Having a hard time.

DS is three years old. I noticed he had some delays in his conversational speech, but it wasn't until daycare brought up a few concerns (he won't look at them, he won't play with the other kids, he won't talk to them, etc.) that we decided to get him evaluated by our district.

The psychologist said because DS is so inconsistent he really can't label him confidently as anything. He is affectionate with family members (we get random hugs and kisses constantly). He talks a lot at home. He makes consistent eye contact with us. He observes the world around him and wants to know what things are. He engages family members in asking them to play. He LOVES playing with my 7-year-old nephew. He doesn't stim. He said if he could have given him a PDDNOS diagnosis he would have just to get him some services.

All I heard is PDDNOS and I can't stop crying over it. My brother has Autism (and was textbook: walked on his toes, spun in circles, no eye contact, etc.) so I understand how difficult of a road this is. DH can't get past the fact that he scored in the 58 percentile of his IQ test which is considered low (it was due to his inability to transition between questions) because he can count to 300, knows his shapes, upper and lower case letters, etc. We are both having an extremely difficult time processing it all.

I just needed to vent. I know a lot of you on this board are going through much more, so I hope it's ok that I released some stress here. Thank you for listening.

Message edited 11/25/2014 11:09:00 AM.

Re: Having a hard time.

Sorry to hear about this.

The beginning is always tough and everyone has an opinion, especially within the family.

It could also be something or it could be nothing.

DS has a different "diagnosis" as your DC and so far since he started school (Kindergarten) we've seen a huge positive change in him.

The best thing you can do is be proactive about the situation though and it sounds like you are already doing that.

Having a hard time.

In the very beginning it is hard but try not to focus on a diagnosis, getting therapies is what is important. My DD is autistic. Very high functioning and shows no signs of those that are considered "classic autisic". She never stimmed, had great eye contact, very affectionate. When she was younger she only spoke at home and was considered a selective mute. Her first IQ test was I think a 42 or something like that. I really tried hard not to worry about what she got on those silly tests and to focus on what she can do and what I can do to help her. If they wanted to believe her IQ was that low, then great because she got more services. Autistic children think differently than a typical child and those tests are geared for typical children so a true autistic person will almost never score high on those tests (not talking aspergers).

Through a ton of therapists and some tough years when she was younger, she is a terrific little kid. Yes she is quirky but she had a ton of friends, is a the top of her class academically and in full Gen Ed. We still have to work on alot of social skills with her and are teaching her coping mechanisms to deal with her anxiety but there is no way that any of her test scores fully describe the wonderful girl she is.

Re: Having a hard time.

I completely understand! I am going through the process now with my twins. When we received the evals, it was so hard. DH flipped out. He said these are not our children. They don't know them. My kids also had difficulty transitioning, listening, and just understanding in general what was asked of them.

We spoke to our coordinator yesterday to review the report and she said before we even began that to take this in stride. It's a moment in time and a tiny snapshot of our children. She said don't let this define you or them, use it to help them!

Psych said same thing about one of my twins (PDD), but actually said she doesn't believe he has it, but is exhibiting some of the behaviors (as you know there as so many on the spectrum). She just wanted to ask to see if anyone else had ever brought it up. I actually thought it might be in the report but it wasn't.

The good news (I know- as if any of this could be good news) is it sounds like he will prob qualify for services. The hope is they get tweaked or fine polished (as the psych described it) so they can show everyone else the great kids we as their parents know they are. But we want everyone else to know it too!

The evaluator also told me in her experience a lot of the time once speech services start, so many other issues get corrected naturally. At this age, speech is so key. Even a little delay sets everything off because they can't communicate and a whole host of other problems show.

My kids have a lot of the same things you describe. They wouldn't respond to their name, they don't interact well with other children, etc. Their nursery school teacher recommended the eval which is why we started.

I know it is so overwhelming. But you are not alone. It feels like you got slapped in the face. I can relate if you ever want to FM.

Re: Having a hard time.

58% is within the Average range. It follows a bell curve. It's not like he got a 58% on a spelling test. Look at tge actual IQ Full scorce and look at the verbal and performance score. 85 through 110 is the Average range (I'm pretty sure).

