Hello,
I am devastated. We were just told that our child who just turned 3 has a "bordeline diangosis" of PDD NOS. That she fits the diagnostic criteria but that they "struggled" with the diagnosis, so dh and I can decide for ourselves whether or not we want to label her. We are trying to get her further assessment and treatment but I have made a bunch of phone calls and it seems that, in these summer months, that everyone is on vacation right now!
She was having such a bad day on the day of her assessment. But of course, the psychologist's response to that is that she should not be acting the way that she was even on a bad day.
We are just so confused. She definitely has concerning behaviors. She repeats herself, refuses to be potty trained, and used to love lights and ceiling fans (she barely notices them now). She echoes with unfamiliar people, at times, but this and all other concerning behaviors have improved on their own without treatment. She sometimes has a bit of a hand flap but it is barely noticable, and is usually only when she is running and excited. She talks a lot but can have only simple conversations. On the other hand, she LOVEs people, and interacts with others very well, often even in new places. I can bring her anywhere, she listens well, and she is happy and well adjusted. She is easily comforted and has friends. She has a great imagination with great pretend play and does not have any repetitive play patterns. She is very bonded to her family and friends. She generally has great eye contact with strangers, (but did not have good eye contact on the day of her assessment because she was happy her dad was there, so she kept smiling at the examiner and then panning over to her father). She eats and sleeps well, and she is just in general a great kid.
We have been told that PRT is the way to go, but really, we already do these things with her so it is hard to see how that may help. We have also been told that ABA is the way to go, but were told by the critics that it is "rote" teaching, and she seems to need the most help generating language of her own. But of course I am not knocking any kind of treatment, we will do whatever works. It is just so hard to know what will work when we are dealing with a child who is already so communicative. we want to treat her symptoms, but that is easier said than done when we really don't know what the cause of her symptoms are.
I know that many of you parents struggle with difficulties far worse than the ones I am describing, but with all of this confusion and uncertainty, I appreciate being able to tell our story. Any thoughts or insights would be most welcome.
Thank you.
Confused? Welcome!
Ask me on a given day whether my kid is on the spectrum, and you may hear yes, or you may hear no.
We went through EI and 2 years of Special Ed services, and nearly a year of Kindergarten, without diagnosis. I think here and on the education forum, you will learn that many people go with a diagnosis, even when in doubt, because ... it GETS YOU THERAPEUTIC AND SPECIAL ED SERVICES from the school.
And they DO help! So ... congrats on having a clinical diagnosis, because it helps. The therapies are all good things, and if she matures out of the diagnosis through the therapies, so much the better!
My daughters school said ya she has signs but they don't think she has it? She does have either aspergers or pdd. They just don't want to have to increase her funding. Her therapy Combinations are usually for kids autism/pdd/asbergers. Take the titleHi froggiemom,
In reading your post, I'm trying to figure out what they based their dx on :)
Kids who are functioning at the level of yours, at that age, tend to develop pretty well over time (and I have personal experience with kids like yours), and as you mention, they will develop on their own, just like any kid. I know the diagnosis is tough and you do need to deal with it, but do know that her prognosis isn't so bad. Avoid the horror stories for now - focus on the positive outcomes, and there are many - some right here on this forum. She sounds like a beautiful child, she will grow and develop as any child will, though it may take her longer to learn certain skills or reach certain developmental milestones. Any educational therapies that you can get for her couldn't hurt, and may help quite a bit.
ABA is not 'rote teaching', but it is just teaching - meaning, it's no magic cure. It's a manner of teaching that has proven to be effective in teaching all sorts of skills to all sorts of people. Most modern ABA programs are pretty kid friendly, so if you can get in one, I certainly wouldn't discourage you from doing so - though I would check out the program carefully, talk to the people there, etc - all common sense stuff. It can be quite expensive, though, so if your child can learn via other methods (and it sounds like she can), then you'll need to carefull weight the cost vs. benefit when making a decision. Kids who have good expressive and receptive language and few behavioral problems can learn the same skills that are taught via ABA by more cost effective small group instruction or traditional therapies (speach and language, etc). I simply hired a tutor to work with the girls several days/week, teaching them the skills that are outlined in a popular ABA/VB curriculum - and they are mastering the skills rapidly - and our tutor is relatively inexpensive compared with the high end ABA programs - so if you're paying out of pocket, there're many ways that you can save yourself some money yet still receieve effective tutoring.
Also, do not underestimate the value of your interactions with her. You are and will always be her best, most important teacher. Therapies, as you will learn, while useful, are not arcane magic only accessible to those with years and years of specialized training. Every interaction you have with her, every shared moment, every emotional connection, recipricol play, conversation - it's all "therapy". When you've identified her specific areas of need you will, as a caring parents, automatically tailor your interactions with her to help her develop in the areas that she is behind.
Is sounds like she is developing beautifully, and now that you've identified some challenges, you can work to help her overcome those to acheive her potential.
PS - what's PRT?
