My son diagnosed yesterday PDD-NOS - GUIDANCE PLEASE

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I have a son who will be 3 next month. When he was just 2 I noticed things he would do such as:

1. Be very aware of patterns, balance and shape separation.

2. Line up books

3. Stack - but not just stacking. Say if it were blocks, he would stack only where yellow blocks were on yellow and even went so far as to, if the yellow part of the block was a number, he'd begin stacking but noticed if a number was of one he had already stacked, he'd take down the ones before that one and put them together. i.e. first block a yellow 7, then yellow 5, yellow 1. If the next block was a yellow 7, he'd take down the 1 and 5 and put the 7s together and then continue on.

4. He would not read (flip through) children's books but would want paperback books and would just flip through pages one by one. Phone books were a favorite.

5. Not very verbal. I learned later I was encouraging echolalia b/c I would say, "Do you want milk?" and he would say 'milk'. I would accept that as an affirmative and give him milk even if he didn't want it.

Now, I called Early Intervention and they sent out what I thought was a speech therapist to 'coach' him ONCE every two weeks for 30 minutes. I found out later that she was just a technician who'd go to his daycare (a very good daycare that he's been at for 2 years, small classes (no more than 8 children), video streaming for me to check in on him at work) so, this past December I sought out a speech therapist and he went twice a week for 3 months (at $80 per 'session'). I stopped his attendance until I received a diagnosis b/c I didn't think it was helping. "This is a ball. A ball. Do you see the ball? It's a red ball." He'd say "Ball" and the therapist would be so proud. Okay lady, he has over 150+ words. He's known the word 'ball' for 8 months, my problem is is that he doesn't utilize anything other than nouns and doesn't put words together. i would tell her that our issue was not understanding words, but using the language that he has.

Now, he does NOT do 1-4 for about 5 months now. He couldn't care less if you stack a green block on a red block. He doesn't care if you move something from the line of action figures he's lined up. He dresses himself, shows and accepts love (really likes to snuggle), loves to laugh, can absolutely understand our facial expressions and has a ton of his own, and as of 2 weeks ago, is fully potty trained (less sleeping times at night). I am very lucky in this regard.

So, yesterday they determined (a place called Glenwood out of Birmingham, AL) that he is PDD-NOS b/c of his total lack of back and forth conversation. If I tell him to go get his shoes or his stuffed elephant, he'll go locate it and bring it back to me. However, if I ask him what he did at school, he looks blankly at me. Eye contact is not more than 5 - 10 seconds. He also will 'act out' scenes from movies. His favorite is Wall-E as for the first 30 minutes, there's no speaking involved. He'll make the noises, turn in directions that the character does, etc. This has become less frequent as well, but he does still do it.

I asked about PECS for him and both the Early Intervention and the Autism specialist said that he was too advanced for that. I then asked about ABA therapies and they don't think that would be a good fit for him. OKAY, SO WHAT THE HECK AM I SUPPOSED TO DO THEN???? They said, "Let's see what the school system says." ARE YOU SERIOUS?!? He's almost THREE. I need to do something for him now!

So, this place is a wealth of knowledge and first hand experience. I'm thankful for being directed here and wonder what say you? I'm just afraid when he says "I want (fill in the blank)" that he's not necessarily knowing that he's asking for something but that I've been making him say these words before I give him what he wants. Did that even make sense? He jibber jabbers all the time. I keep saying "Oh...that's interesting! Tell me more!" or "What?" in a playful way so he knows that I'm interested and not try to hinder him in his attempts at speaking.

Anyone have guidance for us? Thank you for taking the time to read and responding.

Hi, Katejake,

I moved your post into the Parent's Discussion so it would have a good chance of being answered by people that have had the same experiences. I want to welcome you to WrongPlanet and hope you find the information and support you need from those that have worked the same issues.

Welcome home!

Merle
Moderator

Thank you for letting me know and for guiding me to the right area, Merle. I apologize for posting in the wrong area. I appreciate you redirecting the post.

oh, Katejake, it wasn't 'wrong' it's just here it will have more impact with those who have had experience in your issues! You're fine, honest!

