pdd-nos

[ina22]

my 3 yr old daughter was diagnosed with pdd-nos a year ago. the first problem we saw from her was her speech.until now,she is not talking...is somebody out there with the same situation??? i feel so sorry for my daughter i just want her to have a normal life..is there hope of recovery??? anyone???

[Parent2007]

Hi there,

I live in NJ too and have a 3-yr-old son diagnosed with ppd-nos since he was 2. Do you have an IEP? If your daughter is social and interactive enough at school, she could get her 1-1 ABA therapy in the afternoons at home so you can observe and learn what to do too. The school should pay for it. Especially since you have a formal diagnosis you should be able to fight for it. Also, once your daughter reaches the age of 4, it becomes easier to find a social skills group. They can be very effective and you can get the school to include it in the IEP as well.

My son just started regular pre-K with 1-1 aide, speech and OT. No more ABA since he "graduated" from early intervention. I don't think he could benefit from it much anymore anyway. My son has started to realize the existence of social norms so he tries to comply some times with more success than others. I did not believe it when his early intervention therapists told me but other kids can have a powerful influence on our little ones on the spectrum.

Hang in there. There will be better days.

[4Gracie]

Sounds like my daughter who was diagnosed with pdd-now at age 3 and is now 6.  She didn't really talk until she was almost 4.  Some other symptoms were not responding to her name, she didn't really point to objects or pull us to go get things for her, she stared blankly at times.  She IS very affectionate and played with other children some.  The best advise I can give is to get her into ABA therapy and speech therapy asap.  
There are ways to get insurance to pay for these therapies even if you live in a state that doesn't require insurance companies to pay for therapy in Autism.
She's now talking, not like a normal 6yr old, she plays with other kids and is in a regular Kindergarten class.  If you were to just watch her you would think she is just really shy.  She has issues with aggression, depression, and gets over stimulated sometimes.  We have had to try some ADHD medications so she can stay focused in class.
I would also suggest reading some books on Autism.  Temple Grandin has written several.  
The last thing: PRAY.  We are not strong enough alone.  It takes a lot of patience and love for your little girl and yourself.  Always remember you are not alone.

[Jason C Bourret, Ph.D., BCBA-D]

Some of the parent comments here are really helpful! The most important thing at this point is to get services for your daughter. ABA and speach and language therapy can be extremely beneficial. On a side note, if you observe your child becomming resistant to ABA, I suggest discussing it directly with the therapist or seeking an alternative therapist. ABA isn't just mass trialing and one of the reasons that ABA is successful with kids diagnosed with ASDs is that it's an approach that relies upon creative use of an individual child's reinforcers (this is certainly not restricted to the use of edibles for everything) to keep the child motivated and engaged. If the child isn't interested in the activity or resistant, something is wrong with the programming.

[ina22]

thanks so much for all your help.

i'll update you on whatever happens to the ABA thing and on my daughters progress in the future.

god bless you n your family

[Parent2007]

My son goes to public school in Hudson County. We are new to the school but the child study team and therapists seem quite dedicated.

ST and OT in special-ed seems to be the default answer of many public schools to children with nearly any diagnosis. If your daughter's school does not have the resources to provide ABA you have every right to request for her to transfer to a different district (especially since you have a neurologist prescribing the treatment). Find the school you like that is closest to you and initiate due process with the district to have your daughter's case addressed. You can do this yourself but it may take a lot of time and effort. Hiring a parent advocate (you can even search online for one) is a good way to reduce the burden on you and is much less expensive than an attorney. A parent advocate can also give you advice and information on your rights and options.

Before you go down that path though, have you talked with your daughter's child study team? What justification do they give you for your daughter's current placement? You can call an IEP meeting at any time to voice your concerns and discuss with all education professionals responsible for your child.

On a side note, based on what you describe, your daughter seems to be on a good trajectory. It sounds like she is starting to engage socially even if it is often difficult. Tantruming is pretty natural when speech is delayed. We experienced the same with our son. As soon as he realized though that he could ask for what he wanted the tantrums stopped. That was also the point when ABA stopped working for him.

The DIR/Floortime approach was created by Stanley Greenspan. "Enganging Autim" is one of his books and explains it well. It is geared towards building relationships rather than teaching skills which is achieved through ABA. In short, instead of demanding the child to complete a task you let the child do what he/she wants and then get involved in the same activity together in an effort to initiate reciprocal interaction.

There is a lot of debate out there about which method is right but I think both have a place in the lives of children on the spectrum. I think withdrawn children need ABA to build basic skills to start interacting and once they start engaging with the world around them Floortime starts to be more effective.

Whatever you do though, please don't give up hope. Our children have the capacity to engange with the world around them in a profound way, they just need to be shown how. Keep challenging your daughter and keep asking for a little more every day. Eventually you will look back and you will be amazed by the progress. Most of all, try to enjoy her. The more giggles the happier and healthier everyone is.

[ina22]

yes she can follow some simple instructions but not all. only those that she routinely do.

what school does your son go to? does he go to a private school? it seems nice in there. i mentioned to them that her neurologist wanted ABA for her but they decided that she needs OT and ST.dont know if we can demand for an ABA.

the teacher says she's doing good and she's participating in their activities but she tantrums sometimes..

she does not respond to her name right away.i have to call her a lot of times and sometimes  go in front of her and have to hold her so she can look at me.

help! i really dont know what to do so i could help her improve and possibly recover.

what do you mean by floortime approach?

i appreciate your time and advice.
thank you.

[Parent2007]

My son's school has a dedicated ABA class. I guess if I wanted I could put my son there (at least for part of the day) to continue with ABA training. The school also provides ABA therapy at home in the afternoons to children who need it and qualify for it. However my son had grown extremely resistant to ABA. He became so oppositional that he started crying and tantruming every time a therapist would walk through the door. I guess he was ready to move on to something different.

He hardly ever says anything at school. He will usually answer simple questions very briefly when he has to but otherwise he never takes the initiative to speak. Recently (last couple of months) he started to briefly comment socially and spontaneously about things that he sees around him but he only does that with me. Hopefully he will start doing that with others at school. For the rest, he understands what people tell him and follows instructions as well as the classroom routine.

We had his speech tested by a bunch of specialists and although his receptive and expressive language seem age appropriate his pragmatic speech is behind. In other words, he probably has not figured out why people like to talk to each other and how to do it. This is why neurotypical kids can have a great influence because they become role models. We also started following the Floortime approach at home and we are trying to incorporate the same principles in the school environment as well. He seems to be more receptive to it at this point.

Does your daughter seem to understand (even if she doesn't speak)? Can she follow instructions? If she understands language and can follow instructions I am not sure what continued benefit ABA can provide. Intensive speech therapy, social skills groups and constant modeling may be what she needs more.

What does her doctor say and the school say about your daughter? How does she do in the classroom?

[ina22]

hi there!

my daughter is already 3 and she also graduated from early intervention. 2 mos ago. does it mean no more ABA for her?like what you said in your previous message? my daughter is not talking yet.how about your son?

i hope my daughter will also improve and eventually attend a regular class..

im happy for you and your son..

[ina22]

thanks gracie!! i feel so much better now that im not alone.

She had symptoms exactly like your daughter.not responding to her name,not pointing...etc...

I'm happy to hear that your angel is now in regular kindergarten. is she still on the pdd-nos diagnosis?

i live in NJ and we applied for SSI but they denied our application.I wanted her to get ABA but we can't afford it.She's in special education,public school right  now and the only services they provide for her is OT and Speech therapy. Do you have any idea where i can get help?