Venn Diagram of an Autistic Life

I've been mulling this over for quite some time now. Philip has reached a point where he is too high-functioning to realize how low functioning he is and it is radically affecting every area of life. As a 10 year old with the IQ of a 6 year old and the social IQ of a 4 or 5 year old, he *thinks* he's rolling along just fine with his peer group. His autism makes him too self-absorbed to understand that others are not relating to him in the way he thinks they are. This is just fine for him I guess but not so good for the rest of us who need to walk alongside him and help him navigate life a bit more successfully. For many of us, it has become a great frustration.

The jagged edges around the circle that is Philip's World are an indication of the prickliness we experience when we attempt to help him break outside of his circle to meet his wants. He *wants* to have friends, freedoms, responsibilities but he just isn't able to because all of that prickly jagged edge keeps him from making good decisions. Within that jagged edge are characteristics such as "unteachable", "impulsive", "argumentative", "childish", "rigid thinking" and the very practical limitation of his poor speech and language skills.

My job, as I see it, is to provide him with as many bridges as possible to guide him over that prickly outside edge. Ben has been helping me process this and he's had some great insights. He realized, for example, that one bridge he uses for Philip is to present completely novel ideas to him. If Philip has already encountered an idea, he will immediately grow a rigid insistence to keeping it the same no matter what. But Ben has found that if he, say, presents to Philip the rules of a game he has never played before, then Philip will be able to follow the rules and enjoy the game without arguing with others. This bridge, unfortunately, goes both ways back into Philip's World, however, once the rules have been established in Philip's mind and the game is no longer novel.

On Monday I met with Philip's pediatrician to discuss the use of medications as a possible bridge. We will be playing around with Adderall for a while and see if the breaking down of his impulsivity will help to create a bridge toward better decision making which would result in greater freedoms and more responsibility. We are both skeptical, however, at the effectiveness of this since there are so many factors at play here. The autism and mental retardation cannot be cured with medication. I am fortunate (greatly blessed, actually) to have a pediatrician who is willing to walk alongside me on this with completely open lines of communication.

The Specific Carbohydrate Diet has provided a very important bridge for him. With this diet, we control many of his stereotypical/perseverative behaviors as well as his more OCD type behaviors. Helping him improve his speech and language skills is also in the works with the purchase of some software he's been using to help with his speech and I've kicked around the idea of voice lessons as well, using his natural talent for near-perfect pitch, and an outside teacher with whom he won't argue, to help him re-train his lips and tongue to make speech sounds more effectively.

I have a feeling identifying the things through which he filters his thoughts is also an important part of this puzzle. He basically has five different filters that we've identified: Screens (computer, tv, etc), Movies (he often communicates in dialogue from movies), NASCAR, Food and Self-Interest (Ben very astutely identified this filter for me). I think we may find many small footbridges within these filters. If we present information to him through these filters, he may be better able to make limited crossings into the worlds of Family and Others. For example, he is able to relate well with humor to the rest of the family when we are all engaged in recalling a movie we have seen together. An effective and enjoyable activity is for the children to recite lines from movies together with each person taking on a different character. I never made it all the way through the RDI manual before I lost it in the fire but I suspect that some variation on this idea of filters plays a part in the success of that program.

Parenting Philip has never been an easy task and this is just one more step in my on-going attempt to relate to him and guide him closer to leading a productive and fulfilling life.

Great and Holy Pascha

Christ is risen from the dead, trampling down death by death and upon those in the tombs bestowing life!

After Friday evening's service, we were so excited when Saturday came and preparations for the great Pascha feast could be made. The kids had been practically drooling every time meat was mentioned throughout the week. Ben was actually counting the hours until he could eat meat.

Saturday morning was filled with sports - the girls and Ben had opening day of baseball season and JT played a winning lacrosse game. After that, it was home for a day of preparing food, minds and bodies for the celebration of Pascha. Tad spent the day baking various breads and I put together the miscellaneous things the family wanted in our basket - finishing up the beef jerkey Adora started on Friday, baking the ham, bagging up the fried chicken Adora spent her morning making (LOTS of fried chicken - not so traditional Pascha fare in our basket!), cutting up some fruit, baking a cheesecake and trying to remember the random details like a stick of butter and a candle for the blessing of the baskets.

