my son has pdd-nos

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Rebecca L - posted on 12/19/2012

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Hello, My son turns 3 in Jan. he has been diag, with pdd/nos SID sensory intgration disorder,I have tried for months to figure out what was wrong, we had family and friends tell us we are bad parents,Because of his acting out, I will be the first to admit its horrible...I feel very alone at times often find myself yelling at my little man, Only later when he is calm and gives me that look or a big hug... Thats what makes it all worth while...The fight for him and others like him I am his voice and his life line....Thanks for sharing i dont feel so alone now..

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Christine - posted on 04/13/2013

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@Gill
I feel so bad for you. We had early intervention for our 8-yr-old starting before the age of 3. I literally got down on the floor with him for at least 3 hours a day - every day for over 2 years. I didn't think he heard a word. We went through those exact same things as you did for a good 2 to 3 years once I started working hard with him. Eventually I got through and he is even able to tell me how he was feeling back then.

I am not sure if you have tried these things but maybe it would still work with your 8-yr-old son. I am so familiar with the violent rages, we no longer see them at home, but oh do we at school. We finally have a promise with a new school and a new behavioral program we are going to try out starting next week.

You got to be careful with the school as depending on where you go, what state, and what county, your child may be looked at as a delinquent and they call the cops, then the county wants to investigate your home and run your life, I am just barely getting out of this situation by switching counties.

It sounds like you need a behavioral specialist working with the school - or working with you at home if home schooled. CESA was an excellent resource as well as the DPI, insist on what you want until you get it.

Does your son have any additional issues besides the NOS-PDD?

Gill - posted on 04/10/2013

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My son, 8 years old, was diagnosed with PDD-nos. I spent the last 4 years going to DHMC where they told me he had ADHD, OCD and ODD. When I suggested he might have Autism they looked at me like I had three eyes. They said I could go to Yale for a study and refused to even have him tested. We went through him head banging into furniture so hard he would be crying and still doing it, we'd have to pry him away and hold him till he'd cry to sleep, took him for MRI cause I was worried about brain damage. He wouldn't show any interest in learning to use the potty and still to this day poops and pees his pants, not as offten as he did but for being 8 and still having accidents. When he got to pre-school he was assigned a 1 on 1 aid, they'd have to make space circles around him that nobody could enter. He has violent rages where he will throw, smash, or hit anyone or anything in his path, including hitting himself. He thinks I hate him. I am almost always on him about one thing or another but I feel that if I don't hold him accountable for even the smallest thing he will continue to do it or get worse. I tell him how much I love him and do try to find anything I can to praise him about. Scocial situations basically suck. If and when we try to go out for dinner it almost never ends happily. My 2 year old is starting to mimic his behavior not because he has PDD-nos but he thinks thats how he is suppost to act. We have done a great job of getting him on an IEP at school and some respite every few months. But I feel like I am at an emotional dead end. I am breaking out! I am on edge all the time. I worry every time someone yells that my son has done something, no one truly understands in my family or with my friends how challenging his behavior has made life for him, his lil brother, his father and myself. I hate it when something happens at a playground, he took off running yelling that I wasn't his mother! Its not like there is a balloon tied to him that says PDD-nos. I am hoping that I can teach him enough that he can live alone as an adult but I worry that come 18 he wont be going anywhere but back to his room. I worry that my youngest son will eventually have myself and his father to care for as well as his big brother. I know i shouldn't dwell on the future like this but the way things are going......(whew) I am loosing me with all of the crap happening, and I feel scared for my son who has to live with this. How do you all keep your heads on? I have so many things to write to share I just don't know how, almost feels better reading the other posts and seeing that we are not alone that there are other people out there who are raising children with PDD-nos.

Becky - posted on 01/27/2013

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Not sure where you are located, but if you try meetup.com, you can find groups in your area. Also, some groups on facebook, too. I started a group, but with limited success. Good luck!

Christine - posted on 01/18/2013

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I thought I was alone, I'm thinking that our children are just not "socially ready" for the school environment. They do not care about our children as we do. You cannot "force" one of "our" children into a corner, they will react unexpectedly.

After my 8 year old being removed from the school and privately questioned by the crisis intervention at social services at the courthouse - I've had enough. I am not sending him back to school.

