The Pursuit of Perfection

We had Thanksgiving at our house this year, which consisted my parents, brother, sister in law and nephew. Six adults, two kids under the age of five. A simple and (mostly) quiet holiday.

The task fell on me to prepare The Turkey. Now, for those of you who have prepared The Turkey for Thanksgiving dinner, you know this is no small task. I mean, sure, it should be simple… put turkey in oven and roast it. Ta-Da! But no, there are a myriad of pitfalls in the preparation of a turkey. First, you must thaw it, a process that takes place over a 3 day period. There is no thing as a "last minute turkey thawing”. Then there are a dozen questions to answer.... to brine or not to brine? How long to cook for maximum juicy-ness and least likelihood of salmonella poisoning? Method of cooking... grill, roast, deep fat fry? Stuffing in or stuffing out? Seasonings? The turkey is the centerpiece. The "make it or break it" part of the meal.

Juicy Turkey = Thanksgiving Perfection.

Dry or Undercooked Turkey = Complete Failure.

Can you feel the drama?

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After dinner, my mom and I were chatting. She confessed that this time of year is not her favorite... that there is too much pressure to do everything "just so".... sorta sucks the joy out of the season. And that got me thinking about the pursuit of perfection.

I think (and mayhap you agree) that many people dread the holiday season because of this pursuit of perfection. The holidays are suppose to be happy! With singing and good food, smiles and perfect presents, joyful church activities and holiday decorations. And family and friends in perfect harmony. And if you don't have those Norman Rockwell moments, something is seriously wrong with you.

The "perfect holiday" is a like a condensed example of our pursuit of the perfect life.

And to not have a "perfect holiday" is some sort of failure....

Much like not having the 'perfect life'.

Jonathan is teaching me that there is no such thing as that 'perfect life'. Not that I didn't know this before Jonathan. But the pursuit of perfection ... the possibility of having the perfect house, job, and family is still there somewhere. The illusion still beckons from the shadows. But that definition of perfection has faded in importance for me. I am trying not to care about those things anymore.

My goals are smaller now, but so much more important. My desires are simpler, and yet so much more complicated. I feel like a square peg trying to fit in a round hole, not quite knowing my place in the world where the pursuit of "perfection" seems so important. I don't fit... we don't fit... and I am not sure what that means. Or how to be apart and yet a part.

But how about that Turkey?

Thawed.

Brined.

Seasoned.

Roasted with onions in an oven bag

at 325 F for 3 1/2 hours.

Perfect.

Puzzler

The J-Man put together a fifty piece puzzle today.

Fifty pieces.

He turns 3 in two months.

Fifty pieces!?!?

Is that normal? To be honest, ever since we started down this strange road, I have no idea what is normal anymore. To me, it just seems like 3 year old child shouldn't be able to do a 50 piece puzzle. But he does. He sits and works on it with way more patience than I would have now!

I am reading a book by Temple Grandin called Thinking in Pictures. For those of you unfamiliar with Dr. Grandin, she is an amazing woman and probably the most accomplished and well-known person with autism in the world. She has her doctorate in Animal Science and has written several books on both autism and animal behavior (no, not in the same book!). She didn't speak until she was 3 1/2 years old, and yet through her own determination and that of her family has reached levels of functioning far surpassing what anyone would have dreamed of in her generation.

In her book.... of which I must admit I am only 30 pages into... she is talking about how she (and presumably many other people with autism) are highly visual learners. In essence, she thinks in pictures, not words. So, that internal dialog that goes on in your head, or my head.... that is not how she thinks. She sees things in her head, three dimensionally, and creates associations based of memories of pictures.

One of the things she mentions is that many people with autism have this level of visual-spacial ability. Often... and I know you saw this coming... they are highly artistic or interested in design, and guess what.... they tend to be good at puzzles.

Now, while I could take this as a sign that the J-Man truly has autism, I am not really ready to go there yet. His social nature is starting to peek out, and I think we might start to see it blossom in the months to come. But, I am willing to say that undoubtedly he is a visual learner. To my core I know it. As I watch him solve the problems of a puzzle, I marvel at how focused and persistent he can be.... so very different than when the task involves language or auditory input.

The puzzle for me, now, is to find a way to harness this ability.

Quiet

Sometimes he is so quiet.
Frequently he is so quiet.

Word attempts are sporadic.
I can never predict when
he might make a sound or word.

He doesn't jabber or babble.
Not to himself, and not to us.
At least, not often.

He is quiet.

Some days I think he wants to communicate.
To talk.

Other days I think he is happy being quiet.

Wordless.

Less Traveled Roads

I shall be telling this with a sigh

Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference

--Robert Frost

There is this famous essay by Emily Perl Kingsley called Welcome to Holland. In this essay, she compares the difference between parenting a 'typical' child and a 'special needs' child to planning a trip to Italy, but ending up in Holland. While it is an interesting analogy, it sounds too easy. No offense, but Holland and Italy both sound pretty swell to me.

