I feel your pain. And yet I KNOW that the pain is necessary. I'm the mother of a 16yo PDD-NOS boy and I can honestly say that regularly bringing my son into normal social situations is the best thing I have done for him, eventhough the most painful. It taught him to accept things he did not naturally like, it got him used to sensory input, and (the MOST IMPORTANT THING OF ALL), it taught me just exactly what he still needed to learn. I never allowed myself to get lulled into a sense that things were perfectly OK by keeping him out of the mainstream of society and turning a blind eye to his issues. As tough as it is, it's vital for our kids (and our families) to learn to fit in to the normal world because the normal world is never going to change for us. Exposure and on-the-job training for us parents is key. (((HUGS)))
You are wise to see that you and your husband need some recharging time. Investigate respite programs in your area. Get a reliable babysitter set up. I get up when my husband does -- 5 a.m. -- so that I can have a cup of coffee with him in peace every morning. He leave for work at 6 and I don't have to wake our son til 7, so I get a quiet hour on the computer all to myself. This peace and connection starts our day right.
Another good thing for your to do would be to seek out other moms of PDD-NOS kids (or even kids with other special needs). If you form a group, you can all take your kids out together or take turns inviting each other to your homes. One of the many great things about doing something like this is that most PDD-NOS kids have NT siblings and your daughter will be able to be in touch with other kids who are perfectly normal but who are dealing with siblings with issues. Of course, it won't hurt that you'll have other parents to compare notes with and get support from. Good luck.
Dear Tzoya,
Thank you so very much for your hope. It inspires me to know that you are going through the same thing.. Can I ask what age your son was diagnosed? I do think it is important to keep him also within society and yet continue on. To keep moving forward.
The Support group advice is excellent and would love to start one if I can. I have recently purchased a book called Pervasive Developmental Disorder ,, an altered perspective.. written by Barbara Quinn and Anthony Malone. Wondering if you ever heard of this book.. It is so darn interesting and want to have the hours in the day to read it when I can.
Thank You so much
My son is 16. He loves people and socializing, eventhough his language is very poor. It doesn't matter to him. His is middle-functioning. His Dx is PDD-NOS but he also has hearing loss as well as Tourette's. He is a happy boy and is generally liked. It's been hard and it's still hard, but it's also great. I don't know WHAT my life would have been like without him. I also have a son with PDD-NOS and even though he is high functioninng He
is nervous of all new things. I feel like I can't get enough info about PDD.
When I learn something new I say to my self oh thats why he is doing that.
Do you feel the same way? He was diagnosed when he was 4 turrning 5 and
this May he will be 6. He also has a older sister who is very good with him
but, will ask alot why her brother does some of the things he does. It is
hard explaining it to her but we also have alot of faith and that keeps us
going expecially when he is having a rough day.
Hi Allison,
Thanks for your reply and yes that sounds great, I'd be happy to be support to each other and you can email directly if you would like.
My Eddie
However, his therapist and teacher feel that he may need a longer day next year and so I have been looking into different programs for him. He is in a self-contained class of 12 children with 1 teacher and 1 aide. It is a lot of kids but he holds his own and is learning but he withdraws when there is too much going on. He has always been quiet but always verbal. His expressiive language/pragmatics is extremely poor .. of course goes along with the diagnosis. I do not want him to be in school 5 days a week for 6 hour days though, I think this is too much for such a little boy. These other programs are at least 30 minutes from my home and Eddie has a twin sister and a 3 year old brother as well - it is just too much. We shall see.
Ed also has a pediatric neurologist who has not yet talked about any medications. How is it going with the Melatonin? I have heard so many good things about it. I still give Eddie his bottle
Stay well and talk to you soon.
Dear Mom of 2,
Sounds like we may be similar with the younger brother older sister thing..And yes, I do at times feel there isn't enough information.. and the information out there gears toward Autism websites which is okay to a degree, however they are different diagnoses in that PDD-NOS has the same characteristics but not as severe as autism; hence the umbrella of Pervasive Developmental Disorder/Autism Spectrum Disorders....So when you mentioned about whenever you read something about it and think, so that's why he does that.. I totally do the same thing.. my son also has sensory processing issues in which he is very sensory seeking.. I am having a hard time making sure my daughter gets adequate attention with this whole thing going on with Eddie.. Especially being she is starting Kindergarten in the fall.. Do you have any suggestions on that?