If I was proud of my hrudka, Tad had even more reason to be pleased with his breads. First he made three loaves of sandwich bread for the ham. He made a beautiful braided bread with the eggs cooked right into it out of the whey from the hrudka. It was sooo delicious with the taste of that sweet whey! The eggs should have been colored red but we didn't have time to mess with the natural dyes our family requires to get a deep red so he just put them in there un-dyed. He also made a paska with a cross and a braided decoration on top. Those turned out very pretty as well. I'm sorry I didn't get pictures of that. His kulich didn't quite get finished so we left that at home, which was ok because we still must have tried 5 others as all the baskets were opened and shared. All in all, we ended up with 3 baskets to fit all the meats, breads and cheese and misc stuff that everyone requested. One basket was just for Philip with his SCD foods and he had a great time digging in for all he could eat from it.

All that complete, we put the kids to bed after supper (slightly earlier than the usual bedtime) and I went off to take a nap. Ben was set to have his alarm go off at 10:45 and Tad was in it for the long haul. I had done all my pregnant body could handle and put myself to bed around 8:45. Tad woke me from a very sound sleep and announced that it was 11:45 - the service had started 15 minutes earlier and we still had to get everyone up and dressed! We managed to make it out of the house by 12:15 (am, that is) and arrived at church just in time to find everyone outside knocking on the door to get back into the church after the procession. We were terribly disappointed to have missed the entire first part of the service, including the glorious transition from the dark vigil to the Paschal celebration, but it is a nice thing about the Orthodox church that one can arrive 45 minutes late and still be there just in time for the last 3 hours of the service. (Although we did give Pani Chris and some of the others a bit of a scare as they once had a family not make it to the Pascha service due to a baby who arrived in the world 4 weeks early.)

All the children brought sleeping bags and pillows and were sprawled out in the back of the room where we worship. In spite of their comfy sleeping quarters, every one of them stayed awake the entire time except for our Philip who had been told he was going to sleep in church so sleep in church he did (sometimes that autistic mind comes in handy). Even Nathan and Nehemiah, probably the youngest two there, managed to stay awake until they were plopped into their own cribs at home.

What a joy-filled service! The choir was full of life and song and Fr. Greg didn't stop smiling the entire night. He censed us again and again with the incense shouting, "Christ is risen!" and we would reply, "Indeed He is risen!" To which he would echo the same in Ukrainian. We didn't quite get the Ukrainian response - maybe next year. His joy was infectious and kindled by the constant repetition of the Paschal hymn - Christ is risen from the dead, trampling down death by death and upon those in the tombs bestowing life! Never before have I experienced an Easter celebration so full of the promise of life. Reminded again and again of Christ's victory over hell and the sickness of sin, of his trampling down of death, we cannot help but be gloriously pulled from the tomb ourselves along with our ancestors Adam and Eve. It is the celebration of my favorite holy icon and Christ my super hero has arrived to save the day!

The traditional sermon of St. Chrysostom gave me great comfort at having arrived late with our family:

If any have laboured long in fasting,
Let him now receive his recompense. (that line's for you Ben - it's almost time for MEAT!)
If any have wrought from the first hour,
Let him today receive his just reward.
If any have come at the third hour,
Let him with thankfulness keep the feast.
If any have arrived at the sixth hour,
Let him have no misgivings;
Because he shall in nowise be deprived therefore.
If any have delayed until the ninth hour,
Let him draw near, fearing nothing.
And if any have tarried even until the eleventh hour,
Let him, also, be not alarmed at his tardiness.

By the time Fr. Greg read off the eleventh hour, I had the point - no use crying over our tardiness, Christ had still redeemed us and we are still invited to share in His victory!

After the blessing of the bread and the eggs, we retreated to the back of the room where the Pascha baskets were waiting for us. Fr. Greg read out the blessing including the blessing of the flesh-meat and the curdled milk (although he did substitute cheese for that). I got such a kick out of hearing the flesh-meat blessed. After so long a time without meat there was no doubt about what we were about to consume. If you can see the clock in the picture it does indeed read 3:00 am. At shortly after 3:00 we all sat down and broke our fast together and it was a wonderful family meal. It was about 5:00 am by the time we staggered home, got everybody shuffled back into bed and settled down for the "night". The Lord is merciful to provide such a rich feast for the body, the mind and the soul on this glorious celebration of His Resurrection!