It is my understanding that home schooling is legal in all 50 states. I am sick of being accused of maybe being the cause of these emotional issues.

Legal help is unavailable as to no job and legal aid wouldn't help - simply amazing.

Jennifer - posted on 01/17/2013

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i am interested in meeting other moms and kids with pdd nos as well. I have an 8 y/o with that. I live in rochester ny

Danielle - posted on 01/16/2013

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My stepson is amazing when he isn't "Zoned" out or having an episode. He is very smart and observant and very caring when he is aware. These past 2 months its like we are raising a different child. We longer know how to handle his episodes, we are getting desperate. His school is good in keeping us informed with everything. They are open to suggestions but honestly we are running out of them.
We can't do home schooling as some has mentioned nor do we want to take him out of the social setting as we believe this can help his social interaction.
We have tried the normal disciple for his hitting and kicking but nothing seems to get through to him. Has anyone has these problems and have suggestions to help?

Christine - posted on 01/16/2013

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We live in a county which has become involved - thought Human Services. They are going to help us help the school to get the properly trained people in the school to help my boy deal with the problems which occur there. He is good at home, but not at school. It is the school's responsibility to get the resources they need to help your child - don't let them tell you they have no access to resources as it is the law. The county human services here are being wonderful in helping my boy deal with social situations, maybe they can help you too :)

Christine - posted on 01/16/2013

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Mine is 8 and diagnosed with the same. He has learning disabilities but is a math whiz. He has some speech problems, but we can understand him. He builds skyscrapers on minecraft and I can't even understand that game LOL. He is a great kid - very loving and compassionate. School is another story - kinda like Jekyll/Hyde - cops involved - destroying property, non-understanding by the school that my boy needs special accomodations at the school - a special person who knows how to prevent an escalation - kinda like me and my husband :)

We are thinking about home schooling as I know this phase will pass, just like all the others we have overcome. You would not know he is autistic by having a conversation with him, however at 3 years old it was very obvious. He didn't even begin to speak until after the age of 4 but he has come a long way and we are very proud of him :)

Danielle - posted on 01/16/2013

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Hi Rachel. My stepson has PPD NOS he is 7 years old. He goes to school full time, but recently he has become more aggressive with hitting and kicking, even throwing things. We are stressed to the max and would love any advice or tips.

Rachel - posted on 01/14/2013

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Hello ladies,
I'm a single mother of 2 living in Salt Lake City, Utah. My oldest has PDD-NOS, youngest has Autuism and a developmental delay. I'd like to offer tips and receive tips if anyone is interested.

: ) Rachel

James - posted on 12/17/2012

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Hello,
Why is this just for mom's? My son's due to turn 5 this month and has been diagnosed with PDD NOS.

Rebecca - posted on 10/25/2012

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I have a 5 yr old boy that has just been diagnosed with pddnos. Its so hard to get his school to understand and they believe he is just a behavior problem so now they have him on half days. He must come home at 12:30 while his older brother gets to stay at school and ride the bus home. anyone else having problems like this?

Toni - posted on 10/23/2012

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My son is an only child too! He loves two things, hotwheels cars and pokemon. When he sets up a track, he will spend hours and hours watching the cars go around. And when he plays pokemon, he also gets lost in that too. I have to make sure I stop him, or it wouldn't even eat or drink. And absolutely no one understand, not family or friends, which leaves for a very lonely life. He also hates school. So we are trying to figure out what the right placement for him should be. Right now, he is in a self contained classroom of 8 boys. I would love to see him mainstreamed for some classes because he is so smart and I fear he will begin to fall behind but the stress of him moving is just too much for him right now. I am feeling very helpless. I want to do more for him but then just not sure what the right thing is right now. One day at a time, I guess that all we can do.

Lara - posted on 10/23/2012

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I have a son with pdd-nos too. He is an only child which makes it easier or harder, sometimes I just dont know which. He is 8 and very into trains. It is pretty much an obsession. He used to love Thomas but recently he has started with the model trains after visiting a huge train museum and seeing the control room. He can sit in his room for hours and just watch his model train go around the track. I find it hard sometimes to relate to moms who have typical kids. They just dont understand so I too am interested in discovering friendships with other moms in similar circumstances. I am glad to live in this time where internet connects me with so many wonderful moms!