Our family also goes on faith.. prayer is remarkable and needing to keep the faith is key for us..
Thanks for your reply and hope to hear from you soon!
Hi. Your situation seems similar to mine, they even have the same name. My son was also recently diagnosed and just turned 4. It is truly the most heartbreaking to see your child amongst other children and they seem so alone yet they do seem so content.
It is somewhat easy now though, 4 is still so young and the children just all blend together. My fear and I'm sure all of our fear is when he gets older and behaviors are noticeable to other kids. I hope and pray parents nowadays are teaching their kids acceptance, tolerance etc. because they will definitely have to deal with momma bear over here if they mess with my son!! :)
What type of preschool, if any, is your son attending now? My son goes every day 2 1/2 hours then gets 1 hour at home.
Hey Christi!
So grateful to hear from you and really appreciate your input! Perhaps we can always be a support to each other as both of our "Edwards" lol .. are dealing with PDD-NOS..
Actually, at this time, my son receives early intervention at home.. He has a speech therapist, occupational therapist and special ed teacher . Next year he will attend preschool 2 days a week with a full time aide, some intervention in between at home and their as well. In the summertime, our early intervention program offers a preschool program called stay and play for 6 days I believe with his early intervention at home teachers their..
My son also has a pediatric neurologist that just diagnosed him, and at this time he is only receiving Melatonin 3 mg at night to help him sleep through the night..
In the future, he may need trial prescription therapy, but I want to see his improvement first through the intervention. I agree with trial medication if needed and we are at our wit's end.. I just don't want to start and do the "medication shuffle" with him at this time.. I would want the lowest dose possible if required. We shall see.
Tell me more about your Eddie.. I love the way you say how you would stick up for him in situations with other kids. I do worry about that as well for Ed's sake. I need to take one step at a time before jumping to those conclusions right now.. I would love to be a support system with you if you would like.
When did your Eddie turn 4? Mine turns 4 on May 11..
Talk Later
I am almost 30 and I have PDD NOS and I experienced many of the same
Dear AnnaLauraBrown,
I so appreciate your insight and what hope you provide for us moms. I so appreciate your strength and a 2 masters degree is AWESOME! Just curious as to why you cannot drive. Is it an anxiety thing? Just curious..
Is there anything else you can offer me that can help my son and those of us that have special smart beautiful children to raise?
God Bless You
Allison (mother of 3 3/4 year old (going to be 4 May 11) of Edward)
Hello Everyone,
I am very new to this website so bear with me. I have a son who will be 4 in May, that has just been diagnosed with PDD-NOS. He also has sensory seeking issues or Sensory Processing Disorder. He has been receiving early intervention since Dec 2006 and has been progressing quite well. I guess I am taking the diagnosis PDD-NOS in and have been struggling with the whole idea of it. He seems very happy and yet very much in his own world. I cried after an Easter Egg Hunt we did because for the first time in a while I saw him with other kids and he just never seems to interact with them and yet is content with himself. I see the faces on people when I have him out places and I need to stay focused on the positive. He is exceptionally bright for his age, however his social cues, (well I don't think I am telling anyone in this forum anything new).. He gets restless and throws himself about in public.. the usual routine. I guess this is all hitting me at once lately and I am in tears alot. My husband pulls me through alot of times and our faith helps us get through the day.. I love my son so much and I worry about his future... Our pediatric neurologist just does not see him being autistic due to his socialization and smiles and laughter.. whether the socialization is jibberish, Ed is aware of his surroundings to a degree. I ask for alot of prayer and any and all information this forum can give to me.. I would so appreciate it.