Hrudka

How'd I do? It looks quite a bit like a brain in this picture but I did give it a little taste and it is yummy! I had a really hard time getting the exposure right - I guess it's too shiny, I don't know. I got the recipe from another Ortho Homeschooler and I impressed everyone at the service tonight with the fact that I made a rookie attempt. Wait until they see Tad's various breads!

12 eggs
1 quart milk
1 cup white sugar
1 tablespoon vanilla extract
1 pinch ground nutmeg

1. In an electric mixer, beat the eggs until mixed well.

2. Transfer the eggs to a double boiler and stir in milk, sugar, vanilla and
nutmeg. Cook over a medium heat for 30 minutes. Use a metal slotted spoon
and constantly stir the bottom of the pan to prevent scorching.

3. When the mixture looks like cooked scrambled eggs, pour it carefully into
a cheesecloth-lined colander. Carefully gather the ends of the cheesecloth
in your hands and pull them together until the cheese forms into a ball. Tie
the cheesecloth tightly at the top of the ball. Tie the cheesecloth ends
over a faucet or to the handle of a kitchen cabinet (place a bowl under to
catch the whey dripping down) and let hang for about 3 hours.

4. Untie the cleesecloth and wrap the cheesecloth ball in plastic wrap
before refrigerating. The cheese will keep for about a week. Slice and
serve.

Bible Believin'

I attended the service of Great and Holy Thursday Evening by myself. If ever there was a question of the Orthodox church being "bible believing" this service should settle it once and for all. I don't think I've ever been as immersed in scripture in one sitting as I was this evening during the chanting of the twelve Gospel readings of the Holy Passion of Jesus Christ. And if its fundamental bible truths you want, well then, look no further. It doesn't get more fundamental than the Gospel proclaimed loudly and long. The Orthodox Holy Week is proving to be one beautiful service after another, leading the believer right through the passion of Christ, the betrayal of Christ by Judas, the mourning and comforting of Mary - it's all packed in there complete with incense and processions and enough personal reflection to keep a mind mulling things over until the next Great Lent.

After the service, Fr. Greg was busied with taking down the altar and the iconostasis to stash it away in our closet and the rest of us were sitting at the table chatting. More specifically, I was getting some more last minute instructions on the packing of a Pascha basket. Suddenly, Fr. Greg stopped what he was doing, strode over to the table and stared off in my direction in what Tad terms as his Rasputin-esque look (not all that familiar with Russian history, I will just say that he can appear to have a startlingly piercing look in his eyes at times - this being one of those times). The he announced in a loud voice "Mary!" to which we all stopped and looked wonderingly at each other, not sure of what vice or ignorance I was about to be cured. He continued on with an explanation of the Levitical priesthood and the priest's duties during the high holy feast of Yom Kippur during which time the priest would enter the holy of holies to sprinkle the altar with the blood of atonement. Should he do anything wrong, he would be immediately struck dead and so a string was tied to him in order to pull him out from behind the curtain of the temple without anyone else needlessly entering the holy of holies. None of this was new information to me and I wondered what in the world made this all so important that he had to stop everything and tell me about it. Then he went on to say, "And so, in order for those outside the curtain to tell if the priest was still alive and performing his duties, bells would be sewn to his vestments...Thus, the bells on Vladyka's vestments."

It all suddenly came clear that he was simply responding to my earlier blog post about the bishop's visits and one of the many questions I had raised in that post. Fr. Greg then went on to explain further, "I spoke with the bishop and he said to me, 'You be sure to answer all her questions.'" So not only did the bishop read my blog before his visit, but apparently he's continuing to check up on me....No pressure here on this catechumen...so, bishop, rest assured that Fr. Greg is taking good care of us and our questions!

