Friday, September 17, 2010

A Day of Explanations

First of all, let me say thank you to all of you who lifted us up in prayer today in preparation for our parent conference with the psychologist.  It really helped us!  Let me start by saying that at this point there doesn't seem to be a lightning bolt answer, as in, "THIS IS IT!!"  The explanation is more of, well, an explanation that describes why Hayden has issues.  The what of her issues is still not 100% clear.  But that's OK because knowing the why gives us glimpses into the what, and more importantly, helps us form a plan of action in order to best help Hayden.

Ok, so here we go. There are a "multiplicity of presentations," as the psychologist put it but Hayden's two biggest issues right now are that she appears to have ADHD and she has a speech/language delay.  The ADHD is the biggest problem at this time because it is severally impacting Hayden's ability to take in information.  As far as her speech/language delay goes, the ADHD seems to be directly affecting her learning speech/language.

It goes like this:  When we learn language, we learn by taking in information, processing it within our minds, and then outputting that information by expressing (talking).

So the equation looks like this:
child sees a cat + child hears the word "cat" + child processes what she sees and what she hears = child says the word "cat" while pointing at the cat.

For Hayden, it is very difficult for her get to the processing stage of things because taking in the information relies on her focusing on it...which she cannot do without some intense work.  It is not impossible as she has made great progress in learning speech thus far in her life.  And she can continue to learn speech and language but it will be learned best when it is done one-on-one.  This doesn't mean that she can't learn by regular exposure.  But she is more likely to retain and recall the information if the learning is deliberate and intensive.  Is this the cause of her speech delay?  We don't know.  At this point, what we can observe and thereby know is that it is affecting her speech/language abilities, both receptively (what she knows) and expressively (what she can say).

The other "presentations" the psychologist mentioned deal with some of Hayden's more peculiar behaviors such as, echolalia (repeating speech), scripting (talking by quoting favorite books or TV shows or movies), the lining up of her toys, anxiety (specifically when she can't find me in a place where I'm supposed to be), and hand flapping when she gets really frustrated or upset.  These issues sound a lot like PDD-NOS which is Pervasive Developmental Disorder-Not Otherwise Specified, which is a form of Autism.  The psychologist has not ruled out that disorder completely but she feels that it is less of a concern right now because these behavior don't interfere directly with Hayden's speech/language delay.  Also, Hayden does do some specific things that often, children with PDD-NOS cannot do, such as make eye contact, and respond to and understand emotions.  (I don't know if this psychologist used the diagnostic criteria for Autism but you can read about it here.)

So where do we go from here?  Kelly and I have formulated a loose plan and most of it involves just a whole lot of information-gathering.  As far as the ADHD is concerned, the psychologist did mention medication.  She did not say whether we should or should not medicate Hayden but instead told us that it would be helpful to us to discuss medication with Hayden's pediatrician.  And that is one of our items on the "to do" list.  Just to be clear, though, neither Kelly nor I want to medicate Hayden.  There are far too few studies done on the effects of psychotropic drugs on young children.  Further, this isn't a medication, like an antibiotic, that would be taken for a short period of time.  It would be a long-term commitment.  And again, there are very few studies on the long-term effects of psychotropic drugs on young children.  We are both very uncomfortable with medication at this point.  Hayden is only 4 and there isn't enough information for us to know how her young brain might be affected.  We are focused, instead, on learning about all kinds of behavioral interventions and therapies that could help Hayden.

Also, I am convinced that Hayden's ADHD and her other issues are somehow linked.  I do not know to what extent they are linked.  But to me, who sees her, interacts with her, and teaches her every day, they do not appear to be separate problems but rather two branches of the same tree. To that end, I will continue reading and learning about behavioral therapies and interventions that have proven effective for both children with ADHD and children with ASD's (Autistic Spectrum Disorders).

The most positive thing for us was to hear the psychologist tell us that it is entirely possible that Hayden could function as any other person would as she gets older.  Yes, it will take time and plenty of effort but to hear that she could lead quite a "normal" life was very encouraging to us.  Our ultimate goal in this process has been how to best help her achieve the highest level of functionality possible.  And to hear that her highest possible level could be the same as any other kiddo was very encouraging.  As any parent, we were very distraught over the possibility that Hayden might have to struggle her entire life.  While this stage in her life might be very challenging and sometimes overwhelming, I don't know that I'd call it a struggle.  And she will make progress...she has proved that she can from all of the work and progress she made last year.

We have a list of resources and a plan on where to go from here.  I will continue to chronicle our journey as we go.  And as far as Hayden is concerned, she is the same healthy, happy little girl who loves to play at the park, watch the Wonder Pets, go to school and church, and snuggle with Mommy and Daddy every night.  Thank you all for your prayers and your involvement in our life.  We love you all and your encouragement and support help us keep our head's up!  Thank you!

4 comments:

  1. So glad to hear you all got some positive information and direction! Praise God! I am sure working on things this early in the game will make a huge impact and so much can be done. So happy for all of you.

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  2. Well, I must say that I am glad you got a psychologist eval. Just a few things I would like to add. First I don't know how much you have read about PDD-NOS but that is a VERY broad diagnosis and the symptoms range GREATLY. There is actually a national expert on autism in Norman whose name escapes me at the moment (I'll get it for you soon). It takes like a year to get in to see him but the wait may be worth it!
    Please remember throughout your journey that YOU are the expert on your child. Be teachable from the medical/psychological experts but don't ever let anyone make you think they know more about what's best for YOUR child than you do (and that is coming from a doctor!).
    Good luck and God Bless!
    Lara Mashek

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  3. Reta: Thank you so much for your prayers and concern! We appreciate them so much!

    Lara: Thank you so much for your encouragement! I would love to get the name of the specialist in Norman. It would definitely be worth the wait! :)

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  4. I'm glad you have an idea of where things are going and what to possibly do.

    I'm also digging on the doc. giving you the medicine option, but not saying it's the only way to help Hayden. I think from just that suggestion, you have found a good person to help deal with Hayden. :)

    GOOD LUCK with everything.

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