I worry about his older sister being affected and making sure my husband and I get out for a date when we can so we can stay sane through it all. It seems like so much to deal with and I need to keep our sense of humor and always be on the positive with Eddie. What I am afraid of, is taking on that defensive attitude when we are out in public. I so cannot care less if I get dirty looks but I am afraid of myself in case I see someone that might really piss me off and what I may say.. Thanks for anything offered God Bless Dear MomsSpecialEd, Caught your thread late...But you mentioned abt your boy being restless and throwing himself about in public. My autistic boy had a major one once, that was when he 5 yrs (now he's 8 yrs), early in his diagnosis...and definitely us as greenhorned parents in dealing with tantrum breakoust. My wife and I were in a shopping mall when he just got into a terrible "rolling on the floor rage" coz he couldn't get what he wanted. A man, then followed by his wife, had the cheek to watch the whole scene like it was from a movie...and they occupied first class seats, standing just 2 feet away!! I was MAADDD ! But the immediate problem was to deal with the raging bull screaming and shouting away...So we whisked our boy away... We have FAITH to in the same Heavenly Father, but at times we question why ???? But when we realise it's His will for us to be the care-givers of this special child...then it turns such occasions into opportunities to witness...If they have no interest in you or your boy then they'll probably scamper away...But if they pause to enquire, then we strike a conversation...and who knows where it'll lead from there... I've mentioned elsewhere in another thread, we(both of you with your daughter & yr son as a FAMILY) walk, hand in hand, arms over shoulder and palms in prayer...TOGETHER...
for that lovely message of hope and support.. Yes our Lord and Savior does pull us through during the times of great stress and I ask HIM now to guide me with patience always..as his early intervention is done for the summer we are much looking forward to "stay and play" at the local head start for the early intervention kids.. a summer program coming up..He will also be attending preschool with the help of an aide on hand at all times.. Eddie is doing really well at this point although his sister starts summer swimming lessons and of course I have to take him along with a leash.. wish me luck there.. I need to occupy him or take a walk around the bleachers or something.. we shall see when we get there.. Thanks for your encouragement.. God Bless
My parents said I was the same way, in a few years, his peers will notice he is different and he will become the target of bullying. I endured years of physical and verbal abuse. My parents would try and put a stop to it, and the teachers would do what they could, but they will always have a difficult time, your child will have to get used to being teased and possibly physically harmed, very sad for me to have to say that at least in elementary school. Your son will im sure get into trouble through out his school career, i could not stay outa trouble and i would sometimes retaliate against those who picked on me after a while, teachers seemed to see me as a trouble maker and I would end up getting into trouble and these kids more or less got off scott free. the reason is because i was always involved with the problem, the teachers of course did not care i had an mild case of autism, no excuse to miss behave but i had problems with people every damn day so they thought i was the one causing them and I really hope your expereince with the schools will be different then mine. What your child needs is a careing advocate, i had my special ed teacher and he would help me even when i finally acheved entry into a normal class at the age of 11, 6th grade because i had improved enough. But i still got into trouble and whenever i found myself in the principals office, or needed help with school work, or was overloaded he was their to act as lawyer, friend and helper. He was 1 big reason for my sucess, probably the best thing the public school could give me. I think i got off track from the initial discusion of your child and his contentness of not socializing sorry, anyways.
My parents along with the school decided it would be best to put me in special ed until i was in 4th grade, around that time i showed some imporvment, i never went to speach therapy, never took medication, rairly saw an psycologist except when it was nessissary to gadge if i was changing and ready to be introduced to normal classes which for years I spent more and more time in these classes before they decided i could handel myself and would have to learn to just go with the flow once middle and high school came, i got better at it and did alright. Your child will grow and along with growing will be social skills, their are many kids out their, good and bad, and they will make friends, hopefully overtime the friendships will allow your son to learn his social skills better and once he gets to be a teenager things will get easier (well only in the making friends dept) and you will worry less about his socializing skills and how different he will be and more about the dumb things he will do with his friends and his wishes to obtain a learners permit.
Everybody is different, but dont give up your son he is way to young, he just does not want to socialize and make friends at the moment, in a few years he will feel a desire to try and assimilate and with the theripy plus your support and love hell make it!
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