Jun 07
Where are all the PDD-NOS parents? I invite you to reach out to me. I am not a doctor, not a scientist, but I am a parent of a PDD NOS child who has received services and has watched their child bloom and fight through the disorder to be declassified. My son Eli plays sports, he excels in school, socializes beautifully and communicates with his peers, his teachers and adults. I am no expert, but I can answer your questions and help you come to terms with the disorder. I invite you to post questions, post comments, call me on the phone or email me.
PDD-NOS parents need to get as much help as the do the kids. Get over the denial phase and seek help. It will change your life!
September 13th, 2011 at 10:55 pm
Hi there, Its so great to read your stories. I have a 3 y/o son who was diagnosed with PDDNOS in March of 2011. He has been a very busy boy. He is very high functioning. Speech and transitions are his biggest challenges. He is the most lovable boy. Very social…however, sharing is emerging but we are still working on it. As a parent I find myself not in denial so much but so badly wanting him to get all the services he can get so that he will no longer be considered PDD. I feel like that is horrible. We love our boy to the ends of the earth and no matter what it will never matter but I just want a world for him that he will enjoy and not struggle so I get so sad at times. He is currently in a 5 full day preschool program with SP, OT and ABA. ABA 2 days a week after school for 2 hrs and I send him to private SP once a week as well. I feel likes its so much but he has made so much progress. He used to bolt on us, not anymore. We can go out to dinner and not worry “what may come”. His words are coming. He talks all day long but not all is understood but he tries so hard. Sorry for going on and on but I just wanted to say your website has been a great source of information for me.
November 16th, 2011 at 2:54 pm
I was doing a search for information on raising a 3 year-old boy with PDD-NOS and it brought up your blog. I am really really new to this as my son has just recently been evaluated and this is the diagnosis out there now. I had never heard of this and just wanted to see what other parents had to say about their experiences raising a child with the diagnosis. My son is very high-functioning, exceptionally verbal and communicative, and is not at all delayed in learning. He does, however, have major social concerns, aggression, and prefers most of the time to live in his own world uninterupted. It has been a challenge trying to figure out what to do with him at home in terms of how to handle his frequent outburts. He is receiving behavioral services, but it doesn’t really seem to be all that helpful. He also HATES going to the appointments and sessions so that adds a whole different element to it as well.
I am glad to have found this website anyways, and was happy to see that you had invited other PDD-NOS parents to reach out to you. It would help me tremendously at this juncture to have other parents to talk to with similar experiences.
January 4th, 2012 at 3:53 pm
My son was diagnosed with PDD-NOS at 2 years 3 months. I guess part of me always new something was different with him, but I didn’t want to believe it. I think he is an interesting child. He is very smart and he seems to be progressing more and more every day. He continues to surprise us with the things he does and with what he is capable of.
It started with an early intervention eval. His doctor was concerned with the fact that he didn’t point and he never said a word in front of him. Personally, I don’t think he is too fond of his doctor, but anyway….He actually didn’t qualify for EI services and I felt a sense of relief. However, the EI team said that we could have a full Speech and Language Eval. So we did. My husband didn’t think it was necessary, but I said it didn’t hurt to do it. My son was a little delayed and so now he is receiving services with a developmental specialist once a week. They called it a clinical judgement saying that he did not qualify, but because he has some delays, he will be picked up for 6 months.
I had an eval scheduled with a neurologist already. And again, my husband didn’t think it was necessary, but I said it didn’t hurt just to cover all of the bases. Well, he was diagnosed with PDD-NOS. Not everyone agrees with this (his EI team, friends, etc.), but it is what it is. I think we are somewhat in denial as we have not told many of our friends or family. I just don’t want him to be treated any differently. He seems like your typical kid. He does repeat a lot of things we say, but that’s also how kids learn to talk and sometimes he repeats things when it is appropriate. He does have some behavioral issues-mostly with us.
He is receiving ABA services at home for 2 hours 3x/week. The doctor that diagnosed him recommended a lot more services. I’m afraid to put my son in a preschool for full day/full week. He’s still my baby and is just so young. I am also afraid not to get him the services he needs. I have to admit that I hope he will someday be “declassified”. I’m afraid that if he doesn’t get those services now, he will always have this diagnosis. I’m also not sure how to go about getting him all of the services she recommended. I told the ABA supervisor what the doctor said, but I don’t think she had the specialists available or she wasn’t understanding what I was saying. Now, I have the full report so I can give it to her and go from there. I still feel that the doctor recommended A LOT of services. I do not believe my son is very severe. If you read the report and saw him, you would think the report was about someone else. Seeing him, you would not think he had a diagnosis. I’m sorry I went on and on, but it was nice to let it out to someone who is not biased and isn’t close to the situation. What are your thoughts? Do you have any suggestions for us based on your experience?
Thanks!
