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.

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.

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.

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.

In the last post, I discussed ToM and NLD but in this post I want to explain it using an analogy.? Maybe this analogy would be good to share with children as well because I think ?story telling? helps those of us that can empathize, to relate better.

Pretend that you are shipwrecked and find yourself on an uncharted island.? The native population welcomes you but you recognize that you will be an alien in a strange land for quite some time because their culture and customs are completely bewildering to you.

At meal time, you find yourself very limited to what you can stomach because they like their food to wriggle and writhe in your mouth.? You equate this to living creatures and can?t do it.? Few foods are immobile so your menu is short.

The clothes they wear feel like burlap and it itches you to distraction.?? These things you can deal with though you don?t care for it.?? The bigger issues though are relational.?? When you hold out your hand to greet a new friend, you are glared at.? Hand shaking is offensive in this culture.?? When you play a team sport, you are ridiculed for ?winning? ? this culture prioritizes equality and sameness ? not success.?? They don?t like eye contact.? You must speak very loudly because being quiet is rude.? The list goes on.

In order to develop relationships, you must learn to do these things to live well in their culture.? The difficulty is, their perception of what is right and good and friendly and fair is completely different than yours.??? You will always want to shake a hand in greeting, look a person in the eye, win a game, and eat food that doesn?t move but this is not an option here that will gain you favor.? Instead you have to LEARN what they want and then do that.

It isn?t so easy to learn it either because you have to remember all their rules (rules that make no sense to you) and how they apply in each and every situation.

Does that analogy help a little bit?? Does it make sense now to you why I would say that Ty will never ?intrinsically? understand some things therefore, he will have to learn them?

Let me give you another example that may help you understand the difficulty involved in having to learn something that is intrinsic to most people.

In our culture, we shake hands upon meeting new people.? All new people?? No.? How do we know when to and when not to?? I don?t know how I know it ? do you?? I guess by intrinsically being able to gauge the situation and by watching and learning when it was (and was not) the appropriate time to do it.? To be truthful, I have never once given this any thought and I doubt most of you reading this have either.? We don?t know how we know how to apply some social rules appropriately but we do know.? We instinctively developed these skills and matured them without even realizing it.

If you have an impaired ability to mature in these skills though, you DO have to think about it.?? Here is what I think a person with a social spectrum issue may go through trying to live in an unfamiliar culture (so to speak):

• I have been told that greeting new people by shaking their hands is socially appropriate.
• I just met the bagger in Walmart ? do I shake his hand?? I don?t know him and he just told me his name.
• The neighbor next door?? Maybe yes?
• Job interview?
• The UPS guy who is new on the route when he drops off my package?
• The nurse in the Dr.s office?
• A co-worker from out out of town who has come in to help with a project?
• The paramedic when he arrives after I have broken my leg?
• The police officer who pulled me over to give me a ticket?
• The kid on the playground who is ?new? but is calling me names?

See the problem?? You and I could go down this list and say with some intuition, ?yes ? no ? yes ? no ? maybe?.??? Ty would struggle.? Not only does he have to learn that he should shake hands but then he has to learn how those rules apply in every situation because he is not going to know intrinsically.

Then one day someone says ?well actually ? you don?t just shake hands when you first meet someone, you also might shake hands in certain environments to say hello to someone you already know?.

All new level of complication added?

• Do I greet my co-worker at a formal business lunch with a handshake?
• I haven?t seen my mother in a week because she went on a trip with her brother?? Do I greet her with a handshake?
• Haven?t seen my cousin in awhile?
• I saw my Grammy yesterday but would she like a handshake today?? What is ?a while? exactly?
• The guy I work with who sits in the cube beside me everyday?

How does a person learn social appropriateness for such things if there isn?t a natural intuition guiding them??? They have to navigate their way through very complex rules to learn what their culture wants, went they want it, how they want, and how much of it they want.? Can you imagine how difficult that would be?

Now apply this to every social awareness type of issue you can think of and multiply those numbers out.??? WOWWWWW!!!!

