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New to the group* Confused*Scared*In denial*

Posted by on Jul. 2, 2013 at 10:22 PM
  • 10 Replies

Hi all!

My two year old son was just diagnosed with Pervasive Developmental Disorder-Not otherwise Specified;

Prior to this I was concerned about my sons behavior, Im a first time mom so I have heard of the terrible twos but never lived them! So a part of me thought it may be terrible twos another part of me thought it was something a litte more indepth. My husband and I scheduled an appointment with a behavior specialist, after our first meeting she referred us to have an autism test done. The administrator preformed the testing, we waited about two weeks then he called us to his office where he told us that our son who was 26 mos old had PDD-NOS.

My son speaks, he plays, he sings, he just has a hard time when we tell him "No" or when its time to eat if its something beside "white diet" he wont eat and throws a fit. He will hit his head off the back of the high chair throw his food, its horrible. If I tell him No he will hit, but if daddy says no he wont hit.

He also is not around any children as there are none in either of our families other than older ones. We did sign him up for a play group that he can attend once a month but there is very limited interaction with other children.

I have also noticed that he has a hard time transitioning from one activity to another, so we got a timer and prepare him for the transition.

At this point two months after the diagnosis we now have early intervention services involved where we have just started with an OT coming to our home once a week and a dietician coming once a month. I am completely ignorant to this diagnosis because I do not know a thing about it, I feel so scared and confused because I dont know if I am doing right by my son. The Doctor who performed the testing told us about regressing and Im so worried all the time.

Ive read the reports, Ive researched, I feel so lost as to what I need to be doing. My husband is in denial, he wants a second opinion. Our OT also recommended we get a second opinion.

Im sorry this post is "all over the place" I really just needed to vent..I have absoluletly no one to talk to about this.


Thanks for listening!

by on Jul. 2, 2013 at 10:22 PM
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by on Jul. 2, 2013 at 10:40 PM
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Aww, I remember how that feels. It gets easier. I would just pick up some books and do some research, that's what not only convinced me that it really was autism, but it gave me some strategies on how I wanted to approach things. I need to tell you something that you might not have heard, autism is treatable. Some kids completely lose their diagnosis, others can improve greatly and live fulfilling lives. Every child is different, but the things I found helped my daughter the most was changing to a gluten and dairy free diet (and eventually all grain and sugar too), seeing a DAN! doctor, and we're working on the Son-Rise Program therapy right now, with great results. My daughter used to only eat white foods too, that was part of the problem. Most likely behavior will improve if you change his diet. I would recommend the TACA website, its got so much info. In the meantime, just love your kid, he's doing the best he can under the circumstances. Hugs.

Violet's Mom

by on Jul. 2, 2013 at 10:46 PM
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Thank you for the kind words, and advise! I will definitely check out the the site. Thank you so much.

by on Jul. 2, 2013 at 10:50 PM
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It will get better...

"If the child cannot learn in the way we teach...we must teach in the way the child can learn."reading

by on Jul. 2, 2013 at 11:02 PM
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 Welcome to the group, momma!

Everything goes here....never feel funny about asking or speaking about what's on your mind. That's why we're here...    =)

I think we've covered it all in this group so if you want to look into any older posts, use the "search group" button in the right corner of the page!

It'll get better, I promise....hugs!

by Platinum Member on Jul. 2, 2013 at 11:11 PM
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Oh, im so sorry... 

If its any consolation, even the name has delay.. Delay doesnt mean forever or permanent.. It means, it CAN come. your son can get there. He just needs help. He will get there, since you are a dedicated mom who cares and will put in the effort. 

I am glad the timer is working. I did that too. I also liked to give my son things that made sence... Like 5 more times down the slide before leaving the park. Or 3 laps around the car (in the driveway) before getting in. Something quantifiable to them...  Where time "5 minutes" is truly nothing... Ya know? And the timer cant go everywhere... Or maybe it can? Lol

I ahve also found with my son that explaining why no, instead of saying no was very helpful. "Sweetheart, please dont climb on there, mommy worries youll fall and get hurt." Instead of just saying no, dont climb. 

Also realizing there is a sensory component to our kids that exists was huge. Sometimes the fight in them occurs because of senosry input/ avoidance. The white diet may be based on texture in his mouth, bland taste,oral motor sensitivities. 

Please remember, our kids do the best they can. They (like all of us) get frustrated, want "our way", cant deal with frustration (their tolerance is low) properly, have difficulty with empathy and flexibility. They can only learn it from us. We need to be empathetic with them when they are having a hard time, not stern. We need to be flexible when they are being rigid... They learn it from us, learn to truly pick your battles...  Truly pick whats important.. 

I also like to think of my son as if he has a battery. Being out in the world drains him, people drain him, so i need to make sure that i plan his day with plenty of time to "recharge". Plenty of time for him to have down time before I ask more of him. When stretched too thin he acts up and acts out( much like the rest of us)... So I need to protect him and teach him how to take good care of himself going foward.  

I highly recommend reading 4 books: the difficult child by turecki, the explosive child by greene and the sensory sensative child smith/gouse and the out of sync child. 

My son is 6. He is doing AMAZING! He is not medicated, he has 6/7 friends who like him. He is in our public community school (in the 1/2 special ed, 1/2 regular ed) class. He is really just so great. Funny, smart, and making great strides thanks to his psychologist who recommended all those books! Theyve been priceless in his development, 

by Platinum Member on Jul. 2, 2013 at 11:14 PM
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I should also add thanks to me too... Ive worked very hard to help him too, if i can be of anybhelp to you, domt hesitate to message me.


by on Jul. 2, 2013 at 11:28 PM
Thank you so much. I feel better just writing out that post. Like I said there is no one besides my husband that I have been able to talk to about all this. It warms my heart that there is this site for moms going through the same thing.
by on Jul. 2, 2013 at 11:54 PM
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 We are all here for you! Ask anything, anytime. Someone has the answer.

by Member on Jul. 3, 2013 at 12:55 AM
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You can get a second opinion but most will not do it within 9 months of the first diagnosis.  At any rate you are aware of this early on which gives him the best opportunity to be successful later.  Even if a second opinion later on comes up with something different, early intervention is a great thing.

my son has PDD-NOS as well and was diagnosed at 6, 4 months ago.  I can only imagine how much easier Kindergarten would have been for him had I pursued a diagnosis sooner.

by Darby on Jul. 3, 2013 at 10:16 AM
1 mom liked this

Hugs mama!  Welcome to the group:)

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