Merle

I don't know about where you live, but the school systems here serve children 3 and up.

Sorry - should have been more specific. He'll be 3 next month and will start preschool in August. So, May, June and July I'd like to get him into SOMETHING. I feel like I've wasted enough time as it is and don't want to allow one more day to pass.

Welcome and let me say I feel your pain and frustration. I have two boys aged 12 and 13. The youngest has ADHD and the oldest has Aspergers. It has been a huge struggle to find people to help us. I have found many so called experts are just a waste of my time. I like the definition of experts as - X is an unknown quantity and a spurt is a drip under pressure. Sounds rude but totally apt for many of the therapists I have met.

Fortunately I have managed to find a child psychologist who has a child with Aspergers and she is such a breath of fresh air. I actually respect her because she isn't just spouting theories. She has real experience and understanding.

I guess what I am trying to say is that as a parent, if you feel unhappy with a therapist, go with your gut instinct. You will know when you find the person who works for you and they are out there. From experience I know you have sort through a lot chaff before you find the wheat.

Also you need to educate yourself. You know your son better than anyone else and you care more than any therapist ever could. I have spent years being my sons therapists. I have spent countless hours teaching them social skills and working through all lifes issues that keep coming our way. It's hard work and at times I have doubted myself, after all I am not an expert, but I have been told by an expert that my older boy has been given the diagnosis of Aspergers rather than High Functioning Autism because of the work I have put in. He is able to function much higher than his test results predict he should be able to. For him particularly, the early intervention I as a parent gave him has been helpful even though half the time I was making it up as I went along.

Never underestimate the power of a Mothers love and remember, you are not alone. We are just a post away

My first question is this:

Do you, using your instincts as a parent, as the person who knows your child best, believe that he needs something more in the way of therapy or interaction?

Or are you worried, because of all you've read and heard, that a window is going to close and an opportunity is going to be lost?

I think I hear the former from you, but I want to check, because in the current environment there is a lot of the later. As much as early intervention can make a huge difference, it also really depends on the child and the unique situation, and much of what the early intervention therapies do was developed by parents well tuned into their kids in the first place, so it isn't always something that just has to come from outside.

The whole language thing is difficult. People didn't used to worry about kids who weren't pacing all their language skills perfectly because everyone knew about kids who hadn't spoken a word until age 4 and then popped out complete sentences. Or weren't stringing words together but quickly moved past that, as well. Young kids really need to move at their unique pace. All the worrying and therapy in the word won't change that simple fact. But what it CAN change is a child running into all the wrong triggers and retreating.

The single most important thing you need to do for your child at this age is KNOW him. Separate everything the other moms tell you and everything you've read about spectrum disorders and pay attention to your child. Is he drawn to things that he can't handle sensory wise? Not everything a child is drawn to is positive for them. Observe the patterns: what has happened in the hours before a meltdown? Or when he chooses to talk less than usual? When is he comfortable, relaxed? When is he agitated? Most spectrum kids have quite a few sensory issues and understanding these can be keys to other behaviors.

Talk to him, interact with him, invest time in one on one play and communication - even if it's pointing. Find out what comes naturally to him, where his joys are. And what makes him struggle, stress, or tune out.

If you do all that and still feel strongly that he needs more professional help, then you bang on every door until someone gives it to you.

Be aware that spectrum kids are often 1 step forward, 2 steps back for no reason that is apparent at all. It's like AS has it's own unique developmental pattern for each child. What you want to see is the path overall, not the individual steps. And it sounds like that path has been pretty good - your child has acquired essential skills.

Beyond the above, I have to confess, I can't help much. We didn't have an AS diagnosis until my son was 7. At that point, the jump was directly into speech for pragmatic issues as well as into OT to deal with sensory issues and motor skill problems. Be aware that your child is likely to need all of these later ... but maybe, maybe not, now.

What he needs most NOW, IMHO, is to be the little boy he is.