Toni - posted on 10/22/2012

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My 12 year old son was diagnosed with PDD-NOS today. I feel like I just got kicked in the stomach. Help!

Ashley - posted on 07/05/2012

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it is not through a school program and medicaid does not pay for it either. Also have you looked into weighted vests for your son? They help to focus the child so they are not all over the place. My son uses on when he goes to OT & ST. He also sleeps with a weighted blanket at night so he doesn't wake up every other hour.

Ashley - posted on 07/05/2012

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Sue, my son also bangs his head. The doctors told me to just hold onto him tight and whisper calming things in his ear, if I can't redirect him so he doesn't hurt himself. Now that doesn't work all the time but it has worked some for us. As for Hippo-therapy, I called around to some of our local horse stables and horse schools and found a lady in my area who owns one and does an hour every week or every other week whenever I can get my son out there for free. She is only going to start charging me when he starts learning to ride. Call around your area, tell them about your son. The worst they can tell you is no.

Sue - posted on 06/29/2012

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Where do you get hippotherapy? Is that through your public school program? It does sound wonderful...

Sue - posted on 06/29/2012

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My almost 3 year old son was just diagnosed PDD-NOS a few weeks ago but I feel he is very mildly affected and seems to b improving as he gets older. He is a year behind in speech, just now speaking "jargon" has vestibular issues making him fidgety and does not make eye contact with strangers and certain kids. He overwhelms easily as well. He is going to start public pre school at 3 full time for speech and OT. I am sometimes not sure how to handle his tantrums when he bangs his head and hurts himself. I try to redirect him to go bang his head on a pillow but usually he just collapses to the floor and bangs his head when he doesnt get his way. Hope he grows out of it.

Ashley - posted on 06/08/2012

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Hey everyone! My daughter who is 4 has PDD. She was diagnosed when she turned 2 1/2 and my son is 3 1/2 and has a little more severe form. He is Autistic, has sensory processing disorder, ADHD. We also just found out that he is missing a chromosome that the doctors said could be why he has it a little worse than his sister. I could never have imagined that both my children have this. He also has alot of behavior problems that we are trying to get under control. It is nice to talk to other moms who have children with the same disabilities. My kids both have Occupational & Speech therapy. Also Has anyone ever done Hippo-Therapy (horse's)? My son has been doing it almost a year and it has been wonderful! I suggest it to anyone who's child has a sensory issue, it calms them so much.

Constance - posted on 06/05/2012

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Hi my youngest had PDD he was dignoised before his 3rd birthday . Took us a year to find out he was showing signs of being on the spectrum since his 2nd birthday glade we finally got some answers and we know why ye was acting the way he does . I am moving go San Antonio ,tx in October and I researched and they have more services there then they have in nc .

Carrie - posted on 06/06/2011

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My six year old son, Alex, was just diagnosed with PDD a few weeks ago and I am totally lost. I want to move to an area where he will have more services available to him. Any suggestions? Thanx!

Theresa - posted on 04/17/2010

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Hi Lisa!Both of my boys are on the spectrum,my youngest with pdd-nos.Even though it has been a little over a year ago of getting the dx we are still learning something new about both of the boys every day.

Kelly - posted on 04/16/2010

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Hi Lisa! my son is almost 3 and was diagnosed with ppd-nos... we live in new york, are u in our area?

Jessica - posted on 12/04/2009

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Lisa,
My step son is bi-polar, pdd-nos, and asperger's. He is now 11. His dad is in the Navy and I understand what you are going through. It was really hard on me to move into a house where I did not understand what was going on with him. I got on the internet and read everything I could get my hands on. It took alot of work and we did have to put him in the hospital to get his medication right. After therapy and alot of hard work, we got this down. I learned the coping skills that they gave him and taught it to the other 3 kids and we all use them. I learned what triggers outburst to some point and know what to do to resolve them. I needed him to understand that he has to listen to me and that Daddy will not always be there but I will. Alot of times when he had outburst he personally felt that I did not love him anymore because he can't control himself. Now that he is older and we have been learning for 4 years it makes it easier because he knows that I love him and I will do whatever it takes to help him. His mother signed him into a hospital and left him there when she was married to Dad. So he had worries of everyone leaving him.

