Diagnosed with PDD-NOS (misdiagnosed ??) - Page 2

[Linda on the move]

Originally Posted by myson2010 

What kind of therapy did your daughter get? did it help? and how long did therapy take? 

Over the years, the recommendations have all changed, and the way things were handled with my DD is not what would be done today for the exact same issues. She had speech, OT, and physical therapy when she was little. Later she had cognitive behavioral therapy, social skills classes, and just good old talk therapy.

I do think that the various things we've done have helped a great deal, but answering "how long did therapy take" is tricky. My DD is on the spectrum. She will always be on the spectrum. There isn't a therapy that will change that.

However, she can talk and make her thoughts understandable to others, she can listen, she can read basic body language and carry on a conversation. She is comfortable in her own skin and has learned to mostly cope with the anxiety that is often co-morbid with high functioning autism. She has a life that works for her for now, and we will continue to work with her and adjust and she continues to be ready for more -- in her own time and her own pace.

She had more speech therapy than anything else, and we figured out ways to get what she needed from OT in other ways, like swimming.

But the crazy thing about raising a special needs child is that you never really know what is making a difference, or if more of X would have been better. She placed into a developmental preschool and I didn't send her, and I've sometimes wondered if she would have done better if I had. Sometimes it's just a judgement call, and in the end, we all just go with our guts and hope that what we choose will work out for the best for our babies.

[Linda on the move]

Originally Posted by fizgig 

Last Feb in Pediatrics journal there was a report that got a lot of press suggesting that up to 40% of children given a PDD-nos diagnosis before the age of 3 lose that diagnosis by the time they are 11 suggesting that many kids given that diagnosis are misdiagnosed. 

quick comment -- not meant to derail the thread.

My DD was at one point dx'ed with PDD-NOS, and is now officially dx'ed with Aspergers. At the time she was dx'ed PDD-NOS, they did not use the Asperger's label for anyone under the age of 6. One of my friend's sons was dx'ed with PDD-NOS, and is now officially dx'ed with Non Verbal Learning Disability (he'll be starting at our big state U next fall). 

PDD-NOS is often used as a label when they can tell that something is off, but the child is not yet capable of the kind of testing that will provide more detailed information. I think it would be more fair to say that children are given a more precise diagnoses as they get older. They are quirky kids who have developed atypically and needed additional help and support.

[heatherdeg]

I just want to second a lot of what fizgig said (even though she was already seconding some of what I posted earlier!  ).

Our family had both good and bad ABA experiences, but ultimately found a therapist covered as ABA although she was far more a Floortime type of therapist (we even connected her to the org to get certified in it).  But we had all the same concerns about it as Greenspan (reading his book "The Child With Special Needs" is really awesome, btw).

Did the diagnosing psychologist at least administer the ADOS test?  That would've been enlightening.  Although I'm trying to think if they're able to use it under 3yo (for the reasons stated above).

I would be strongly concerned about therapy being prescribed based on this diagnosis--especially at this age.  And we had a rather profound and difficult road with that when my 9yo was 3yo and under.  The diagnoses seem to drive a "template" of therapy that is used with all kids of that dx.  They're SUPPOSED to give therapy to address specific symptoms--in which case, the actual diagnosis is irrelevant.  And this problem doesn't end in early childhood--I've seen it (as a bio parent, foster parent and high school teacher) at all ages between schools and therapists.  In fact, I have gone so far as to withhold my son's diagnoses from a specialist just to ensure they are addressing HIS specific needs.

You have tumbled into a complicated situation, but at least you landed here--in a forum with lots of varied experiences to help.

And to that end, we've talked a lot about how to manage the circumstances, but not really touched on managing your feelings.  How are you feeling now... besides overwhelmed?  

[myson2010]

Originally Posted by heatherdeg 

And to that end, we've talked a lot about how to manage the circumstances, but not really touched on managing your feelings.  How are you feeling now... besides overwhelmed?  

