-NOS), which includes atypical autism.



Parents may note symptoms of PDD as early as infancy and typically onset is prior to three years of age. PDD itself does not affect life expectancy.



There is a division among doctors on the use of the term PDD. Many use the term PDD as a short way of saying PDD-NOS. Others use the general category label of PDD because they are hesitant to diagnose very young children with a specific type of PDD, such as autism. Both approaches contribute to confusion about the term, because the term PDD actually refers to a category of disorders and is not a diagnostic label.



I think this is a great example of how indivual and unique every child is :0) and that we do have hope ! My ten year old has this same diagnoses but as you read before this diagnoses confuses me because it also says it's not a diagnostic label.But my son has improved greatly but not as much as your little one.And he does from time to time get anxious.He is more verbal but isn't able to tell me what he has done plus he gets a little more confused between spanish and english.But it's stories like yours that help me pull threw and be more positive.



Thank you,



Cynthia

Elzette - posted on 01/29/2009

My son is 5 and was diagnosed with PDD-NOS this December. We were a bilingual family and having speech delay did not seem to worry the professionals to much. It was only since we immigrated to Australia that more people commented on his speech delay and we decided to cut down to only one language at home - English. Social skills was a main concern to me as my son always seemed alone and not making any friend. It was only since he started preschool that i became even more concerned about my son - group times he would be shaking his head or flapping his arms not able to sit still or concentrate but give him something of his peak interest - lego, train sets or any building blocks and he will be busy with it for hours.

He does not adjust to change very well and we have to tell him the order of events for the day for him to be happy and relaxed about what will happen during the day.

He has a very sensitive and loving side - but can also be a very difficult and stubborn little boy with anger outbursts that we try and prevent before it happens. We got so far as to get him to recognize when he is getting agitated or stressed and he knows that when he feels like this he can have a time out in his room - even close the door for privacy and color in or do whatever he wants to until he can calm himself down. This works very well especially with a little sister that knows which buttons to push to get him all worked up. It has taken some time but at least we are getting to the point of him being able to recognise when he is agitated and need to have time out to calm himself - anger outburst and tantrums a lot less than what it use to be when he was 3 years old.

He is currently in Grade 1 and seems to be very happy and adjusting well - school has been amazing in offering a lot of support.

Wish all the best for all your children

Antoinette - posted on 01/27/2009

Hello there,



Well my 10 year old son was finally diagnosed last April as PDD-NOS.



Like everyone else I noticed his speech wasn't where it should be at the age about 2. He went to speech therapy which did help.



He was so different to my older son. He hated us reading to him, never was interested in nursery rhymes or children songs. Refused to attend other children's birthday parties, and used to scream blue murder if we even suggested he have a party of his own.



He went to a Kindergarten and it soon became obvious that he just didn't need other children around him and was happier playing on his own. The kindergarten assured me that I wasn't to worry because all children develope at their own pace.



I noticed that he had what I termed "fixated play" and for the first 7 - 8 years of his life all that he was interested in or played with were tractors. We have numerous books (children's and adults) about tractors and he can tell you anything you might want to know about them. Even at the age of 10 all he wants us to get for him is an old tractor that he can restore!



Well he is in a main stream school here in New Zealand, and it's been great - socially he's better, even though he never wants to go to other children's homes to play or have anyone over to play here. Up until now there has been no bulling and the other children just accept him for who he is. Educationally he is illiterate and has trouble retaining info.



I have been really down in the dumps about him at times and worry myself sick, but you know I'm sure he'll be absolutely ok, and live in hope that something will just "click".



At the end of the day I just want him to be happy, and grow up to be a well rounded adult with a passion for life, who knows that we love him and will always be here for him.



Good luck to all of you with PDD children and I hope you all fare well.



Antoinette

Hibak - posted on 01/16/2009

Thank you all for your stories. you have given me hope for the future. My son like i mentioned has made progress and I am so greatfull for his sucesses. This diagnosis (PDD-NOS)confuses me because every child displays different symptoms. For example my son didn't have any sensory issues, he did not flap his arms, he was always affectionate and loved being huged and cuddled. My sons, red flags were that he had no social skills with other kids and no language. We noticed at age two that he loved TV and could sit there for hours and developed what i would say an addiction to TV. He would repeat phases of diego, little einstiens shows.

We try to limit his TV watching by having him do some coloring, tell us stories by way of him looking at the picture of books. He actually enjoys story time and ironically thats what got the this whole situation started.

Please feel free to tell me what therapies work for children so i can try and ask for more help at school for him.

