Archive for the ‘Ty’s World’ Category

MRI of Ty’s Brain

August 17, 2013

TyMRI_0002
Ty insisted that the neurologist print a copy of his MRI showing his eyeballs for him.  He was certain everyone would just love to see this.  He laughed his head off.  Love it don’t you?

Finally, after all these months post his week long stay at Phoenix Children’s back in Feb, we met with the neurologist.   Ty’s headaches have been regular (2 times a week or so) but I rarely have to treat him with the coke/migraine cocktail because he gets through them okay without much complaint.  His pain tolerance is very high so it is always tough to really know.  The coke incentive doesn’t help matters either.  In fact, all my kids have regularly come down with strange occurrences of “headeggs” (that is what they all call them).   The Dr. I saw last month explained the MRI results to me and I wrote about that but a picture is worth a thousand words.

 

Sometimes miracles do hide!  I think this is amazing.    According to the neuro, she would have identified Ty as being a baby born very prematurely (under 28 weeks) by just looking at this MRI because only extremely premature babies have under developed (pancaked) cerebellums that look like this.  Jump down to my yellow highlights on the second picture and I will explain.

TyMRI_0003 TyMRI_0003b

 

Can you see here how the right (picture left) side of the cerebellum is completely under developed compared to the left side (picture right)?   The cerebellum is responsible for several functions of the body including:  fine movement coordination, balance and equilibrium, and muscle tone.      Ahhhhhh!  Now that makes sense doesn’t it (in regards to some of Ty’s struggles)?    The brain is so cool.  I think it is really neat to be able to see for myself, the answer to some of our “whys”.   Why did I have Ty in OT for over a year and he still can only write his name?  Well…folks…I am now grateful that his fine motor skills are as good as they are considering half his cerebellum is essentially missing!  Unlike other parts of the brain, the right side of the cerebellum directly relates to the right side of the body.  This explains why I have been thinking that Ty actually does better with his left hand.  His whole right side is weaker than his left, but not nearly as significantly as you would think based on this picture.

In fact, the Dr. kept commenting over and over how totally amazed she was at all Ty CAN do.  She kept doing muscle and coordination testing and I could tell she was fascinated by what she saw in this picture and what she saw Ty actually do.   In addition to the cerebellum issue, there is also the swollen ventricle issue.  I have explained this before but no one will remember so I’ll give it another go here.   The reason the neonatologists predicted Ty to have some “quality of life” issues was due to his grade 4 right, grade 2 left, intraventricular hemorrhages.  Sometimes those ventricles bleed out when babies are born very early.   Grade 4 is the worst.  In fact, two grade 4 bleeds are considered catastrophic and often result in death and Ty was at one time labeled a 4 right, 3 left.    The brain does not allow for dead space.  When Ty’s ventricles filled with blood shortly after birth, the swelling killed off surrounding brain tissue.  The brain does not allow for dead space, therefore the ventricles (though the bleeds resolved) never resumed their pre-bleed size.   I wish I had a comparison of what normal 9 year old ventricles would look like but I couldn’t find that.  All the MRI images I found on the web were of different views (slices) so it wasn’t orange to orange comparisons.  At any rate, it has been explained to me many times that those ventricles I circled above are bigger than they should be which means the brain has been killed in the areas of their enlargement.   This is how Ty got a PVL (periventricularleukamalacia) diagnosis.  Can you believe I can spell that?  Years of practice.  :)

Amazing isn’t it?  Someone at the Dr.s office called me on my cell yesterday to cancel an appointment and even SHE knew who Ty was and had talked with the Dr. about this MRI because she was going on and on about how impressed the Dr. was with Ty.  If you are looking for a good neuro at PCH, I really like Dr. Lewis a lot.

No real reason to follow up with neurology for now unless his migraines return with a vengeance.  I hope not.  His Daddy is having a heck of a time with them this season.  No fun.

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In preparation for school to start in a few weeks, our littlest has made it a habit to go around waking up his siblings at 7:00 AM.  I hear this loud “Hiiiiiiiiiiiiiiiii” and next thing I know, at least 3 of them are cuddled up on the couch watching cartoons.  I love seeing Troy with his pacy, sitting on Tori’s lap or cuddling with her at night or in the early morning.  So precious.   He has also woke up, crawled into his high chair, and called me out of bed to come serve him breakfast.  Those mornings are SUPER cool.     Ty found him asleep beside him one day this week and had no idea how long Troy had slept in his bed with him.   Troy has turned into this lovely little morning person now that he is in control of his schedule.  Awesome.

 

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?

Jim, being predominately left brained, would make a point to say that few things are ever “always true? or ?never true?.?? When it comes to Ty, I have written a summary of Ty?s world but there are many variations involved.?? After reading this, you might be surprised when you are talking with Ty and you find that things don?t seem as ?extreme? as what you expected after reading this.??? That is because I can?t possibly summarize my adorable boy in something I write and publish on my blog.? He is more than all of this.? Far more.? If you were to pay close attention, I do believe that you will see the truth in much of what I have said BUT you will also delight in the treasure of Ty ? who he is and what he has to offer.

