Welcome to My World

Regardless of where we are, life comes at us. If we want to cherish the moments, they tend to pass us by faster than we can savor them. If we would rather skip a day, it seems to linger endlessly. But life is what it is, and we have to make the most of what we have and focus on the good aspects, large or small, to truly relish our life.

Monday, December 19, 2011

Give it All Away

I have been thinking a lot about flowers recently. The rose is my favorite, and I have a couple climbing rose bushes beside my brick mailbox.  Just today I checked the mail and there were still 5 roses on the bush that have just bloomed and 3 more that are still buds.  My favorite one is the one called Joseph's coat.  It's a combination of two roses that have been graphed together to make a different flower with delightfully pale yellow and peach petals that have a deliciously fragrant aroma.  It is the middle of December in Georgia, and my roses are still blooming.  I guess nobody told them their season to flower officially ended around October.

The last few weeks have been interesting.  I have been put on hold in reference to caring for others, for the most part, until my neck heals.  Anita has been wonderful with both the children and the house, going far above and beyond the call of duty in helping me, as I am not even allowed to pick up a jug of milk, let alone take a laundry basket of clothes upstairs or vacuum the carpets.  Some days are more painful than others, and the kids aren't always cooperative.

Nathaniel takes turns being the perfect little helper and shutting down completely.  Nyssa wavers between being the sweet daughter and the night cyclone that doesn't sleep but rather gets into everything while I am out cold.  Benjamin for the first time is refusing to help clean and Gabriela doesn't understand why I don't pick her up in my lap to rock her for her nap.  I must admit that my attitude isn't always the best right now either.

It's the season of Christmas!  I admit to feeling a little sorry for myself.  I love participating in the Christmas musical and I had to bow out this year.  Because I have been grounded from driving until my neck gets more mobile, I have yet to get Richard's Christmas present.  And because my body refuses to be flexible, I still have to wrap the kids' gifts.  Decorating will go no further than the wreath on the front door as I can't climb in the attic to get the decorations let alone actually move enough to put the appearance of holiday cheer.    For the first time in years, we may not have a tree as it usually takes both of us to set it up.  All of these things put together at times work together to put me in a depressed state.

But here's the twist:  learning to be thankful for my weariness and my worries.  I mean, what in all of these things are life ending prospects?  So my autistic children don't behave right now all the time.  Neither do my other children; if I were to be perfectly honest, no child in the history in the world behaved 100% of the time.  Okay, so there was that one.  I am not allowed to drive for a few weeks, but at least I have a car when I am cleared!  I am having difficulty wrapping presents for the children, but at least we could afford to buy them.  I may not be able to decorate my house, but Christmas has never been about the tree and the garland and the stockings anyway.  The true meaning lies in the heart, in the sacrificial giving because of a love that was given to me.

I am being forced to sit back and do next to nothing; in fact I have not been able to sit long enough to type for over a week.  The house is even messier than usual and there is almost nothing I can do about it.  All I can do is sit back and tell the others what needs to be done.  I am being forced into a state of letting everything go.  If something gets done, then I shout, "YES!" If it stays a mess for a few days, then so be it. 

It isn't my typical Christmas, I realize.  But I am really starting to realize that it is truly better to give than to receive, in a different way than ever before.  It is so much easier to let go of the weariness and of the worries than to hold on to it.  It becomes a burdensome load on my shoulders.  Giving it all away lightens the burden and takes away the additional pain of worrying about how it will all work out.  I am more weary than ever before, but instead of trying to hold on to it and cradle it, I am learning to give it away.  I am learning how to do a simple task that I often try to complicate.  I am learning how to rest.  When I grow weary, I just stop for a while and give it away.  What's most amazing is that after I have the opportunity to give away the weariness, I am able to give more of myself later because I am no longer bogged down.  And I feel freedom.

I have a confession to make.  Almost every time I sit down to write, it's after an especially frustrating day.  Some of those times I am still fuming at the fingertips when I begin typing at the computer.  Most of the time I have no idea what is going to come of the session until it unfolds before me.  Somewhere along the line, I begin to see not only the circumstances that have changed, but myself as well, if I permit it to happen.  I still have a long way to go, but as I allow it, the unfolding begins.