Last week Darin (my brother) came to me and asked me when Ty would learn to not greet people (mainly his uncles) by hitting them.? I didn?t know how to answer because I can?t say ?when?.

My brothers taught my male children very young to aggressively greet one another.? This was done in full fun and assuming that they would socially mature.? An 18 mo old who slaps you on the leg to say ?hi? doesn?t pull much of a punch.? A 7 year old doing the same thing does.

Ty learned that as a social greeting for my brothers and he practices it with delight.? He has not yet figured out (a) when it is appropriate (b) with who (c) appropriate setting (d) how much (e) how hard.?? Those are a lot of things to learn and especially so when you THINK you ARE being loving, affectionate and appropriate.? We remind him continually but he forgets continually.

As with all spectrum issues, individuals who struggle with Theory of Mind impairments and Non Verbal Learning Disorders, have these struggles at different levels of severity.? I know plenty of people in my circle who have small degrees of difficulty in this area (my husband being one of them).???? Ty?s degree of difficulty is not so severe that leaning seems out of scope but it is severe enough that I suspect it to be a lifelong challenge learning all the rules that his brain will not give him hints to.

After reading all this, I suspect your mind has wandered to more than Ty.? I bet the light bulb is going off and you are identifying those within your own circles that have varying degrees of difficulty in this area.? I hope I have given you some tools to love them well.? Understanding empowers compassion don?t you think??? I sure hope so.? Go out and live loved ? and then share it.

**************************************

Just for giggles…here is an example of how social unawareness can be a benefit.? Tanner ( my most timid child) was asked to answer the door for me yesterday.? I knew it to be UPS, I was in the bathroom getting ready (for my 2nd date in a year with my husband which was very nice by the way) and couldn’t get to the door.?? Tanner was very upset by this request.? He knew the UPS man would ask him to sign for the package and that was borderline terrifying.? Yes he can sign his name.? No he was not willing to.? I got frustrated and demanded that he obey whether he wanted to or not (I needed that package).?? A moment later, both boys return and the following conversation ensues:

Ty:? Tanner made me open the door mom.

Mom:? Tanner!? I did not tell you to assign the task to your younger brother!? I told YOU to answer THAT DOOR!

Tanner:? (sheepish expression)? He was going to ask me to sign!

Mom:? So what Tanner!? Why couldn’t you just sign your name?? I don’t get what the big deal is?? Did he even ask?

Ty:? Ya!? He asked me to sign but I told him I couldn’t do it so he just gave the package to me.? Will you teach me to write my whole name for next time though?

Mom:? (Getting momentarily excited)?? You know how to write the letter T you just need to learn Y.? Do you want to work on that today again?

Ty:? Um…no.? I’ll just sign a T next time.

One thing that backfires in social situations is fear.? Sometimes I wonder if Tanner’s timid nature is as debilitating as the social issues that Ty’s struggles with.? Ty is not afraid so though he may approach a social situation differently, he forges ahead and as Sweetie would say “Fails forward”.?? Ty thinks talking to the UPS guy is wonderful.? I am thinking though that I should probably have a side convo with the guy and explain to him why my children are homeschooled and the oldest won’t sign his name and the youngest can’t.? That may look suspicious to an outsider.?

Even Tori bails Tanner out of uncomfortable social situations.? Our little mama seems to know where each of her brothers struggle and she rises to the occasion.? Recently Sweetie asked Tanner to go up to the counter in a local fast food joint and order some onion rings for her.? Insert deer in headlight look here.?? Sweetie and I both meet eyes exasperated knowing we have to decide whether or not we will chose this battle with him.? We decide to insist.? At long length, little sister gets tired of the negotiations under way and steps in.? “Tanner!? I will go with you!”.? And she takes his hand and off they go.? He returns with his classic sheepish Tanner smile.? Because he did it (with a little moral support from Sissy).

These are the moments when I see how BIG God is.? My three children were chosen for one another by the Master of all designers and it is a grand story to watch unfold.