Hi heatherbeg, thank you, I feel very sad, many times I just start crying because I start thinking about my little boys future? and not knowing drives me crazy, I try to remind myself to take it one day at a time and let time pass to see his progress. I have a 15 year old and a 11 year old that I have been very hard on when it comes to school and learning, as a parent I have streeseed the importance of an education and how they should always get good grades because the "mind is a terrible thing to waste" thinking back I have made it such a big deal for them to always be on high honors no less. Now I have to change my way of thinking and what my expections are... kind of hit me hard, because I just want him to have the same opportunities as everyone else especially his brother and sister. I dont want him to be isolated I just want him to be happy.   and I know I should not be thinking  that far ahead, but I cannot help it, my thoughts go back to his future with a developental disorder. how severe will it be? will he attend regular classroom? will he learn to talk? will he be happy? will he make friends? will  he be accepted? 

too many questions cross my mind, I understand no one can answer any of these questions but like any other mother I want the best for my child. 

I love him dearly and nothing will change that, and I will do everything in my power to help him learn as much as he can and enjoy the things he likes to do. 

thanks for asking no one had ask about my feelings towards his diagnosis. 

[myson2010]

I tried posting, but i get a message saying I am new and my post is being held for moderation??, what does that mean, anyone else got that message when they were new and trying to post long posts? a few sentences post? but not long ones? 

[Linda on the move]

I've been where you are, and for me, one of the most difficult parts of being a mom of a kid with special needs has been making peace with the not knowing. 

There is a lot of not knowing. There are still things we don't know about our daughter.

Some spiritual paths consider learning to live in the moment to be a deep spiritual path. Just this moment, just this breath, just today. Just to be where we are right now.

My situation is different from yours because my DD with special needs is my oldest child, and my kids are only 19 months apart. They haven't wanted the same opportunities. Different things are right for them. Different things are FUN for them, are important to them, are fulfilling to them. My goal has just been to be the best parent I can to the child I have in front of me.

A note on special ed classrooms -- I once felt the exact same way you do, but later ended up advocating for my DD to spend MORE time in sp. ed. because it was the learning environment that worked better for her, with the teacher who really understood her and knew how to reach her.

There is a huge continuum --

• from kids who are in gen ed but in pullouts a few hours a week for extra help
• to kids in gen ed who spend most of their day with a learning specialist
• to kids in gen ed who have a one-on-one aid for part or all of their day
• to kids in self contained sp. ed. classroom but spend time in gen. ed for various things
• to kids who are always in sp. ed.

It's all shades of grey, and in the end, the important thing is that a child is learning in a way that makes sense for them and they are reasonably happy. There are a lot of different ways for it to work out and be "ok."  OK is a much bigger place than we were lead to believe.

[Team Dillon]

Originally Posted by myson2010 

thank you Fizgig, I appreciate the input. Today I signed him up for twenty hours of therapy weekly. so I hope that helps. yesterday I cried all day about my boy, but today I have become determine to find him services and not let him get lost within himself. As much as I prayed and cried for this diagnosis to go away, its here infront of me. My son deserves everything I can offer him and I will. I pray that we can move forward and that he can learn to talk as soon as we can get that far, we will then set new goals for him. My son has very limited speech, and does not always respond to his name or gaze in people in the eyes all the time like typical kids would. Prayers and therapy. 

Hello...I can truly say I understand how you feel. My Dillon had several ear infections before the age of one. We didn't realize Dillon could not hear . his parents or anyone until he was 2 1/2 yard old. By 3 tubes were placed in Dillon's ear. His ENT advised he would have to learn how to talk and would have a severe speech delay. When Dillon entered daycare I decided to have him tested due to the extreme meltdowns. Of the diagnosis was PDD-NOS. His ENT suggested a second opinion. Dillon was considered high functioning. It was very hard for others to identify Autism. I cried many days and nights. Life itself became very challenging and frustrating. At Dillon's first ARD. I refused to be in denial. I stated to everyone there "I do not care about the word Autism.". What is it we need to do to help our son? Dillon did a lot of pulling and pointing whenever he needed or wanted something. Which became very tiring and frustrating. You will soon realize there's going to be a lot of changes in your life. Let me share some of mine: I decided to come out of a depressing and defeated mindset. In other words I decided to put my big girl panties on...lol. We realized Dillon wasn't affected as much as mom was. Some people were removed from my life that refused to be a positive supporter and there were those who stayed. I became Dillon's advocate. Please understand most of the time your lil will have a meltdown out of frustration due to his speech delay and not being able to communicate. Remember you will become his number savior.....patience is of importance. Now is a good time to work with him by not giving him everything he points to. Ex: Dillon would point to cookies. Before I would give him the cookie I would at least help him topronounce cookie. I would say a year later we had understandable speech. One last piece if advice. Your baby is counting on you......try not to let him see your frustrations. Always remember you are human. There's nothing wrong with going into your closet to cry, kick, or scream. Always remember God is covering you with His grace and mercy. There are many bright days ahead.