The Mysterion Of Unction

That was the name for this evening's service which was absolutely beautiful. For those in the charismatic circles, that's a healing service folks - although it didn't look anything like any healing service I'd ever attended before. The focus of the service was a table which replaced the icon in the aisle area for our little church space. On the table was a bowl of sand with a jar of oil in the middle which was surrounded by 7 plain beeswax candles. The service involved the chanting of psalms and a long prayer as each of the 7 candles was lit. The final part of the service was the actual administering of the sacrament of unction for all the faithful (Orthodox, that is). Two men held up the gospel book over the heads of the people as they came forward and had the oil painted onto their forehead and each hand with a little paintbrush the priest held.

It was a lot of prayers and thoughtful reflection on the state of our souls. The aim is repentance and the actual anointing with oil is a sign of the greatest healing the Great Physician can give us - that of the forgiveness of the sickness of sin. There were no guitars and nobody singing verse after verse of praise choruses. People were anointed but the prayer was short and simple, no catchers necessary - no praying in tongues, no laying on of hands - just plain, simple, humble prayer. I noticed that about the house blessing also when Fr. Greg came to our house. It was so straight forward. He walked through the house, he prayed, he splattered holy water on every possible surface (the dog and the bird weren't all that thrilled about being considered a possible surface) and then he expected that the house would be clean, free from bondage, protected by our Lord and His angels. It's the simple expectation that grabs me about the Orthodox. They pour out their souls into psalms, scriptures, chants that walk them through the gospel truths and then they simply expect that God will do what He says He's going to do. The reflection is on the worshiper. It is my job as I worship to inwardly draw myself closer to the Lord. It is God's job to show up. I don't have to invoke His presence, wave my arms until I "feel" Him draw near, pronounce visions of angels and saints (heck, look around you - everyone can see the angels and saints all over the place!) and then be disappointed when what *I* did wasn't enough. My only job is to turn a penitent heart to my Lord and expect Him to be the Living Word, a God of His Word.

After that service tonight I finally understood the times Christ said that it is more difficult to forgive sins than to heal. Not that I didn't understand the basic concept but I didn't get what one had to do with the other. I realized after this evening that sin *is* the sickness. Physical ailing is only a secondary condition to the separation of our souls from our Lord. All the gyrations we did in the charismatic church to "get" the Holy Spirit, to "call Him down" I think were part of the sickness, a spiritual pride that we actually had anything to do with the movement of God according to His word and His promises already made. It seems the Orthodox spend a lot of time looking inward and in the process find Christ already dwelling within them. It is a simple expectation, then, that Christ, once discovered in the beating of our own heart, would spill out His love to all those around us.

This had to be hardest thing we've done yet as catechumens. We showed up with the whole family and we all had broken hearts. If ever we needed unction - healing - it was tonight as we grieve the loss of Noah. But it was denied to us since we have not yet professed the Orthodox faith. I know that Fr. Greg was similarly grieved to be the hand that issued denial. But I'm hoping to use it as an opportunity to continue to place my mind within my heart and seek out Christ there. All it requires is simple expectation that God will be God and Redemption is coming...

A Visit from our Archpastor

We had a visit from our bishop today, which also fell on Palm Sunday. The Ukrainians apparently have a hard time getting a hold of palms, so they celebrate Willow Sunday by handing out pussy willow stems to all the kids to use as swords instead of the traditional palm fronds of my former Christian experience. It seems like every Sunday in the Orthodox church is another experience for celebrating something new in the faith.

I have to admit to being a bit leary of a bishop. In our recent experience the bishops we grew close to and followed after left the church and, in their leaving, the bishops we found ourselves bound to did little to gain our trust and affection. I know that bishops are human and fall prey to the same temptations of humanity as the rest of us and if that were the only scenario at play in our mistrust of bishops, I would chastise myself and remain true to my stand under their authority. However, the bishops in the CEC did more than the usual dabbling in various sin areas (although there was plenty of that as well). They redefined the church. That is church with a small "c" as the only place in which they hold much authority to define anything is within their own communion of the CEC. An Orthodox bishop, however, is a different matter entirely. Everything they do defines the Church and illustrates her long history. There are so many questions I have after today about all the ways in which he was doing this - questions about the bells and the little rugs that got shoved under his feet, the thing he carried in lieu of the crosier I'm accustomed to seeing in a bishop's hands, the crown and I'm sure even the buttons on his vestments reflect some truth about the Church. Come to think of it, I'm not even sure exactly what the bishop himself represents to the Orthodox. In the RC church as well as the CEC the bishop is the vicar of Christ. He has a special chair to sit in reserved only for his visits (haha - no such need for that in the Orthodox church!). He is the icon of Christ to the body of Christ. But I get the feeling an Orthodox bishop plays an entirely different role.