Re: Having a hard time.

I know how you feel. Just hearing something is wrong with your LO makes your emotions go all over the place. When my DS was diagnosed (ASD) DH had a very negative reaction, but the only thing I was concerned with is getting him help as early as possible. Hopefully your DS will get services to help as well.

Message edited 11/26/2014 8:53:45 AM.

Re: Having a hard time.

Re: Having a hard time.

Thank you all for your kind words. We are continuing to process it all. DS had his speech eval on Tuesday and he did ok. I believe he will qualify based on his lack of W questions (if he wants to know what something is he points to it and says, "That's ummm..." and waits for us to finish the sentence) and the fact that his back and forth answering questions isn't where it should be for his age. He does have a strong vocabulary though.

The psychologist was the one who told us the 58 percentile was low which is why we were so upset by it because we know how bright he truly is.

I appreciate all of the stories, advice, and support. We will take it one day at a time. I'm sure I will be posting more as the process continues. Thank you all!

Re: Having a hard time.

I was in your shoes 3 years ago! I was very upset, couldn't sleep and cried for four days straight. I was driving myself crazy googling everything I could find on the net about PDD-NOS. I almost needed therapy myself over this but with the help of a GREAT developmental preschool and my mom and DH I got over it and became the strongest advocate I could be for my son. My son was 2 when he got the diagnosis he was a runner in preschool, needed a one on one aide was in a 6:1:2 required max therapy and now he is in a typical kindergarten class functioning appropriately and independently and he still gets his special ed therapy one being his most needed speech. His processing of speech and language is still low but showing progress. Teachers love him, he is very polite, a pleaser and playful with other children. Night and day from she 2.

Hang in there and get every kind of therapy he deserves. Early intervention is huge for his future.

Re: Having a hard time.

58th percentile is not low. You were either given misinformation or misheard. 58th percentile falls within the Average range. Average range is 25th to 75th percentile, IQ score of 90 to 110.

Re: Having a hard time.

Re: Having a hard time.

Re: Having a hard time.

Having a hard time.

Now I'm confused. If he said 58th percentile and that's fine, I don't know why he said it was low. If it's 58, then from what I've been reading it's not indicative of what we've been seeing at home.

Re: Having a hard time.

Do you have the written psych report? The scores follow a bell curve, so 50% is the mean. That means if his Full Scale IQ score is at the 58th percentile, he did 8% better than the mean. That's really good. If his Full Scale IQ Score is a 58, that would not be good. The Average Range, as a pp said is 90-110. One Standard Deviation below the mean and One Standard Deviation above the mean (50%) is Within Normal Limits.

Re: Having a hard time.

Re: Having a hard time.

Having a hard time.

From my experience, the psycholgist that my evaluated my boys gave me there IQ score & then said you were in the % range of X

Having a hard time.

My DS got a PDD-NOS diagnosis at 2. I would focus on what he can do and not on the test scores, as much as possible. My DS has scored low cognitively on several tests, which we always knew was not indicative of his intelligence. His teachers have agreed once they have him in class and see what he is capable of. One explanation is that his communication delays and processing issues prevent him from responding in a way that shows his abilities.

Don't shy away from the diagnosis. Your son is not your brother and they may present very differently. I know it's hard to hear, especially in the beginning, but the diagnosis will make it easier for you to get the services he needs.

Re: Having a hard time.

Re: Having a hard time.

I just want to thank you all for your support and advice. I am processing this one day at a time, and it goes from being okay to complete emotional breakdown. I think once I get the reports, we have his CPSE, and he starts getting services I will feel better. I am struggling with a lot of different emotions and thoughts right now. I'm sure I'll have plenty more questions ahead. Thank you!

Re: Having a hard time.

Posted by MichLiz213

I just want to thank you all for your support and advice. I am processing this one day at a time, and it goes from being okay to complete emotional breakdown. I think once I get the reports, we have his CPSE, and he starts getting services I will feel better. I am struggling with a lot of different emotions and thoughts right now. I'm sure I'll have plenty more questions ahead. Thank you!