Archive for May, 2012

Asperger’s Syndrome

May 30, 2012

This is going to shock you.   (Sarcasm alert.  Mothers of Aspies learn to note sarcasm verbally as in “Ty I am being sarcastic right now).

Ty has been officially diagnosed with Asperger’s Syndrome.

It has been such a long road with so many twists and turns along the way but eight years in, I am not surprised to be here.  For those of you who were reading my Ty’s World entries last year, you realized that I had already deduced this inevitability.  I was just not quite ready to validate the diagnosis yet.   Jim and I had to work ourselves through the emotions of that.  Jim is of the “nothing is ever always true” camp and he knee jerks at labels.  I like to put words to things so labels help me.   My friend Liza told me that there are two kinds of people in the world.  Lumpers and Splitters.  Us relational folk like to see how everything works together.  We look through the lens of commonality and how things are mostly alike.  Jim is a Splitter.  He sees the intricacies of things.  He notes the fine details and separates things at the molecular level.  His viewpoint is most often one of difference.   Opposites attract you know.  (Note to Liza:  I can’t tell you how often I have been talking to people and said “Lumper” or “Splitter” in my head.  I miss you my Lumper friend.)

As a result, it took us several months to arrive at a decision to seek a diagnosis.  There were two determining factors.  The first was that we realized that educating the people who live in Ty’s World is one of the most important things we can do for him.  While we can do that without a label like Asperger’s, it sure is easier just to give people a word that they can relate to (or that they can look up).   When I first starting writing those Ty’s World entries last year, I had a lot of apprehension about it.  Was canonizing my thoughts on the matter a wise and discerning move on my part?  Would it ultimately help my child or backfire on us and harm him?  Because of the amazing circle that we have been blessed with, hindsight proved it to be the right course.  Our friends and family surprised me with their investment.  Not only did they read my words but I saw so many loved ones come across the bridge and meet Ty on his side.  They were eager to actively love him and were (and are) willing to do whatever it took.    While I didn’t say that Ty had Asperger’s, I did describe it and that information helped other people in Ty’s life better understand the world he lives in and how he relates to them (and how to relate to him as well).

The second factor was that Jim and I think it might be beneficial to Ty to seek out Speech Therapy.  Did you know that “Social Therapy” falls under the umbrella of speech therapy and that social therapies can be really useful to children with Asperger’s?    This particular therapy concentrates on appropriate socialization and includes things like teaching kids to recognize non verbal communication and how to appropriately engage others.    I am still in the “doing my homework” stage but I would bet there will be other benefits (like an Aspie Camp at The Clubhouse Center) that we may want to utilize in the future.

Because I had already done so much research on my own, I decided not to take Ty to a private place like the Melmed Center or Dr. Gentry’s (though I have heard good things about both).  Instead I chose Phoenix Children’s Hospital and picked their Developmental Pediatrician who specializes in Autism/Asperger’s.  She was booking 12 months out so when they offered to let me see her NP two weeks ago, I jumped at the opportunity.   Prior to our first evaluation, I sent a long letter detailing my instincts on the matter (again…aren’t you surprised I did that?), sent all Ty’s medical records, and included two different Asperger’s evaluations that Jim and I had done on our own.   We met with the NP for about an hour and a half and when we left she said “I am an NP and can’t make a formal diagnosis but I will slip you in to the Dr.s calendar and I can tell you right now that you can expect to leave with an Asperger’s diagnosis”.   I could tell she considered all the evidence and thought it was a slam dunk case.

Today (May 30th, 2012), Jim and I met with the Developmental Pediatrician.   We brought in more evaluations that the NP had given us.   We also went through the DSM IV (which is the official diagnostic standard).  In order to be diagnosed with Asperger’s you need to have at least two of the first category and at least one of the second category.  Ty qualified in 3 out of 4 categories in category 1 and 3 out of 4 categories in category 2.   When we left ‘the Dr. said, “By the way, I had the Asperger’s pack all ready for you before you even got here.”  (She had read all the NPs notes and concurred).  She also sent us home with a packet on ADHD Type 1 (Combined).  He already had that diagnosis but she wanted to make sure we knew that Ty’s ADHD is not part of his Asperger’s but a co-morbid condition alongside his Asperger’s.   (Interesting piece of the puzzle because not all Aspie’s have ADHD but they often do).