I'm afraid maybe I was even a bit rude to the bishop in my fear of growing close even though he seemed to be a man to whom one could grow quite close. He was kind, personable, humble, quiet. He was a man there for the people. He didn't just spend time with us. He listened. He spoke with the children and he cared about what they had to say. He cared about his priests. He didn't have an aura about him of over-blown authority and he didn't say anything to redefine the church or trap us into guilt. Maybe I'm even allowing myself to like him...

I do know I love this picture. I had no intention of standing behind the bishop, he showed up after we were all set up for the picture, completely rearranged the children and put himself, Fr. Dan and Fr. Greg right there in the middle of all the people. I look at this picture and I see what is becoming our new family. I see Peggy the choir director who is always a light in my week and an encouragement to my closet Tenor husband. I see Ginny who bakes beautiful cakes and has a personality just as sweet. I see 2 year old Teddy's Yaya who I felt comfortable enough to tease today about the day she made him stumble to the kitchen for a wet rag on his face for falling asleep during Divine Liturgy (now *that's* hard core!) and what I don't see is Mr. Wawa because he is leaning next to Clifford taking pictures. I see a group of people we are really growing to know and love and, in spite of my Episcopal Anxiety, I know that we are finding a Home.

Check out These Blogs

Well, how cool is this? I came across an Ortho homeschooling Mom who is also a foodie and an artist. Check out her blogs! She's now on my favorites list!

The Ikon As Scripture - Some Random Thoughts

I've been reading a wonderful, eye-opening book by Archbishop Lazar Puhalo called the Ikon As Scripture. Noting my recent interest in iconography, our priest passed it on to me calling it his "new favorite" book and I can see why. I'm a little more than half way through it but I've already come across some pretty profound insights and so I thought I'd share them as I go. The most striking was the labeling of one my fondest childhood Sunday School room images as the "Antichrist". Recognize this picture? I think it hung on the wall of every Sunday school room I ever entered and served as thought fodder for those moments when staring at the walls suddenly seemed much more interesting than singing one more round of Jesus Loves Me complete with hand gestures. Archbishop Lazar labels it in his book " 'New Age' Cult Style Christ. A type of Antichrist" He goes on to explain that in this picture, "which [is] very popular at this time, we see, not the God-man, Jesus Christ, but a California cult leader. He is sensuous, sexual, beguiling - a combination of Robert Redford and Charles Manson. [This] portrayal represents everything that Christ is not, and nothing that He is. They are simply pictures of an antichrist - a pretender in the place of Jesus Christ." Holy Cow, he's right!! There is not much of the divine to be discerned from this image. It is wholly a human portrayal with nothing of the Divine within it. Archbishop Lazar is quick to point out that if Christ is ever portrayed as anything less than Human AND Divine, then the portrayal is heretical. It tells us a lie about the identity of Jesus Christ. He must never be portrayed as Divine without His human qualities or as human without His Divinity....chew on that one a while....

On a completely different note, I was also fascinated by his explanation of reverse perspective in iconography. I suppose this is elementary to anyone vaguely familiar with icons but to the novice it was a wonderful new discovery. Basically speaking, rather than the picture on the icon beginning at the flat surface of the icon and ending somewhere in the distant background, the perspective is reversed so that the image begins in the back of the icon and actually ends somewhere outside the flat surface within the personal space of the viewer. For example, in this icon of the raising of Lazarus, I become a rather distant observer of Lazarus' exodus from his rotting tomb. However, in this one I am included as a guest at the far side of the table at the Passover meal with Christ.

Here I am placed alongside Judas as he gives Christ the kiss of betrayal (and thus the Orthodox fast on Wednesdays to show their connection to that kiss through the sickness of sin as exemplified by Judas right before and after the Passover meal) and, probably the one that moved me the most was realizing that in this icon, I become one of the mourners, the reverse perspective of the icon placing me practically on top of Christ's prone body and as one with the women who mourned his death. If you're having trouble figuring this out, try following the lines of the background structures. They will usually point you in the right direction.