Thursday, December 8, 2011

I Want to be Just Like You

I love the movie Babe, and I'm not ashamed to admit it.  I watch it with my children at least once every couple of months.  If you have never seen it, it is worth watching at least once.  Spoiler alert: don't read the rest of this paragraph or the last sentence of the next to the last paragraph of this post if you don't want to know the ending.  The movie is about a piglet who is won by a farmer at a country fair.  He grows up on that farm with a set of sheepdogs and is taken in by their mother who he lovingly calls Mom.  Eventually, he grows up to be just like her.  It's amazing what the young can pick up when surrounded by a certain kind of stimulus in their environment.

We received some wonderful news this week.  We had been awaiting the results of Benjamin's test results from the Marcus Institute.  He had exhibited the same language and behavior as Nyssa and Nathaniel, along with some obsessive compulsive quirks of his own, so we had him go through the Autism Spectrum testing.  We had noticed significant strides since he had started Pre-Kindergarten and were very pleased with his progress.

During the testing I noticed similar behaviors in him that I saw in the others.  In fact, I already knew what to look for during the tests, especially during the interactive phases where they had me sit in the room with him. Of course, he didn't know about the window glass when I wasn't in the same room as he.  Then again, he's a smart little boy; he just may have.  At any rate, I observed as the examiner brought up subjects which were chances for him to interact in which he completely ignored her comments.  I observed the lack of interest in toys.  I observed the inappropriate playing with toys.  I observed the copycat manner in which he used her same example to play with the items given to him to make up a story.

Both the examiner and I had to control our faces when she subtly moved his centipede out of the line and he looked at her and put it back.  Again, we had to keep straight faces when she tilted his horse on its side and he looked and picked it up, setting it on the opposite end of the line.  Finally, we almost lost it at his reaction when she turned the jelly fish up on end.  He stopped playing, moved the jellyfish, and clearly put his elbow and forearm between the toys and her hand.  There was no way to interpret that except the non-verbal "You leave my toys alone."

With all this information, I left that day, three weeks ago, almost certain of the outcome we would receive this Monday.  Since I had hurt my back, my husband went with me to hear the expected news.  We sat down with the psychologist who told us that Benjamin was a delightful little boy and a lot of fun.  She said he had some real strengths and some weaknesses.  She said she'd get right to the point and then take us step by step through the process.

She said based on Benjamin's performance, he showed absolutely no signs of Autism Spectrum.  We were floored...pleasantly, I might add, but completely caught off guard.  The doctor said she could understand why we thought he may be on the spectrum, given both his behavior and his siblings' history, but Benjamin himself tested off the spectrum in every way. 

Benjamin had learned every bit of these behaviors from Nyssa and Nathaniel, who are ASD.  They are all he knew on a regular, daily basis.  He saw how they interacted and so he took that behavior and mimicked it.  The teachers at school have said that he has the typical meltdowns of a child his age, and a couple atypical troubles, but that when shown that the other children his age didn't act that way, he quickly coped and changed. 

Now, he definitely has a lot of trouble when it comes to disorder, uncleanliness, and coloring out of the lines, but they are a totally different category.  He likes it clean, in his order, without dirt or bugs; he likes the picture to look exactly the same as the example, same colors in the lines and all that jazz.  That is obsessive compulsive, and hopefully will be able to adjust and cope with these rigid aspects.  It is, however, not Autism Spectrum.  This means I have to change the back of my book, My Own Little Palace, but it is something I am very happy to do.  He would not let me get away with it anyway with that perfectionistic streak.

It is so amazing how the doctors can so brilliantly make these tests that can not only reveal the marked behaviors, which were evident in Benjamin even to the examiners, but also reveal whether they are natural or simply copied, where the child can step out of the behavior if pulled in a specific direction.  Because Benjamin is so close in age to the other two, he picked up their behaviors quickly and adjusted his own to fit theirs.  He learned their quirks as the "normal" thing to do.  He learned that, even though not socially correct, these characteristics were in a way, because his siblings have been the majority of his social network.  Now that he is in school, he is seeing that the majority of children do act differently.  He has actually mentioned it a few times recently.   He is also adjusting his own behavior to match those of his peers, copying what he sees is the acceptable behavior in non-ASD children.

