Tuesday, September 28, 2010

Esprit De Corps

Tonight I attended my first parent's support group meeting for parent's of kiddos with ASD's...(short for Autistic Spectrum Disorders).  What a pleasure and relief to find other parents who are riding this same emotional and parental roller coaster!  Much of our evening was spent sharing our background about our children...how old they are, when they were diagnosed, what they're like, what they struggle with, what WE struggle with, and lots of helpful ideas and tips.

I am glad to have found these people.  But I am fixating a little on something one of them told me when I shared our story.  I mentioned that comparatively, Kelly and I are still in the beginning stages of all of this as we're still trekking to nail down the diagnosis and formulate a plan for therapy.  I mentioned that we're still experiencing the grief process where some days we're mad, some days we're in denial, some days we're depressed, and some days we're good.  This group member said, "That never goes away."

There is a practical realization of this idea and at the same time, an overwhelming sense of heaviness.  There is very little preparation (outside of much prayer) that comes to mind.  And sitting here thinking about it, isn't all life that way, too?  We all have good days and bad days.  But I think, for me, the overwhelming heaviness comes from knowing that as far as Hayden is concerned, these days will always stem from the same root.  Oh, if I could pluck out that root and burn it!  How angry it makes me that I can't fix it!

But I have hope.  I have hope that her issues seem to be more mild than some.  I have hope that maybe one day these challenges that we face with her will be less challenging.  If I'm honest, I want it to get easier because we know what to do with the challenges.  But nothing is ever easy.  I've learned that by now.

We'll keep pushing forward though.  My husband and I will keep making jokes with one another because we deal with things in laughter.  We'll keep loving our baby and fighting for her rights and for resources to help her.  And I'll keep praying and learning and trusting that God knows what He's doing and that no matter how the evidence seems to point to the contrary, He has our best in mind.  My next post I think will be a good deal lighter...We love you all. :)

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!

Thursday, September 16, 2010

Antici................................pation.

Kelly and I have discovered that whenever we go to the psychologist's office for testing, we leave in bad moods, feeling very discouraged and frustrated.  I think this is due largely to our being in the "in-between."  That is, in between a firm diagnosis and a big, fat question mark.  The diagnosis is important to us because it will  help us lay a foundation on which we will build the way in which we approach learning, behavioral intervention, etc.  I just don't want to have spent all this time and money and effort to hear something ambiguous and unhelpful.

Tomorrow we will know...I hope.  This past Tuesday, we were supposed to finish testing.  Hayden was going to go to school on Friday and Kelly and I were going to go to the parent conference.  Unfortunately, Hayden had an off day and was just not cooperative.  She didn't throw fits or anything like that but her attention span, which is always so short, was practically non-existent.  She managed to actually get through about 3 or 4 questions but with extreme effort and much repeating on the parts of myself and the psychologist.  So Hayden will go with us tomorrow, finish the testing, and then we will do parent conference.

I know I will be nervous tomorrow.  I was a bundle of nerves on Tuesday.  I just want to get this done so we can press on and so we can know the best ways in which to press on!  Pray for us, if you will.  I would be so appreciative.  We'll let you know how it goes!

Friday, September 10, 2010

Expectations

I've always thought of myself as a person who did not harbor a lot of lofty expectations about life.  I expected to grow up.  I expected to always love and be loved by my family.  I expect my marriage to last.  I expect to die someday, too.  But all those in between phases I purposely left as blank as I could.  I wanted to be open to new experiences, ideas, and possibilities.  I didn't want to be demanding or set my own plans so firmly in stone that if new ones came along I would miss them...or reject them.  A good plan, for the most part.  Until one day--or a series of days--I realized just what specific expectations I had subconsciously determined would be the way of my life...or more specifically, my child's life.
I expected my daughter Hayden to get older each day.  I expected her to begin eating solid foods, walking, laughing, wearing larger clothes.  I expected her to outgrow shoes and toys...I expected that she would begin talking.  I expected that she would have conversations with her daddy and I.  I expected her to one day start school and make friends.  I expected her to meet each and every milestone, developmental marker, and grow into a beautiful, young lady with dreams and aspirations of her own.
For the most part, these expectations are pretty run-of-the-mill.  But the older she became, the more something just didn't seem quite right.  She is, overall, a very happy child.  She loves to play with toys, read books, watch kid's programs, and play at the park.  But my Hayden didn't call me "Mama" until she was nearly 3.  Her speech was slow in coming.  We  had our worries and did our best to seek guidance and advice from experts.  We talked to her; asked her questions; sang her songs.  At times, it seemed as if she wasn't really listening to us at all.  It almost looked like she was blocking us out.  She didn't seem to understand certain questions.  If I pointed at her in the mirror and asked her, "Who is that?" She would reply, "Hayden!"  But if I asked her, "What's your name?" I could tell that she didn't understand the question.
And then there were her bears.  She was given a set of sorting bears for her 2nd birthday.  She would dump them out and line them up.  She would do this on the couch, on the floor, on the quarter-inch ledge of the open drawer.  This is something she still does.  She has branched out from the bears and also lines up her "babies" (stuffed animals) and a bowl full of small, plastic animals.  She has started lining up the bears, babies, and animals in graceful swags and curl-i-cues.
This called into question her perceptions of the world around her.  After a year in Head Start and speech therapy, we decided to have her tested for a formal diagnosis.
This is where my expectations for my child began to crack.  I must be clear:  I still expect that she will grow into a beautiful young lady and be all that God intends her to be.  But her growing-up years will not be typical.  She has not met some of those milestones and developmental markers.  Those she has not met she will meet but with different challenges than the typical child.
So, I came to a place where I needed to realize and admit that I DID have expectations.  Those expectations were not unreal but they must be set aside so that I can understand my daughter and begin to see the world through her eyes.
That is the point of this blog.  We have not received a final diagnosis.  We will next week.  But the horizon of our "new" future is just visible and it is overwhelming, sometimes.  I have a new expectation: the next year or so will be, most likely, the most challenging of our life.  But I believe God STILL has a plan for my Hayden.  He still has a plan for us.  And so my adventure with the little lined up bears begins.