January 5th, 2012 at 8:39 pm
Maria, I have no clue of your son challenges but you sound just like me. It is completely ok to be in denial. However, there comes a point where I feel that you need to overcome your fear of the unknown with your boy and get him all the services you can possibly get. I had the mother load. He had 28 hours a week with ABA and private speech. When preschool started I had my eval in hand and we walked in that that IEP meeting and I was extremely fortunate and they gave me everything. My son has been in school since July 2010. He goes 4 full days and 1 1/2 day. Its an intergrated classroom half of the day and then gets his services the other half. In 6 short months my son is talking. He doesnt stop. He is still delayed but my GOD that boy goes all day long and its music to my ears. We can take him out places, go out to dinner. Its been an amazing transformation and I thank the preschool program and I must say my husband and I have worked our butt off with him as well. I say do it ALL. You will know when its too much. I did cut back on the afterschool sessions they had in his IEP b/c it was just too much. As a mom you will know. Best of luck. its a long road and its a road that we are just beginning but for the first time in 3 1/2 years I truely believe my son with be okay and will have a promising future. Not challenge free but who’s life is challenge free? Take care
January 19th, 2012 at 1:40 am
Hi I loved reading through your stories of your sweet boy. My Austin (8) was diagnosed with pdd-nos in 1st grade and getting to that point was quite the challenge because he is so academically brilliant.
The social problems and emotional explosions are pretty hard to get around but its nice to know of other parents that have the same struggles and are so willing to reach out and share their stories.
January 21st, 2012 at 1:20 pm
It is a battle, even with Eli being diagnosed and then losing the classification of PDD-NOS I have found that his issues remain. He still stims, he still has some basic social issues but the support services we have received have really helped out with all of this. What are the nature of the social issues Austin is facing, maybe I can offer some suggestions and helpful hints, or maybe one of the other parents can?
February 11th, 2012 at 4:29 pm
My 7 year old boy has developed violent explosions when frustrated that include throwing things, assaulting us physically and verbally. I don’t know what to do.
February 11th, 2012 at 7:42 pm
Is your child a special needs child? I would reach out to your pediatrician for advice. Special needs kids need to have this kind of behavior attacked without delay. Kids often have problems expressing themselves so it turns to violence. You need to teach him how to verbalize his emotions in a more appropriate way. When Eli does this I sit him down, offer him a hug and I ask him to tell me why he is mad and educate him that in order to get a response from me he has to approach me correctly. I don’t respond to his outbursts. If you do it reinforces the bad behavior.
March 24th, 2012 at 11:15 pm
My son just turned three and since the age of eighteen months, I have known something just wasnt quite right. Early on his peditrician assured me he was fine and insisted things would be more normal by the age of 3. 4 months before his birthday, our pediatrician moved away. He has always been very high maintenance. He slept very little as a baby and always seemed to be on the go. Professional pictures were a nightmare as were our trips to resteraunts and the grocery store. Compared to other kids, he is socially akward and his fits are the worst I have ever seen. But there are several characteristics he never has exhibited. There’s never been ANY arm flapping, starring off, poor eye contact, walking on toes, rituals or lack of joy. He is very affectionate, talks well, and loves to cuddle and play imaginary things. While he adores babies and playing with his ten year old brother, he doesnt express much interest in kids his own age. But, around babies, he immediatly lowers his voice and loves on them. A year ago, he was acessed for autism by early intervention, and his score was low and not a concern to them. At that time, he showed out with his knowledge of alphabet, numbers and shapes. But im having him evaluated by a neurologist in April because he has recently become very aggressive for no reason. Meanwhile, I know he does better for some people and cooperates better for them than me. He acted like we were trying to kill him when i take him to get a hair cut, but sits still when my girlfriend takes him. Day care (we sont have a special needs one in our small town) calls me at least once a week to get him- sometimes while I am at work. Could it be that he is just ‘playing’ me and knows better all along? My mom thinks I should spank him more often than I do but I dont know if he can help it. Any advice would be greatly appreciated!!!
March 25th, 2012 at 1:42 am
There are a million things that can be going on here.Most of the spanking will never solve. I am not going to lecture on the pro and con of spanking but I will say this. Meeting bad behavior with spanking provides negative attention that can cause kids to lash out more. In my opinion there are better ways to handle the situation. Spanking is just not an option, ESPECIALLY if your child is on spectrum no matter how high functioning they are.
Kids can definitely play their parents. I would strongly suggest you evaluate your approach with your child and realize that there is a right and wrong way to deal with kids. I would also seek a second opinion and get a child psychologist involved that deals with autism and see what they say about his behavior.
March 25th, 2012 at 10:19 am
Thank you for your response. I will refer your reply to my mom who definately needs the reminder. How do you handle meltdowns and slaps in the face (which usually occurs when Im either saying no or telling him not to behave that way) when we are in public? He also slaps his teachers in the face. If he is on the spectrum, how do you handle that? One more thing- consider again, that he is on the spectrum, could you please explain my son Luke’s reasoning for this: Although he likes music on tv, when we get in the car and the radio is on, the first thing he says is ‘turn it off’! What’s up with that? He is running the show at our house and we need some suggestions. Thank you so much!