Gabriela has shown all along a difference between herself and the others.  She is also 3 years younger than Benjamin.  She does not have their behavior demonstrated to her all day every day.  She shows by leaps and bounds the difference between a typical toddler and an ASD child.  She is more engaging, more interested in others, joins their world and brings them into her own.  She waits to see my response and reacts to my expressions.

Benjamin followed the example of his brother and sister, and may in some ways have missed out in some things.  But I think he also learned some valuable tools to use as he grows older in how to deal with ASD kids in ways that "normal" children without these special siblings may never have, as Gabriela will develop as well.  He learned how to adapt.  That is a great strength, especially with someone that's obsessive compulsive!  It is perhaps that ability to adapt to his siblings that just may help him cope with his own quirks and come to overcome their difficulties. 

He's very bright.  We learned through the testing all about his strengths, too.  This is valuable information to have for his teachers as well.  If he wants, he will be able to be a super engineer some day.  For now, though, he is content with his greatest desire in life.  When he grows up, he wants to be a fireman.  If he puts his mind to it, I have no doubt that he can do it.  After all, that pig made a great sheepdog by picking up the great example he had before him.

Of course, having a son who is excellent at mimicry, I'll need to be extra careful.  He's watching me.  He's watching his father.  He comments that he wants to be just like Daddy when he grows up and recently announced that he wants to marry me some day.  What kind of woman do I want him to marry?  I need to take a long, hard look at myself.  I need to make sure that what I exemplify is worthy of the kind of woman I want him to choose one day.  I am blessed, though.  Richard doesn't have to change a thing about his character.  If his little physical clone grows up to be his character clone, my little Benjamin will grow up to be just fine.  He already paces in the chess knight fashion just like his Daddy.

Monday, December 5, 2011

A Real Pain in the Neck

One thing I can say about life is that it is certainly not predictable.  It is constantly in motion, ever changing with subtle, smooth movements or lightning paced activity.  More often than not, one event makes the framework for the next.  If you don't pay attention to those moments, or if you respond incorrectly, you can find yourself having lost complete control.  Then, even when you do finally  can be quite difficult to live with for a time.  When you don't pay attention, it

One such event occurred to me on November 11 of this year.  It was a seemingly harmless common incident that turned my world upside down.  My to N & N's were finishing their gymnastics class.  Nathaniel had a rough time, but he was trying to get himself back under control.  The class ended with the children taking turns swinging on a rope into a 5-ft deep foam pit.

As I mentioned just moments ago, Nathaniel had a rough time.  He took his turn and let go of the rope.  He was supposed to make his way back to the edge of the pit to get ready to go home.  He decided he was having so much fun that he did not want to leave.  I had no choice but to go in after him. 

I jumped in close to where he was happily playing and finally got hold of his arms.  He was not very happy with those circumstances, so he decided to change them by fighting the pull of my arms.  When he did, the lower part of my body didn't move due to the foam.  My neck, however, went with him.  At that moment, I felt an uncomfortable tinge, but I ignored it for the moment, as the urgent business at hand required getting him out of the gymnasium.

Since it was a Friday, I waited until Monday to have anything checked out.  I figured I just popped my neck out of joint and a chiropractor's hand was all it would take.  Well, one day lead to another and another; I was busily preparing for a trip to Texas for Thanksgiving.  To make a long story short, I waited perhaps too long to get myself checked.

The chiropractor took one feel and said she was not going to do anything until we had an MRI of my neck and back, along with some x-rays.  A steroid shot and a Vicodin later so I could stand lying still enough for the lab work, I found myself inside the magnetic chamber, realizing that I probably should have gone in earlier.

Thankfully nothing was broken.  But even I could see where the x-ray showed a thoracic vertebra off kilter.  It was right in between my shoulder blades, where the knife pain was.  I can't translate MRI's, but according to the report, I had a bulge in between my C5 and C6, and between my C6 and C7...translated, that was two herniated disks in my neck.  My back and neck were in constant spasms, even causing my arms to be partially numb.  The other diagnosis was a sprained neck and possibly sprained back.  I'm out of commission for anywhere from 6 to 12 weeks if I behave like a good little girl.