Have you done your own testing? Like at ChildBrain?
http://www.childbrain.com/pddq6.shtml
I can really relate to what you are saying and I can say I know exactly how you feel. It is wonderful that your daughter is so verbal! I think the hardest things to teach children your daughter has already mastered, like social skills and showing emotion. The way I look at it is the services won't hurt her!! From what you describe whatever is going on with your daughter it seems to be mild. Don't get caught up in the label, I did and now I regret it.you are me--however I am a full 2 years out from getting the diagnosis--and so I have done all of(well, most) of the processing, grieving etc. that goes along with it.
This is just my opinion--but GO WITH THE LABEL! It opens up so many doors for you interms of support, services, treatments, schools, etc.
Of course-there is a flip side to that coin to that can be a struggle.
We had 1 year of EI(we were really able to get a max amt. of services b/c of the dx), and gained entry in the autistic/sp. ed pre-k--and automatically qualified due to the dx. my son is VERY high functioning(before the diagnosis we had to work to convince people there was something going on)--and he is now in an inclusion class--and im guessing will be mainstreamed for Kindergarten...all thanks to the myriad of interventions we got early on(and mix of luck, genetics, etc I guess).
good luck, and hang in there.
jen
I appreciate the fact that you do not want to have your child get a "label," but I too am of the mind that if it helps you get the interventions now...worry about the label later. You are looking for quality of life...take as much as you can get.
Given that, you cannot "get" much without the label! This is tough.
We have made friends recently with a family who has a child who is living with "Chromosome Eight Deletion." What? Yeah, me too. I had never heard of this. It is VERY rare. All sorts of prognoses for this child especially physical, but on the physical side he came out fit as a fiddle.
We had this family over last weekend and I have never seen a child who presents more "classically autistic" than this babe. This beautiful little guy walked into our home, reponded to no one. He appeared to almost be floating. this was how he was part of the time. The rest of the time he was moaning and/or crying (though he had a great time in the pool). Nary a word escaped his lips.
Mom was constantly saying how "advanced" BB is and was curious as to how I was able to get him services through the summer when the school is so tightly locked down. I told her how I fought and went to the special ed coordinator et al and then I asked how it was possible that their babe could be denied service (because she asked).
The answer came down to this: He was never given a spectrum diagnosis.
He PRESENTS ALL of the spectrum-type symptomology, but never diagnosed on the spectrum. I told her to get her butt to the pediatrician and have him rewrite the dx to reflect the symptoms as well. She did...he is going to be in the ABA class effective immediately since that letter.
Awesome right. Well, there is another brief part. She was struggling with whether or not she wanted him to be in the class as she wants him as "mainstreamed" as possible. This kid needs this class. "Crawl before walk" kind of thing.
Long story already long, she too worried about the label and mainstreaming and everything else and she was right to do so. We need to look ahead and see the impact of what we do now on the later, but...being in the now is ultra-important. What does your babe need right now?
I hope this helps.
Namaste.
She will do great with therapy..most of her skills now are so wonderful!!
My dd needed lots of therapy to know the things your daughter is doing now! It is so wonderful she is social and has friends to me that is the hardest out of every thing to teach. Labels come and go..Sarah lost her label of autism over a year ago & is now considered provisional autism. She needed intense ABA for over 3 years to get here but she started out very autistic. You will find the most caring and understanding...knowlegable people on this board and the dads on here are amazing!
Read all you can and ask us anything:) Lots of girls too here:) We all have done one therapy or another...cons and pros with most of them. Dont dispair with the label...look at your daughter right now..she is the same little girl you love so much right? That love will only grow stronger and you will too:)
We are here for you:)
Blessings,
Froggiemom,
I can totally relate to you- my son also has some great skills and for the most part, im pretty optimistic about his prognosis. However, get all of the the free services you are entitled to..they certainly can only help your dd. Its easy to see why this is called a spectrum disorder- no two kids are alike and all will develop in their own way. The therapeutic interventions will only enhance their development.
My son got a "borderline" PDD-NOS dx at 2 and by 2.5 the docs (2 different dev peds) really felt that while he had some ASD traits, he was not "on the spectrum." He too is very social and while his language was delayed, once it started it continued along the typical pattern and at 3.5, he is no longer considered to have a significant language delay. He also has sensory issues which are resolving with therapy.
We did not go with the dx at 2 as we felt the doctor had not gotten an accurate view of him. And, we seemed to have been right as 6 months later they no longer wanted to give him the dx. But, we did get EI services - ST, OT and Special Ed. You do not need a medical dx to get services so if you're not comfortable with it, don't use it. Once it's in their record, it's there. The dev ped told us to call her if we had problems getting services and she would give us the PDD-NOS label if we really needed it. For educational purposes, my son got a "developmental delay" dx from the school psychologist and we have had no problems getting any services. I didn't think ABA was appropriate at all for my son so we went with more of a floortime model.
PRT is Pivotal Response Treatment (see book by Koegel and Koegel, out of Santa Barbara CA) is a form of ABA. They believe that by targeting key (pivotal) areas they can generalize the training more and get better successes. We were recommended that as well. Sadly, this is outside of our price range since the SD does not believe he qualifies. So I don't know much. Ask in a month or so wehn I have finished the book (amazon.com has it, I think)