So there you have it…

I don’t have the energy to post a bunch of information on Asperger’s tonight but as you can imagine, I will include information regularly in my postings.     Just as an overview though…

Asperger’s is an Autism Spectrum Disorder.  It is differentiated from Classical Autism due to two factors (depending what you read you’ll see one or the other – experts can’t make up their minds).   One factor referenced is that individuals diagnosed with Asperger’s have normal to above average intelligence and individuals diagnosed with Autism have below average intelligence.  While I read that description today, I don’t think I quite agree with that one because I have met some people with Autism that I believe to have at least normal intelligence.  The other factor (and this is the one that the Dr. used to differentiate Asperger’s from Autism) is that individuals who are diagnosed with Asperger’s did not ever have a language delay and those diagnosed with Autism did and do have language delays.  Aspies may be socially inappropriate but they do communicate.  It is believed that Albert Einstein had Asperger’s.

Is it High Functioning Autism?  Depends on who you ask.  Even in the package that the hospital gave me, some articles interchanged the labels to mean the same things and some differentiated them by saying that High Functioning Autism is not Asperger’s but Autism in individuals with normal intelligence.   Apparently, in the past AS and HFA were interchangeable terms and now they aren’t (or they aren’t in all circles).

Additionally, when the DSM V comes out, word is that the fifth revision (if formally approved) will move Asperger’s under the category of Autism officially and anyone with an Asperger’s diagnosis will now have an Autism diagnosis.   This because many experts believe it to be hair splitting to differentiate the two when the predominant symptoms of Asperger’s are Autism symptoms with the primary difference of language skills.   The down side is that some Asperger’s affected individuals don’t want to be labeled with Autism.  The up side is that it might help with services if individuals with Asperger’s get an Autism diagnosis.  (Basically Asperger’s will have a subclass where in the DSM IV world it technically stands on its own as an Autism Spectrum Disorder and not “Autism”.   Asperger’s generally affects boys more than girls and is more rare than  Autism with 2 in 10,000 children having Asperger’s.

And what causes Asperger’s?  Well no one really knows but reading material suggests changes to the frontal lobe that occur during embryonic stages.   In Ty’s case though, I don’t even wonder about this.  He sustained brain damage via intraventricular hemorrhages when he was born prematurely at 25 weeks and Autism as a result was one of the first predictions his Neonatologist made as a distinct possibility due to his severe bleeds.  I am (oddly) grateful that at least we know “why”.

I need to climb into bed now but I am sure this will be a lengthy conversation that continues through years of my blog threads so for tonight I’ll leave you with a couple of Ty funnies.

Today while waiting in the Doctor’s office I say to Jim, “Wow!  Ty is on the HD side of AD today!”

Ty then says, “What is HD?”

“It is Attention Deficit Hyperactivity Disorder”.

While I am saying this to him, he loudly interrupts me with “HIGH DEFINITION!”

LOL.  Only Ty….

A few minutes later he was asking me when OT started in the morning.  Because we have been studying digital clocks in math, I said “It is 10:00 but is it A.M or P.M?”.

Ty says, “A.M.!  That stands for Awesome Morning!”

Don’t you love him?

The ants go marching one by one hurrah…hurrah.

Sometimes when a plan doesn’t come together, it turns out to be a most fortuitous occurrence.   At Zoe’s 1 year shoot, the sealed cake was set on the sidewalk while we were taking shots of her on the grass and the ants got to it before we did.  We really didn’t want to miss the planned cake smash portion of the session and since Zoe’s family lives nearby, it made it easy to do a quick makeup session in my home studio.   She was A.D.O.R.A.B.L.E.  It took her a minute to dive in but once she got a lick, she was a fan.  I love all the blue and pink hand and footprints all over.  (Good choice on the icing colors T. !)  I am getting anxious for Troy’s cake smash session.  I love them!

I love her little turned in feet.  So dainty.

Easy to see why Zoe is so photogenic.