I was told to not lift anything more than 4 pounds, and absolutely no picking up a child.  I initially nervously laughed it off, saying that I'd do the best I could but, well, you know how it is with kids.  Sometimes you just got to do what you've got to do.  I don't think my chiropractor has ever shot daggers at me before.  She told me under no uncertain terms that I WOULD comply, that I would NOT pick up my two year old, and that I WOULD behave or else.  She loves me, she really does care.

So, the next item on the agenda was whether I would be able to participate in the Christmas production the choir puts on every year.  It's so festive and I adore the songs.  I decided to try.  I hit all my notes, so I'd like to say that rehearsal went well.  That is, if you want to consider the fact that I was wearing a neck brace, it hurt like the dickens to sing the high notes, I rocked back and forth, and I was almost in tears by time it was over.  And I still had an hour left before I could take more pain medications.  It was evidently clear, but I tried to be stubborn.

Yes, I tried to be as stubborn as that pack mule I envision every time I hear how Mary and Joseph took that trip from Nazareth to Bethlehem, or the donkey who stopped in his tracks when the angel appeared before it while she carried Balaam.  I talked to my doctor once again and she gave me the look that said, "Why are you even asking me about this?"  So, with a heavy heart, because I love singing so much and didn't want to let the choir down, I told our wonderful director this morning that I was going to have to sit it out.  I hope to be able to sit and watch it from the crowd, but even that is up in the air at this time.

I thought I was going to cry when she told me she already knew and to not worry about the production.  I don't think I've ever been so happy to not have a solo in my life.  Sometimes life can be a pain in the neck, but it can be those very times in which life shows the sweet, tender side as well.  As for me, I am seeing the best in people while I sit by the sidelines.

Did I mention that I love my church?  The choir is full of amazing people!  I received nothing but encouragement this morning.  Anita is coming every weekday to help with Gabriela, the house, driving me to appointments, and cooking a meal or two ahead of time so all Richard or the kids have to do is pop it in the oven or microwave to reheat.  I've already received phone calls and sweet visits from friends.

The magical season for giving has revealed itself earlier this year to me, as all these loved ones are giving of their time and concern.  I will also reiterate here how my beloved Richard is taking Benjamin to school in the mornings and helping take charge of the children, giving up a lot of his cave time to help when he gets off work.  Even Benjamin's preschool is going out of its way to help.  The administration is allowing him to be picked up early until I'm allowed to drive again.

Yes, I am currently experiencing quite a pain in my neck...and my shoulders, and my back.  But I am also receiving so much love from all angles that the gratefulness all but overshadows the pain.  To be quite honest, the muscle relaxers and Vicodin help me to relax and make the pain distant for an hour or two, but it is the love I am given at this time that gives me visions of bliss and causes me to sleep in Heavenly peace.

Saturday, December 3, 2011

Ode to a Chiropractor

If anyone out there has ever had a back or neck injury and has gone to a good chiropractor, you will know what I mean when I say, "God bless them!"  As a kid, I was very wary of them.  I don't really know why except to say that I had visions of procedures at the thought of going to one.  I would imagine seeing myself lying down on the table and the chiropractor coming up to adjust my neck and pop, a rolling my head would go.  Now I know this sounds crazy, but please do remember I was a theater major in college, and I come by the imagination quite honestly.

So how did I come so far from being afraid of accidental decapitation to focusing an entire piece on chiropractor?  I shall tell you.  Of course, it will be in a story, though I cannot promise that it will be a short one.  I do get rather winded at times.  It's those dramatic genes, you see.  It all began with a fall in February.  The year was 2002.

I was a bride's maid in a friend's wedding and I was exiting the Gwinnett Place mall after trying on my dress.  It was raining quite profusely.  As I walked out into the parking lot, I slipped in a puddle.  It was a puddle of rainwater....mixed with some oil, the really pretty rainbow puddles that you see in parking lots on occasion.  The next thing I knew, I was going heel over head.  I landed head first, back second, and elbow third on the pavement.  Dazed, confused, and hurting, it took me a couple minutes to get up.  Someone came along and helped me up and brought me inside.  I think it was a security guard.