From what you've posted, it sounds like your son's receptive language is good, and that it is only his productive language that is somewhat delayed. Do you know whether there is any issue with muscle tone? Some children have issues with oral motor planning or muscle tone that negatively affect their speech production. This can be worked on by either a speech and language pathologist skilled in this sub-specialty, or an OT. If it is truly an issue of pragmatics of speech, you need a speech pathologist who understands those issues, rather than language acquisition or articulation.

I don't think you were encouraging echolalia in your #5 - most children go through a stage when they repeat the item they want rather than say "yes." It's a developmental stage, and your son is still very young. The issue is if he is repeating it whether or not he wants it. Most children learn to say "no" before "yes," and they don't repeat the name of the item if they don't want it. If he is developing some form of echolalia, it is NOT your fault! You are using language with your son in the same way that mothers always do - don't blame yourself.

As to the early intervention options - every state is different, in terms of who is responsible for providing services for the 3-5 y.o. group. Birth through 3 is one group, then it transitions to the 3-5, then to the elementary school. You need to get in touch with the folks who handle the 3-5 y.o. group. If there is a support group, or an online group (yahoo has lots of groups like that), they are often the best source of local information. You don't necessarily need to find a group specifically for ASD - any special education group for parents should be able to put you in touch with people who can help you navigate the early intervention system.

Completely agree! Wonderful advice.
I would call your local public school and ask about special education preschool services. If you say preschool services only, they may say "We don't offer preschool." You may have to be more specific. It is usually an easy process, especially since you have a diagnosis. You would most likely have additional evaluations and then they would discuss if preschool services is the most appropriate. There your child would get a lot more speech/language and other services. I would strongly encourage you to go that route. Also, some states offer medicaid services for children who have disabilities (not financially based). It could be through the department of health and welfare (or whatever you call it there). If you can get that, your child can get services without you having to worry about money.

Help is out there!

Not inherently bad. I am not exactly unaware even today.



Not inherently bad. I did THIS also, and still do, to a degree.



Have you ASKED him what he was doing? I have done some stuff that seemed crazy, but it wasn't.



Did he REALLY not want it? Even some "normal" kids do that.



Well, THAT is good. As for the communication, some REALLY take off by the 5th year, so there is still a chance that he could seem somewhat normal for first grade.



As for asking what happened at school, etc... I doubt that is THAT uncommon. I have been the SAME way. The other stuff you show here indicates he DOES know more than he indicates.



It probably IS hard to judge WHERE he needs a particular type of help. YOU would be the best to determine that. But check out the high and low milestones. While he is certainly behind on some of them, he might be ahead on some(giving you hope). Also, he may not be behind the woorst timeline in any of them.



A little girl, of about 4yo once asked me something. I said "WHAT?"? Her mother said "do you have any kids?". I said "NO.". She said "Well, THAT's why you don't understand her.". nearly everyone else there was a parent, and they all agreed. SERIOUSLY, I talk with people ALL THE TIME! I understood EVERYONE in that room except some younger(under 6yo) kids. MAYBE YOU have the same problem. ALSO, the average 2yo milestone is 50% intelligible SHORT sentences. Keep in mind, thatt the WORST CASE milestone is words by 3yo! So it sounds like your child has beat the worst case scenario, and might have met the average milestone.

Anyway, I am simply trying to give you some hope, ask you to check out the milestones(That IS what they are there for afterall), and try to nudge him in the right direction yourself.

Wow. The responses I have received have been very welcomed! Thank you all so much.

I just found that we have a family connection with a world renowned Occupational Therapist based out of London and I just got off the phone with her. Why this person did not come to my attention earlier is beyond me, but I'm so glad that she's with me now! She was a wealth of information and told me to get the book "The Out of Sinc Child". I feel like with the ideas I've received from this thread along with this connection I just made, that I have now a path that I can explore and get the therapy my son will need. I need to learn everything I can about sensory integration therapy and get a good pediatric language specialist on board.

Thank you all so much!

Katejake,
it does not sound right what the specialist said about son being too advanced for PECS.
PECS isn't as basic as it sounds,as long as have got enough pictures-am get given letters in PECS along with the words,and would use a PECS book if didn't have enough forms of alternative communication to use already.