[myson2010]

Originally Posted by Team Dillon 


Hello...I can truly say I understand how you feel. My Dillon had several ear infections before the age of one. We didn't realize Dillon could not hear . his parents or anyone until he was 2 1/2 yard old. By 3 tubes were placed in Dillon's ear. His ENT advised he would have to learn how to talk and would have a severe speech delay. 

Thank you team Dillon, event though I have my doubts my son will start receiving therapy soon and we will see where we stand as time goes by. Honestly I think that it is a severe speech delay which is affecting other areas of development. for right now the goal is speech and we will see where that leads us. By the way I have been reading a lot about autism and PDD-NOS seems to be the dumping ground of we don't know what is wrong right now?! Next month when the fifth Diagnostic Psychiatric Association  Manual (DSM-V) comes out I believe that diagnosis will change to Social Communications Disorder (SCD) one more thing to keep in mind.  Doctors cant make up their mind on what is what and many will not even agree with each other SMH.... All kids are different and therapies and diagnosis will also be unique, I worry he gets the correct diagnosis so that his therapy is geared towards the best outcome. I can accept my child having a diagnosis I just cannot accept the wrong one.  Today I feel hopeful that he will do better he is a happy child and so far we do not have problems with tantrums, he does a lot of pointing and if he does not get what he wants he will try to get it himself for example he will move chairs to climb on the counter to get stuff from the cabinets or he will open the fridge and get what he wants and shows it to us. If he wants to play he grabs our hands and brings us to the play room and if he gets sleepy he will take us to his bed. During this time I do take the opportunity to tell him what he wants and emphasize words.

 How is old is your son now? what was the final diagnosis? what helped? 

[fizgig]

Myson, two books that have really helped me when we were going through the whole diagnosis journey were "Play to Talk" and "It Takes Two to Talk."  They are both geared toward helping parents encourage communication and interaction with their children no matter what the reason for their language delay.  They both have practical suggestions for games and ways to better communicate with your child and I believe they made a HUGE difference for our DS. 
 

[heatherdeg]

Originally Posted by myson2010 

Hi heatherbeg, thank you, I feel very sad, many times I just start crying because I start thinking about my little boys future? and not knowing drives me crazy, I try to remind myself to take it one day at a time and let time pass to see his progress. I have a 15 year old and a 11 year old that I have been very hard on when it comes to school and learning, as a parent I have streeseed the importance of an education and how they should always get good grades because the "mind is a terrible thing to waste" thinking back I have made it such a big deal for them to always be on high honors no less. Now I have to change my way of thinking and what my expections are... kind of hit me hard, because I just want him to have the same opportunities as everyone else especially his brother and sister. I dont want him to be isolated I just want him to be happy.   and I know I should not be thinking  that far ahead, but I cannot help it, my thoughts go back to his future with a developental disorder. how severe will it be? will he attend regular classroom? will he learn to talk? will he be happy? will he make friends? will  he be accepted? 

too many questions cross my mind, I understand no one can answer any of these questions but like any other mother I want the best for my child. 

I love him dearly and nothing will change that, and I will do everything in my power to help him learn as much as he can and enjoy the things he likes to do. 

thanks for asking no one had ask about my feelings towards his diagnosis. 

I've been there.  When mine turned 3yo and transitioned into the school district, they did a round of tests and some of the results confused the IEP team.  As I sat there, I suddenly understood--he didn't know these isolated things because after over a year of therapy--he pretty much only knew what was "programmed" into him.  He had NO generalization skills.  Effectively, he was a computer.  It was the first time I had actually cried about my son--petrified of his future.  Of MY future.  I was barely mothering material to begin letalone a lifelong caregiver like that.  People think that when they thought my ds had cerebral palsy and profound deafness at 8mo that I would've had that breakdown, but I didn't.  I just plowed forward in survival mode.  But when it hit me that this may be forever... wow.