 

 

When Jim reminded me that I am a ?Ty expert? and already knew what I needed to know, that really hit home and gave me a sense of empowerment.? Now that I have written all this, I realize that I have effectively written the ?How To? book that I have been looking for.

 

Thank you for taking the time read my many posts on Ty?s world.?? Your investment of your time and heart mean so much.?? God has given us the most precious circle of friends and family and I have such faith, that God put us all together for a purpose ? to be sheltering trees in one another?s lives.

 

In closing, I want to share with you the verse that Ty?s neonatologist put on his isolette when he was in the NICU:

 

I Corinthians 1:27-29

But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.? God chose the lowly things of this world and the despised things ? and the things that are not ? to nullify the things that are, so that no one may boast before him.

 

So say we all.

Ty’s Future World

June 14, 2011

People often ask me what I predict Ty?s future outcomes to be.? I can?t answer that.? No one can.? I can only see today.? I have a lot of hope for a great future though because I see how hard Ty works to learn.

 

My mom commented recently that Ty has some social awareness because he starts so many sentences with ?Excuse me?.? Interesting observation but not (in my opinion) accurate.?? Ty is not socially aware of proper etiquette.? I have told Ty a zillion times not to interrupt and that it is polite to say ?Excuse me? when he is trying to gain my attention while I am engaged.

 

That is effectively meaningless to Ty.? These types of social rules are never going to be an intrinsic normal to him.? All children have to be taught manners ? true.? But eventually they adapt to their social culture and it becomes something they also value.? They understand the need for it and therefore can intrinsically figure out when and why it is appropriate.? This sequence does not happen this way for people with social spectrum issues.? Instead, they must learn what is appropriate and memorize the social rules in such a way that their INTELLECT will guide them as to when it is appropriate to apply a particular social manner because their intuition and social ?reading? of a situation are not going to do that for them.

 

As a result, Ty starts a lot of sentences with ?Excuse me Mommy?.? He has not learned yet to apply the rule appropriately (as in only when you are interrupting a conversation).

 

I can hear people thinking ?Ya but all children do that.? You teach them something and they use it inappropriately in the beginning?.? True.? It doesn?t take them long though to ?get it? and then mature into appropriate use naturally.? This will not ever be natural for a person with a social spectrum issue and that is the difference.

 

In an earlier post I referenced Jim?s socially clueless behavior at times.??? I?ll use a different example of how a person learns to adapt to a social expectation even if they never ?understand it?.? You will like this story.

 

When Jim and I were first married I had my feelings hurt because Jim was not good at acknowledging special days or getting me cards.? I made a point to tell him this.? I specifically addressed the cards issue.? The day after our discussion, (a non holiday) Jim came home proud as a peacock.? He had a stack of cards in his hands.? Smiling from ear to ear, he laid them on the kitchen counter top and began signing them one by one.? He then wrote ?For Easter? on the outside and then ?For Christmas? and ?For Birthday??etc.

 

I WAS APPALLED.? Convinced he was mocking me, I stared at him in horror that he would patronize me at that level.

 

Jim was not joking.? He was not trying to make fun.? I had explained that it hurt me when he didn?t get me cards. ?He then knew exactly what to do to fix it.? He went out and bought the whole stack for the whole year thinking I would be absolutely delighted because he went above and beyond and was going to make sure he had the whole year covered.

 

And yes ? I admit ? I struggled to wrap my mind around how he POSSIBLY could have thought he was going to meet my emotional need that way.? In time, I came to understand that Jim doesn?t read me well.? That is something that is difficult for him.? If I give him a direct ?I need blah blah blah? he will go out of his way to do that but I must put words to it.

 

Was Jim filling my need in the way that I intended?? Not exactly but when I could understand his efforts, it counted.?? All these years later I am still learning to cross over to Jim?s side of the bank and tell him exactly what I want.? Ty is helping me to get much better at this.

 

The morale of that story is, Ty might not practice the execution of social practices in the authentic type of way that a socially aware person would but he can learn the steps and execute the steps out of consideration for another person.? I fully expect Ty to show up with a big stack of cards and a big smile on his face someday.? I will treasure every one of them because I will know what it took for him to do it.? In fact, it will count a thousand times over because his only motivation will be making the choice to fill a need for me that he has no understanding about but loves me enough to do it anyhow for MY sake.

 

In considering this, I believe that Ty can be taught to love other people even better than the average person.? If Ty learns to do it, he will have learned to conscientiously act upon the needs of another person without needing it to be reciprocated.? That truly is authentic.

Welcome to Holland

June 13, 2011

Speaking of foreign lands….

I probably could not count the number of times people have sent me this essay.? In case you have never read it…

 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland. (emphasis mine – DB)

 

And by the way, from what I understand, the author of this essay wrote this after the birth of her son who was diagnosed with Down’s Syndrome.