Fast forward the ER visit and the 10 weeks of physical therapy, losing a job because I was not getting any better, and moving back to Texas at the end of June.  It was in the lone star state that a dear friend introduced me to her chiropractor.  Now, mind you, I was wary, but I was also getting worse, not improving, so I was willing to try anything.  4 sessions with that doctor, some electric stimulation, some popping here and there, and ice and heat and I felt almost as good as new.

Again fast forward.  In December of 2004, I was pregnant with Nathaniel and had headaches that were so bad they incapacitated me.  I was dizzy, sick, couldn't care for my 6 month old, and was downright miserable.  My obstetrician suggested a chiropractor who knew how to treat pregnant women.  I was so pleased I looked forward to my weekly visits.  The headaches stopped, my ligaments which were weakened from the pregnancies kept getting put back into place and my lower back was feeling good.  I had some residual trouble from the previous fall, but we were working on getting my neck back to where it needed to be.  I had managed to get those vertebrae going the wrong direction.  I did well, saw them for a couple years, and then felt good.  Insurance companies changed and he was no longer in network.  I stopped going.

There's a lot of fast forwarding here...When I was pregnant with Gabriela, I started having some troubles again with my hips going out of joint and some headaches so I found another chiropractor.  I'm keeping her.  Gabriela is now 2 years old and I love getting my back straightened out.  Why live with joints always out of whack when I have a licensed, trained doctor who can put me back together again?


I recently injured my neck again (this will be told in a story in a day or so), and who else would I go to for care?  That's right.  I appreciate that she wanted to see MRI's and x-rays before touching me so we would know exactly what kind of injury we are dealing with here.  She is the absolute best and we're working to get my body back to where it needs to be.  So for this reason, I dedicate this Opus to Dr. Ann Kosa

Dr. Kosa, I know that at times I can be
A rather large pain in the neck
Well maybe not me, but my neck is you see
And my spine seems to be a real wreck


You do pop my back and shoulders and hips
With preciseness and gentleness too
The tens unit I love, I thank you for it
Helps my muscles relax and renew

It feels great to be able to walk normal again
I attend to the words you have said
Most important of all, why I still come in
Is 'cause you didn't pop off my head

Seriously though I'm thankful for you
You do absolute wonders for me
The kindness you show in all that you do
I respect and admire you greatly.


THE END

Three Steps Forward, Two Steps Back

Que sera' sera'.  Depending on the context with which the phrase is given, it can be either light-hearted and flippant or a sad sign of resignation.  But what does it mean?  Translated from Spanish, it means literally, "whatever will be will be."

I have four children.  Growing up I always thought I would have 5.  Maybe I will, maybe I won't, but this is the lot I have in life at present.  If I have more, I have more.  But right now, I focus on the little ones currently placed in my charge.  As a mother, I take every day as it comes and face the challenges therein head on, whether I feel I am prepared for them or not.  Sometimes I feel as if I have succeeded in overcoming the obstacles standing in the way of my children's growth and potential.  Far too often, I feel that I have lost the battle in my struggles to help them become all they can be.

Nathaniel has had many struggles this year.  He has mentioned countless times that he wishes he could start his life all over again.  He has said that he wished he were dead or wanted to go back to last night, rewind, and start the day again.  He is heartbroken when he cannot.  He wishes that he didn't have the obstacles that stand in his way.  He is realizing that he is different from most children and doesn't know how to take it.  So what does he do?

He runs.  If he gets frustrated with a situation, he runs.  He just may make a great track athlete some day because he is fast.  He runs to get away from the noise.  He runs to get away from the perceived ridicule from his classmates.  He runs to try to escape the pain he receives when he stubs his toe or smashes his finger.  He runs to get away from his own anger and hurt.  But the hardest part of all is that what he is running from most is the little boy that he is, trapped, as he sees it, because he knows he doesn't understand the world around him and realizes even more that the world around him does not understand him either.  He doesn't fit the mold.  So he wants to escape everyone and everything and just go into nature and hide in the wilderness or the forest.