My son is now 9yo.  He is a really bright kid and his most autism spectrumy traits are that he really has no idea when someone is taking him for a ride.  It's dangerous for sure, but he's only 9.  I have high hopes of him learning to figure that out (with help and education).  He now knows who I am, is snuggly, shows love and affection, is able to do academics at or above grade level, often makes appropriate eye contact, and plays well with the neighborhood kids his age (who don't have to accommodate him much... social interactions are our weakest point, but not screamingly).

We have done a LOT of things to help him.  He was without question worse off than what you're facing.  I don't mean to say that your son will turn out like mine, but I do mean to say that the people involved with him early on cannot wrap their head around how far he has come.

And it sounds like maybe this child landed in your womb to help you overcome some of your own ideas.

Take a deep breath.  Learn what works for you to stop the racing thoughts about what "could be".  Meditation?  Dance break?  Find something to keep you present.  And realize you have the board here for you to help.

[myson2010]

thank you heather bug, this week will be the week of interviews for the therapist that I will hire for my son. I am very nervous...I just want to make the right choice for him.... Hopefully I can jot down some questions to ask? and not forget.... today I prayed that  everything turns out well for him and God gives him a happy life. for right now loving him to pieces. 

BTW he has transitioned into a variable classroom at daycare, where there are older kids, and he is doing really good. He has officially started tantrums that last a few minutes, which I walk away telling him when his ready we can talk and a minute after I walk away he calms down....hoping these do not get worse. 

To all MOMS...ANY experiences with tantrums with a child with minimum verbal skills?????

[aspeechthx]

Originally Posted by myson2010 

To all MOMS...ANY experiences with tantrums with a child with minimum verbal skills?????

Regarding tantrums, ignoring is a really good strategy. I always tell the families I work with , "Be careful what behavior you reward because you will get more of it!" With non-verbal kids, (actually, all kids)  make sure that you acknowledge that he IS communicating something to you. So, you could say "I know you want___ but we don't have any." or" I know you are upset about leaving the park but we have to go now." This helps him know that, even though he doesn't have the words to tell you, he is still being an effective communicator. There is power in communication, whether it be with words, actions, gestures...

[fizgig]

Myson, our DS has gone through 2 real tantrum stages now and it took some trial and error to figure out what worked best.  I tried exactly what aspeechthx said and it worked when he was younger (maybe 2.5ish) but he recently went through another stage that also included lashing out at me (only me) and included him hitting some times.

For the hitting tantrums, I started off saying firmly "no hitting, we use gentle hands, ouch!" and turning away or sometimes even getting up and removing myself form him.  But I quickly found that when I turned away it seemed to escalate whatever emotions were triggering the tantrum in the first place and he got more and more upset.  (ok, it took me a few weeks to figure that out heh.)  I actually had to actually get down with him, model gentle touching, and hug/kiss him right away while saying very simple things "gentle, nice touching, mommy loves you."  This was hard sometimes because he would sometimes hit me once or twice more but then he very quickly calmed himself down and wanted reassurance and cuddles.  That seemed to work really well and he stopped after another week and a half or so.

So I guess I'd say - VERY simple communication acknowledging his feelings, then see what works best in terms of attention, your own emotional response, etc. 

[myson2010]

Hi everyone!!! busy busy busy lately.... how are you guys? 

My little boy started ABA services this week and so far they are just getting to know him.  He has adjusted well to the therapist that came by, he will be getting 10 hours of services a week and see how that goes?>! 

He has been getting speech therapy so when he saw them walk in with big bags of toys, he got very excited(loves the attention lol) and was ready to play immediately. so far just play this week, and then we will be setting goals.  

nothing to do with therapy yet... but I have noticed he is babbling a lot more, and looking at us more for communication. I am so desperate for him to start talking to us and expressing himself. I will never wish for material stuff or fancy vacations but the simple things of life.... my son to speak....