Have ever thought about teaching him Makaton signing? it's signing that is based on actions,rather than words,it's more simple than other forms of sign due to being action based,and having less steps involved per sign,and was developed for people with learning disabilities,but people teach it to their babies to get them communicating before they verbally speak as well.
Am was taught makaton by a speech therapist and support staff,but parents/carers can go on courses to learn it,or get the books themselves.
If are interested in Makaton,dont buy the books just yet,am still have the whole language at home on paper,and am picking it up today to scan,and torrent it for another user on here [or for anyone else who wants to learn it].

This has not been mentioned, so I just wanted to ask...have you had his hearing checked? Just to be sure that his language skills are not behind because of that reason?

My son is also PDD-NOS, but is 6. I am glad you are getting him into the public preschool in the fall. It has been awesome for my little guy! Occupational therapy has been great too, and my son receives speech once a week at school.

I think that things you can do over the summer to encourage speech are probably some things you are already doing...talk to him a lot, point things out and encourage him to repeat it back to build vocabulary, read to him and ask questions while reading, even if it is just pointing to a picture and saying what's that?, encourage friendships with other kids, consider teaching him some signs as the other poster mentioned, play games with him, and encourage speech during those (my son's speech therapist did a lot of this with him and he really enjoyed it and it encourage reciprocal speech). Or just get down on the floor and play with him. If you are playing trains, talk to him about where is this one going? do you think he will make it over the bridge? etc. I found that to get my son started, we had to go on his level on things HE was interested in. Now he sometimes will talk a little on the phone to grandparents and such about what they want to say, but at first we had to go with HIS interest or topic, and still do sometimes.

You sound like a very caring mom and I bet you will do a lot to help him really thrive.

You've received a lot of great responses, I just wanted to add a little so that you know what I've done that has seemed to work for my son -- you might possibly think that it will be workable for your son as well.

My son is now 13 -- was diagnosed with PDD-NOS just before the age of 5. We always knew something was amiss with him, but couldn't quite put our finger on it. We were moving across the country right then too -- lots of upheaval.

After his diagnosis, the state (pennsylvania) started the process of getting him psych evaluations, speech evaluations, and an appropriate preschool where he had a very small class size and some really good speech therapy. This was a wonderful start.

When we moved to California, we then were given (through the state) access to 15 hours per week of ABA. Had we not been given this, I would have taught myself how to do it -- there are MANY books out there that explain ABA. I really do think this could be easily done by a parent, if outside sources are unavailable and/or too expensive. At this point my son went to a special ed kindergarten, and then had three hours/day of ABA after lunch and school. This was not radical ABA, but a very common sense approach.

We then moved back to Pennsylvania, and discontinued the ABA once our son began 1st grade. He had a one-on-one aide in a regular ed class for that year, and the next, but after that, a shift was made to multiple aides (whoever was available) at whatever class he went to -- his homeroom class, or art, or gym, etc. This made him less dependent upon one person (good idea). Also, CRITICALLY important at this stage was his speech therapist at school, who worked heavily on pragmatic language AND play skills with other children from his class helping.

Our son is now in middle school, has friends, and isn't in any special ed classes. He still has his quirks, but for the most part he is doing really well. Honor roll student and all that.

Things that have helped:

ABA (but only for a short amount of time)
Boy Scouts
Church
Band
Learning how to understand humor and tell jokes
Interacting with as many people as possible
Acting classes

Hope that this helps.

Kris

I say again..."What a WONDERFUL site!" I am taking notes like a mad woman and researching everything that ya'll have been suggesting. I hope to meet again with the school system soon as they say he must have his IEP by his 3rd bithday (the end of next month). I met with them back in July through Early Intervention but denied their evaluation b/c I didn't think it proper of me to have him assessed if we did not yet have an absolute diagnosis.

I am all over this and I shall continue to come to this site for guidance (which, I have found, is lacking in many communitites) and to follow up with his hopeful progress.

Thank you again.

Katie