He is too young for us to allow him to run there.  It's not safe.  We have to catch him and restrain him.   We have to try to help calm him when he is struggling against us, trying to get away, his little heart beating faster than the rhythm of a cat's purr, not nearly so calming, and rather alarming.  It breaks my heart when I see the anguish he goes through, the inability to get people to understand him, the inability to comprehend why he can't be normal.

But as I tell Nathaniel and Nyssa, they will never be normal.  They are not the typical children that are raised by the manuals.  They have Autism Spectrum.  They see the world differently.  But that's not a bad thing.  It is a tremendous, horrifyingly beautiful aspect of who they are.  Sometimes I think I would benefit by seeing the world through their eyes.  The perspective they have is so pure, so complex and yet so simple.  They have this ability to come at matters from an entirely different point of view.  They see things as black and white.  There is no grey.  It is or it is not, and it always will be.  If it changes then something is just out of sorts and needs to be fixed.   How much simpler would life be if, as an adult, I still saw some things as black and white as I did as a child?   

Treat one another respectfully.  Be polite.  Always say please and thank you.  Say what you mean and mean what you say.  Be honest.  If you don't understand, ask why without being ashamed that you don't know the answer.  Tell someone when they hurt your feelings.  Say "I'm sorry" when you realize you hurt theirs. 

That last component is vital to humanity as a whole.  Up until recently, Nathaniel did not realize how his actions affect others.  He didn't understand cause and effect in any way shape or form.  He did not connect that hitting his sister just may earn him a hit in return and would be devastatingly crushed when she would strike back.

Nathaniel is a very picky eater, not only about textures, but also about color and whether his food touches another type of food on his plate.  If I notice it quickly enough, I will move the food over so the components are completely separated one from another.  About a month ago, I failed to catch it.  He had a fit at the dinner table because broccoli was touching his rice and he did not like it.  He ran upstairs, fuming, ranting and raving, to his room.  I let him go so every one else could eat and planned to go check on him after the other children were finished.  I was amazed and shock at what happened less than five minutes later.

He came downstairs, completely calm and composed.  Nathaniel walked up to me and did something he had never done before.  He took my hand and said, "I'm sorry, Mommy.  I was wrong.  I should not have run away.  I should not have been mean to you."  I was completely flabbergasted and nearly flooded the kitchen floor with tears that threatened to flow.  He gave me a hug, which I delightfully returned and said, "I forgive you, honey."  That was the moment.

For the first time in his six years, he fully understood that his actions were his responsibility, and that they were wrongly expressed.  For the first time, he apologized for something he had done with absolutely no prompting from any other person.  He felt it in his heart and he got it, really, truly, got it.  He sat down at the kitchen table and began to eat with the rest of us.  He then looked at me and said, "I don't wish I had died anymore either, Mommy.  I'm ok." 

Several times since then he has realized the effects his actions have had on us and has given heartfelt apologies for them, not just repeating what we tell him to say, but coming to us of his own accord in repentance for his doings.  It's clicking, and he's going to be okay.  He's making the connections with this vital step in communication with the world around him, with relationships with those who love him dearly.  He has taken the step that we had prayed for, which is the basis for all interaction he has with others that will come and go throughout his life.  It has taken a long time to get there, but he is on the right track.


In spite of all my aspirations of growing up and becoming the perfect wife and mother who was the ultimate encourager, cheerleader, and overall image of Donna Reed to my husband and little prodigies, the time came when I would come face to face with reality.  Eventually realizing that television is expertly scripted by an assortment of writers who have days to come up with a problem, the characters' reactions and the inevitable solution helped free me from the illusion that everything turns out rosy at the end of the day.  Real life is raw, and we choose the script as we live, and we don't always have the luxury of debating how we will respond, because our true character will make itself known as we live and breathe.  But what further freed me was the discovery that I can wake up the next morning and feel as Nina Simone sang, "It's a new dawn, it's a new day, it's a new life for me and I'm feeling good." 

There may be a great amount of heartache in the day, there may be sorrow that lasts for some long, lonely nights that must be persevered.  But when you least expect it, something wonderful happens: joy!  Joy comes in the morning, and when the light shines brighter and brighter, breaking through the clouds to the noonday sun, it is overwhelming, unfathomable, joy unspeakable.