I know I am posting a bunch but I haven’t had any one year olds for a bit and I couldn’t resist.   It was so fun to get to see little Zoe Star again.  I love it when newborn clients come back so I can see how they have grown and cuddle them again.  You may remember Zoe’s newborn session because there was quite an ironic story involved.  To refresh your memory…

I had two newborn clients scheduled last May that were due around the same time.  Because of that, I was keeping track of both mamas via facebook so I could manage my calendar better.  Much to my surprise, I noticed that both moms went into labor at the same time.  Literally the same time.   There were several coincidental comments that I observed so I had to do some sleuthing.  At the end of the day I discovered the following:

1.   Both moms were expecting their first child.
2.  Both moms went into labor at the same time.
3.  Both moms delivered at the same hospital.
4.  With the same Doctor!
5.  Both moms had c-sections.
6.  The Doctor delivered Grady and then went straight in to deliver Zoe. (Or maybe it was the other way around?  I forget.)
7.  Both clients had hired ME as their newborn photographer and they did not know one another.
8.  They both lived in the same neighborhood!

Needless to say, Zoe and Grady were destined to be friends so I arranged that.

I think Zoe and Grady were my last sessions before Troy arrived in June and then my schedule slowed down.   I remember how fun it was just finishing up on newborn processing only to have my OWN newborn arrive.   Gotta love those two month pregnancies!

It was so good to see you again sweet Zoe and family!

Seth

May 24, 2012

This is Seth.  Seth turned 9 in April and it was both my privilege and BLESSING to get to take some 9 year old pictures of him.

You see, 23 years ago, I met his mama.  It was Cinco De Mayo.  We were high school sophomores and both Heidi and I had been invited to a mutual friend’s birthday party.  It was love at first sight.  We had both prayed that God would send us a girlfriend that would be a kindred spirit and God answered our prayers.    We were dreamers and we always imagined the fun we would have as mama’s and watching our children grow together.   As it turned out, shortly after Jim and I married, Heidi became a world traveler and spent the next decade and a half (about) across the world and then across the country from me.   In October of 2011, she returned home to Phoenix and for the first time, we are getting to watch our little boys grow together.  I have to post several pictures of Seth and Tanner because they are so cute together and really enjoy one another’s company.

Aren’t these two handsome?  Biased?  Who me?

Typically, I don’t advise including my four children in a photo shoot but in some instances, it’s magic.  This was one of them.  Tanner, Ty, Tori, and Troy were quite entertaining for Seth and I love looking at his cute grins and remembering what he was grinning about.

I have been drooling over his mother’s hair for over twenty years and now I am in love with Seth’s too.  So beautiful (and I love it long!).  Imagine how long Tanner’s hair might be if I didn’t have James P. giving me fits about it?  Tanner’s hair is just too amazing to cut short!  Why oh why can’t Jim cooperate with me? (And if you know my honey, you are sitting at your computer saying to yourself “Uh Doni – you really shouldn’t have put that in writing because if he reads it, he will be even more stubborn about it and will likely take the shavers to his head tomorrow!”  I am banking on the fact that he doesn’t read my blog.  My man is all things beautiful but he can be a little difficult to negotiate with at times.  Hee hee.)

He looks just like his mama don’t you think?

Had to get that shot because that one has a definite window of opportunity.  I don’t think I could pick Tanner up like that if I had to at the age of 11.

I love these relational shots.  While newborn photography is my first love, I have surprised myself with the realization that I LOVE family pictures.  Capturing families interacting with one another just melts my heart.  I want a picture to say more than “what we looked like when…” – I want it to reflect “what we felt like”.   I was moved by these shots of Heidi and Seth and wanted to share them with her privately first.  We had a (rare) opportunity for a girl date and I gave them to her while chatting at CA Pizza Kitchen (I love that place).  When I saw her face (and her tears), I knew she saw exactly what I did.  The depth of her love for the greatest joy of her life.

On a silly note…my cousin Jarrod bought mustaches for Seth for his birthday.  I would think that was an odd choice but it made perfect sense to me.  My Aunt has great affection for toy shopping and she has a rare talent in finding unique items that a 9 year old (or 4 or 15 year old) would truly celebrate.  Apple didn’t fall far and Jarrod has now proven to have inherited the gift.  It was WAY cool that there happened to be a red mustache in the bunch.  Looked pretty awesome on Tanner.  They were all trying hard to keep their staches on thus the serious expressions.  Plus that just made it funnier so we encouraged it.

Jim pointed out (because he would) that the mustaches are upside down.   And again, that made this even more funny to me because of course my kids would have put them on upside down.  Heidi and I may be the only ones grinning at these shots but when you are wrangling five kids for a photo shoot with mustaches, well it just doesn’t get much funnier than that.  Trust me.