Krystan - posted on 12/03/2009

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My son has PDD, at least that's what they wanted to call it. I found out that his autism comes from a genetic reason, which is fragile x disorder. On top of that, he also has ADHD.

Kristen - posted on 12/02/2009

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I have two boys and my oldest was just diagnosed with PDD-NOS and Dysgraphia. After months of only working on ADD, have to say this diagnosis fits my son better than ADD. Sadly my sons behavior around anger management had him consistently getting sent home from school. So I took the cue from the schools and started home schooling while I shop for a school that fits my son and won't reward his anger outbreaks with a free trip home ticket but work on pinpointing the underlying issues and help guide him through those feelings that get him there. Have a great family therapist who specializes in special needs kidlets like mine. But with the cost of seeing her and then social skills classes, tutoring, and OT.....have to hope he lands great things by high school to be rewarded scholarships, because my husband and I are watching potential college funds go into all of this!

Tara - posted on 07/03/2009

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I have four children three with some form of autism. My oldest has pdd-nos. She is a great kid and has come a long way. She is the biggest help and she is a lot of fun. She works really hard and has a great love for animals. She wants to be a vet when she grows up. She is 12.

Laura - posted on 06/30/2009

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My son just turned 4 and was diagnosed with autism spectrum disorder (on the high functioning end of the spectrum) just before his 3rd birthday...I am also interested in meeting moms with similar stories. He goes to a wonderful facility for therapy that is like preschool and therapy all in one, which is great, but kids outside of his school bully him a lot and i'm not sure how to handle it, because he doesn't realize that they're being mean and it breaks my heart.

Beth - posted on 06/30/2009

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My 10 yr old has PDD-nos, ADHD, major comprehension & speech delays among other LDs. He displays more characteristics of Asperger's than Autisn hence his "label." looking for any information that other moms can provide. My step-grandson is autistic and his mother recommended Circle of Moms to me. I do not know how much or even what to say. I love my son unconditionally but he has been bullied (& assaulted) because he is "different." If you have any advice for me, I'd surely appreciate your input. I am new to this type of forum as well. If I can assist you with anything, please let me know.

[deleted account]

Hello everyone! I have an 8 year who was recently diagnosed with PDD-NOS as well as Mood Disorder, ADHD, Sensory Processing Disorder, and some issues with anxiety. He currently attends a regular public school 1/2 a day and a very small school for help with the anxiety and behavioral problems. Each day is a struggle and some days are much harder than others, but with the support system in place it is getting a little better.

Lisa - posted on 11/21/2008

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Orginally my son was diagnosed with a speech delay, possible learning disorder. When he started school the school pushed for further testing, in kindgergarden he was diagnosed with ADHD and was put on Dexedrine and clonidine for agreesion. at 8 1/2 he was diagnosed with pdd-nos along with all the other diagnosis. Recently diagnosed with a mood disorder, possibily bi-polar. He started to take risperdrol 2 months ago and we've seen dramatic changes in him. Our biggest concern is his moods / aggression which at times can be very bad. He's 10 and getting bigger by the day and with how aggressive he is and his size we're starting to be afraid of him.

Lori - posted on 11/20/2008

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I have a 7-year old who has PDD-NOS. I must say, I'm a little new to this so I can't wait to hear what everyone has to say! :) My son also has many learning disabilities and my husband travels a lot w/ work. Two of my boys go to OT and then I do the therapy w/ them at home daily. I my son is such a great kid and it's sooooooo hard to see my sweet boy struggle so much! It breaks my heart! What sort of things does your child struggle with?

Tanya - posted on 11/20/2008

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hello lisa, i am a mother of 2 children. one of whom has autism and pdd- nos.i too am interested in meeting other moms like us.so i have an understanding of what your going through.its not easy but somehow we get thru it. my son is 6 yo and has so many delays that its just unbelieveable.my husband is in the army so he's gone alot and that doesnt make it any easier. sometimes i just wish my husband wasnt in the army so he could be home more to help me out with the kids.well anyways i need to go for now.have a good night.

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