Thank you,

Hibak Farah

Beth - posted on 01/16/2009

I have a daughter who turned 3 in October who was diagnosed with PDD when she was about 34 months of age. The developmental pediatrician would not specify what type of PDD she had, but felt that it was not specified since it was not typical autism. She's very social, though she has some differences in how she socializes and misses a lot of the social cueing. She's doing wonderful in a public developmental preschool and goes twice per week. In addition to the delayed language, she has sensory issues and ritualistic behaviors. She was late on all her milestones and at 24 months she started the Birth to 3 program after being referred by her pediatrician. At 24 months they screened for autistic spectrum disorders and she had a lot of "red flags"/"warning signs" which included arm flapping, toe walking, not being able to point, not looking at what you pointed at, not understanding any language including responding to her name (there was no receptive language at that point), she didn't say any words, she had sensory issues and was developing some what we thought was OCD-like behavior. She also didn't look strangers in the eye at all. She was fine with myself and my husband, but outside the family there was no eye contact.



At age 2, she was seen by a speech therapist twice a week, an occupational therapist once a week, and a developmental therapist once a week (each for an hour). We started doign sensory integration therapy and we were shown how to do things by the therapists so we could continue therapy on our own time. Sensory integration therapy did wonders. Huge wonders. Within a week time we saw changes. Within a couple months huge changes. We got on a wait list to see a developmental pediatrician (5 month wait list, but to see one of the top in the state was well worth the wait). We had a few visits before getting the diagnosis of PDD. I think it's very mild PDD since she is very social, but her language is about a year behind. I think that part of her brain is just developing slower, but at this point she's not falling further behind so we are very happy with the progress. She has an amazing developmental preschool teacher through the public school system. There is also a speech and occupational therapists on staff that pull the kids out to work with them individually for 30 minutes each of the days. Twice a week for 2 1/2 hours at age 3 is a lot. I am happy that it is only twice per week because that means we can do play groups and story time at the library and just let her be at home and play and be a regular kid growing up. But she does love the school as well. All in all, life is very good.

Michelle - posted on 01/15/2009

Thanks for sharing you stories. My son went through many diffrent diagnoisis before finally being diagnosed with PDD-NOS when he was 8.

Like your children he was unable to talk more than one word at a time by the age of three. He did not respond when talked to. He also had no interest in children. He wanted to spend all his time with adults. He had been in speech therapy from the age of two and it continued untill 5. Then when he was five he recieved speech therapy through his school. I am happy to say when he was 8 he was able to discontinue speech therapy as they felt he spoke as well, or almost as well, as other children his age.

He is now almost 14 and finally he has a group of friends and even has a girl he is interested in. He is in a special needs program at his school and is doing well in that. It has not been an easy road at all, but one well worth it.

Christie - posted on 01/15/2009

My son had that diagnosis when he was 3 years old.  He did speech thearpy and was in a special needs class for kindergarten.  Now he is 7 years old, in a general education classroom with the support of a special program at his school for social situations.  He no longer has ST because his speech is great.  He attends Cub Scouts and gymnastics once a week with no problems.  Fits in with the other kids for the most part other than some quirks that he does here and there.\

I am sure your son will do just fine and function in the mainstream.

Jessica - posted on 01/15/2009

Hello!  My son also has a diasnosis of PDD-NOS.  He has been receiving speech therapy since he was 20 months old (he's now 3 1/2.)  When he was diagnosed the docs recommended between 20-25 hours of school/therapy a week.  The therapy has done WONDERS for my son.  He can sometimes hold a conversation, for the first time ever over the holiday he expressed interest in someone else, and the OT is doing a wonderful job of helping him keep his body under control physically.

At the age of 2 my son was not speaking- he only had 1 or 2 words and that was it.  He didn't speak in school, couldn't tell me what he did, or if he felt sick.  He couldn't even shake his head yes or no.  At 20 months, his language tested as that of an 8-12 month old.  Now, almost 2 years later his language tests as age appropriate.  His conversational skills are still developing, but that has to do with his social skills.  He talks all the time at school and can tell me what he has done while he was there.  He is making friends, and while I still need to be vigilent, is becoming more in control of his body (due to sensory problems, we had a lot of issues with him being too physical, both with himself and with other children.)  People rave about how far my son has come.

I certainly relate to your story.  While I don't know if the PDD-NOS ever really goes away, I know there is hope that kids with PDD-NOS will be able to function in mainstream society.  That's why we are doing such intensive therapy now, while my son is young.  The doctors said that with a lot of therapy now, he will develop coping skills and that he will grow up to be a 'normal' boy with a few small 'quirks'.  And I believe that this will happen for my son.