March 25th, 2012 at 10:22 am
P.S- Luke wont sit in time out. He runs off and it turns into a power struggle…an exhausting one.
March 25th, 2012 at 10:58 am
I can’t answer your question, the physical slapping is a learned behavior. There are better ways, it takes a calm approach. You have to verbalize the disappointment and take charge of the situation. He does not sit in timeout? Every single time he gets up and runs, I would pick him up, put him back in his timeout spot and restart the clock. He gets up again, you put him back again. Stick to your guns. Using a calming voice and explain without sounding angry why the behavior is inappropriate. No toys, no sweet talk, nothing but him in his spot for # of minutes that he is old. 3? 3 minutes, not a second sooner, not a second longer followed by asking him and making him explain WHY he is in timeout. When all finished a hug and a kiss.
A lot of spectrum kids have issues with noise, especially if it is loud. Try putting on his favorite music (Laurie Berkner etc) and see if he tolerates it better. He is the kid, you are the adult. Guess what – kids don’t win the battles, the parents do.
April 11th, 2012 at 11:20 pm
Hi my 8 year old son Matthew was just diagnosed PDD-NOS Monday. It is really not a surprise, we have considered it from time to time. He has had services for SPD since he was 18 months. He has had many services over the years and when he was five he was also given the diagnosis ADHD. I know that all these years we have done everything we could for him and loved him to pieces – none of that changes. I know that he is the same boy he was Monday morning. The school team is so supportive. Yet it is still hard to wrap my head around. Tonight I find it a little sad/scary.
April 12th, 2012 at 7:58 am
It will become easier to accept. The diagnosis is a good one because it opens doors for him. You will have to fight to get him all of the services you can. If they offer you five services, ask for seven. If they give you 3 days a week, demand 5. Eli still suffers from a lot of the PDD-NOS issues but he is a completely functional and happy child. He is MORE social than most kids even in the face of being denied by less social kids. He is polite, well mannered and smarter than 99% of the kids out there. Why? Because Jodi and I made sure that he had everything he needed and then asked for more. Don’t be afraid, sad or scared. Matthew will overcome everything and he will have a great life, all it takes is your continued dedication to him and some help (which I am happy to read he is receiving). A lot of parents see PDD-NOS as a death sentence for their kids. It is not, in fact it is a license of learning. A PDD-NOS kid just learns differently. When you find the trigger that opens him up a new child will emerge. Good luck. Feel free to drop me an email if you have questions!
May 5th, 2012 at 5:38 pm
My son was diagnosed at 2years and 3months old with PDd-nos and as a young mother of 3 I was very scared and really didn’t know what to do. I looked up information on it on the Internet and I’m always reading up on it in books as well. I wondered were my twins going to be this way? Did I do something wrong with him while carrying him? I followed all the steps I was suppose to and he hit every milestone until it was time to start talking. I was also mad due to the fact I felt like something was wrong and his pediatrician kept saying he just needs time and I could have been gave my son help! Nevertheless I am seeking help to enroll him back into therapy as well as my twins because they seem to be developmentally delayed in a few areas and it’s making wonder if my last born will be this way. I am so scared at the moment but imtrying to keep an positive outlook on things now. My baby is different yet he is so lovable most of the time but I need to know what are some ways to discipline him without everyone making it seem like I’m abusing him?
May 5th, 2012 at 11:51 pm
That is a great question, but before I offer my opinion I will say this: I do not believe that there is anything anyone can do differently during the pregnancy that will result in a person having a PDD-NOS child. If you didn’t smoke, do drugs or drink then I think you were fine, if you did those things, then you put your child at risk. Nobody knows yet what causes PDD-NOS or Autism. For all we know it could be some ingredient in shampoo or a type of candy. Nobody knows if it comes from the dad or the mom or a crazy combination. So in other words, never blame yourself. I don’t blame my wife, and I don’t blame myself and I wouldn’t want Eli any other way because it is his entire package that I adore as a dad.
On the discipline side of the fence. This is hard because most PDD-NOS kids are ultra sensitive and they might NOT have control over all of their actions. Discipline must change forms to something positive and nurturing like 75% of the time. I tend to yell at Eli when he does something bad that I feel he can control. I will not baby him because if I do, he acts like a baby. The bottom line is that there are going to be situations where you have to be firm, others where you have to be gentle but you always have to explain why. You are a parent, and you know instinctively when you have to be fierce and when you have to be subtle. Just because they are PDD-NOS does not give them a free ride from punishment.
For Eli, when I have to discipline him he feels that I don’t love him anymore. I explain the difference between being mad and disappointed. I tell him that no matter what I will always love him, but that does not mean I have to like the way he is acting or that I am not allowed to be mad at him…he only cares that I still love him. So I start off saying, I love you Eli, but if you ever do that garbage again I will ground you and explain why, followed up that I am disappointed in the choice he made. That usually corrects everything.