 

 

 

 

Little Monkey

May 23, 2012

I have had to laugh at how often Troy gets confused for a girl.  I think it is his eyes and eyelashes.  He IS a pretty baby.  He just is.  (These shots taken back in March).

TROY UPDATE

Let’s see….

Troy has six teeth now and almost 8.  His eye teeth broke through on 5/8/12.

As of this month, he now has five words:  Dada, Mama, Up, Hi, and Ya.

His favorite things:  Troy loves his pacys to sleep but doesn’t need them any other time.  He loves to play patty cake and will shake my hands indicating he wants to play.  His very favorite thing is bear hugs and he hands those out in large doses all through the day.  He loves to squeeze you really hard and grunt.  That is also my favorite thing.  :)    He is eating more table food and we think he is getting better with liquids but we are still thickening his bottles.  We will have another swallow study done next month.  He enjoys eating.  :)    He also enjoys emptying out my home school cabinets, removing the clean laundry from my chair onto the floor, and emptying his pant drawer in his room.  That I do not enjoy.   He LOVES toys.  We have even watched him attempt to stack blocks (copying Tanner) and I think that is pretty impressive for his age.  He is transferring between furniture like a pro and sometimes will take one independent step to do it so walking won’t be too far off.  I suspect he will be walking well before his one year corrected birthday though jury is still out on whether he will walk before his one year actual.  Wouldn’t surprise me at this point.  He stands independently once in awhile but not too often yet.  Jim calls him Mario Andretti because he crawls so fast.  He is on the MOVE.  Busy little bee.

His skin is looking so much better.  I am slowing down the triamcinolone and can use mostly just vanicream.  Thankful for that.  He is still on his reflux medicine and still seems to need it though this is improving at least.  He is a great sleeper and is sleeping 9:00 PM to 9:00 AM pretty consistently.  He is at the restaurant unfriendly stage though because he is SOOOOOO loud.  I mean SOOOOO loud.  Super expressive baby.  We never wonder what he is thinking or feeling.  He is very clear.  He gets that from me.  :)

One thing that is awesome about having a fourth child is that there are three others to entertain the baby at all times.  Another plus for homeschooling too.  Troy travels between mama and his siblings all through the day so he is always entertained.  He tends to hang out with Ty the most.  Ty carries him in there while he plays video games and Troy plays with his own toys beside Ty.  Keeps them both very content.    I don’t think I realized what a mutual blessing Ty and Troy would be to one another but I see it everyday now and I am just so thankful God worked it all out as He did because it couldn’t be more perfect.    I love how with each child I have settled into the feeling of utter contentment not even remembering what life was like without them.  My heart is so full with the for most amazing children and I am just so grateful.

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Tori has been our little monkey lately.  We attempted a cleaning at the dentists office again.  She started out okay.  She was white knuckling the chair but got through her Xrays.  When the teeth cleaning started though she started crying.  She was WAILING at the top of her lungs for effect.   I was trying not to laugh at the drama so I wouldn’t make it worse.  It was ridiculously over the top.   The dentist continued with the cleaning despite her ear splitting crying because she actually WAS cooperating – she was just protesting as well.  In typical Tori fashion, she brightened right up the minute he was finished, let everyone know that it didn’t hurt, the toothpaste was good, and that she did a good job.  Her brothers laughed as did the whole office.  When Ty asked her why she cried she just said “I don’t know”.

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Tori:  Mommy you just passed OT (Occupational Therapy for Ty).  You were driving too fast.

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Ty:  I have to go to the bathroom!

Tori:  It’s right there Ty.

Ty:  This is OUR house.  I KNOW where the bathroom is.

Usually he doesn’t notice when she is mothering him but occasionally…

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I have several more Tori stories for you but must be off to other things today so until later…

Happy Eleventh

May 22, 2012

My precious Tanner is eleven today.  I look at this picture and get choked up because he looks very eleven.  He is so beautiful – SO BEAUTIFUL.  He is losing that young boy look and transitioning into that tween look and it kills me.  He catches me staring at him all the time (which he gets all shy about of course) and I always tell him that I just can’t help myself.  He is such a work of art to look at.  I love this boy so much!