Another point that struck me thus far (and JT as well when I explained it to him the other day) is the placement of the Theotokos and the Christ icons on either side of the Royal Door of the iconostasis. Again, this may be an elementary understanding of any Orthodox practitioner but it was all new to me. Archbishop Lazar pointed out that the Theotokos, marking the beginning of our understanding of Christ's humanity and salvation on the left and the Christ icon on the right marking His second coming and establishment of His kingdom leaves the Now in the center of the Royal Door. Each time the priest comes between the 2 icons he is marking our faith as it stands in the now. The Theotokos represents the Alpha and the Christ icon represents the Omega - the Beginning and the End - so that all that happens for the sake of the church militant gathered for the Liturgy is the working out of our salvation in the Now. Just think about that next time you're at Divine Liturgy (assuming my layman's explanation of it makes any sense whatsoever).

The last point I wanted to share was regarding this icon which should look familiar to anyone who has stepped foot in an Orthodox church as it is generally found on the East wall overlooking the altar. The Theotokos of the sign is an icon which was originally found painted on the walls of the catacombs (thus the curved East wall over the altar) and overlooking the tombs of the saints. The altar for the eucharistic celebration within the catacombs would be set up under the watchful eye of the Theotokos and on top of a burial site of a martyr or Christian deceased. Thus, in the "modern" churches, the Theotokos overlooks the altar on which is placed the antimension, a cloth with the relic of a martyr sewn into it. I was struck by the connection, once again, between the modern celebration of the Liturgy and its ancient roots in the early Christian practices.

I'm sure there will be more insights as I finish this book (hoping to get through it before Pascha). I'm finding it a great way to explore Orthodox traditions and learn more about the Divine Liturgy.

Conversations with the Heterodox...

I'm still uncomfortable with the term heterodox. I suppose there's still enough of the Evangelical Christian in me to recognize that it's just not *nice* to tell everybody else they are wrong...but, well...truth is, if they aren't Orthodox, they just aren't orthodox. In the CEC we loved to throw that word orthodox around and we've since realized that none of us really had any idea what it *meant*. I've had many, many conversations with my friends and acquaintances lately since we've become catechumens. They generally go something like this:

So you aren't in the CEC anymore?

No, we're currently catechumens in the Eastern Orthodox church.

Silence...

Long silence....

We're going to a Ukrainian Orthodox church.

Do they speak English?

Yes. All the services are in English, although the priest is Ukrainian.

Oh. Is that Catholic?

You mean Roman Catholic?

Um, I guess. Is that like the Catholic church?

Well, it's what the Roman Catholic church was before they were Roman Catholic.

Really? (I can see the thought processes churning trying to imagine church history actually happening before the 95 theses)

Are they charismatic?

Here it's my turn to pause and smile to myself. Well, yes. It is the most charismatic church I have ever attended but it is not charismatic in any way I've ever experienced before in my life.

Hm. How so? Do they speak in tongues?

No, not generally, but the Holy Spirit is more "present" in the Divine Liturgy than I have ever before experienced.

Oh. Well are they bible believing?

Here I think to myself they *wrote* the bible but I try to say something more accessible like: Absolutely. They have been worshiping with the scriptures since the very time the canon of scriptures was being decided upon by the earliest church councils.

Do you see where this is heading? It's like two English speaking individuals trying to talk to each other in Spanish and Russian. We have a common language but it's of virtually no use here. The mainline Protestant has no context for understanding Orthodoxy and the Orthodox have no context for understanding the Protestant world. As a convert I sometimes feel like an archaeologist explaining an ancient truth to the modern world. American culture is so steeped in Protestantism and has such a short history (spend a moment in any European country and you'll soon feel like a babe as an American) that a Christian faith rooted in the beginning in remote Mediterranean cultures, continuing practically uninterrupted for 2, 000 years and not centered in the need to Reform and Rebel has no place in our mindset. But I want people to understand. I want them to see the beauty and the richness and the complexity and the simplicity of it all. And so the conversations will continue but I still don't like the word heterodox....