For me, I tend to think of it a little differently. I look at parenting like taking a walk in the woods. Now, most parents hike the well worn trail. It is wide and well traveled, with many other parents hiking right along side you. You see similar overlooks and panoramas, beautiful vistas and mountain creeks. There are definitely hills to climb, bugs to avoid, and the occasional rain storm. And sometimes you are the unfortunate one to step in the doggie-doo or trip on a big rock. But you have the benefit of others who travel with you on this same path, and mostly share the same experience.

For the parent of a special needs child, parenting is different. There is only a very thin trail, or maybe no path at all. Grass and tall weeds cover the forest floor, and there are unexpected mud pits that suck your shoes in. There is wildlife galore; some of it beautiful and some of it scary and dangerous. Gnatty, swarmy bugs bite. You aren't very sure where you are going or what direction to take, and the few guidebooks or fellow travelers you meet all have a different opinion or direction in mind. Mostly you hike alone, but occasionally meet others who hike these woods too. They know your hike because they are doing it as well. They can share tips and tricks to making it though the woods. But always you must hike on your own, because no one's journey is the same. Eventually you learn to navigate this woods. Slowly but surely you learn to avoid the mud pits, to defend against the scary critters, and to cut though the tall grasses in order to make the journey go more smoothly. And you hope that you are going in the right direction and that you aren't going to run into a bear or a mountain lion. You hope for the beautiful vistas, but you are never quite sure where you might end up.

Last week I attended a class on the Individuals with Disabilities Education Act (IDEA). According to Wikipedia, IDEA is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. Essentially, IDEA is the rules of the game that States have live by when providing special education services. This course was put on by a parent advocacy group (PACER), and was organized in such a way as to explain to parents the essential "what you need to know" rules. It covered topics such as the evaluation process, getting services, evaluating those services, and how to troubleshoot the issues and conflicts that could come up.

I wanted to take the class because as we approach the J-man aging out of the Birth to Three programs and entering the next phase, we will be starting to revise both the types of services he gets and creating an Individualized Education Plan (IEP) for him. I figured it might be pretty important for me to not only know the rules of the game, but also how to navigate the system. Avoid the mud pits, tall grass, and toothy critters as much as possible.

What struck me was how lost and frustrated so many of the other parents were. One mom, upon learning that she should have been receiving quarterly reports from her son's teachers and that he was grossly overdue for a re-evaluation (by 1 year, no less), burst into tears. Angry pissed-off tears! Another mom's voice cracked and her eyes welled up with tears when she explained that her son would never progress beyond a 4 year old level, and she wondered how she could ever make a meaningful IEPs for him. And yet another mom explained her frustration in finding an appropriate school district for her child in a recent move (been there, done THAT).

We have been so fortunate. Jonathan has a brilliant team and we have had very few struggles thus far. While I worry on a daily basis about where we are going and what we are doing right or wrong, Jonathan could care less. He is happy. And I think... no, I know... that the reason we have had it nice so far is that I am always willing to ask the questions. To be his advocate. And I have enough knowledge and skill that I can do it right. It doesn't mean I am not filled with doubt everyday, but I know we can make it.

My heart breaks for other parents on this journey who are struggling. There is no real guidebook for these woods, and feeling lost, scared, and confused can become a regular event. When people try to live from a place of stress and fear, things always go terribly wrong. And yet, this is where a lot of these families are ....trying to negotiate the forest without a map, a clear trail, and a solid endpoint.

A River in Egypt?

This has been a really weird week. A highly emotional week.

It is hard to get a pulse on what I mean. I am not sure how to articulate it. A bit of a roller coaster ride of emotions, both bad and good. But what I can say is that something seems to be changing around here, and whatever it is... it feels Big.

On the downside, we had a re-evaluation with Dr M at Children's Hospital. This evaluation consisted of a lot of questions regarding the J-man's development, where he is at, what he is and is not doing... and some basic observations of him playing in the room. Dr M completed both the Vineland and the CARS (standardized assessments) and from both these assessments and his 'clinical impression' he has diagnosed Jonathan with "mild autism and significant apraxia".

Of course, the "A" word makes me absolutely sick to my stomach. It is such a loaded word, filled with a lot of scary, negative unknowns and terrifing possiblities. While intellectually I know autism has a very broad spectrum and that many, many people have been diagnosed with the big "A" and either 'come out of it' or been so high functioning that (with intervention) were able to lead great lives... but as a parent, it is still a terrifing word to hear. And it isn't like I didn't know this word might be coming down the pike... I think we have been running from this word since day one.

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And what does our running from this word MEAN? Is it merely Denial... not wanting to accept what may very well be reality? Or is it something more? Why is it that a large part of my heart and mind that really feels.... believes.... that this is NOT autism? That this is something different, less easy to define, more specific to Jonathan. More based in language and motor planning, not socialization, not sensory. But on the other hand... is that just wishful thinking? Am I turning away from something true because I cannot look it in the eye? He has many of the symptoms... many, many 'red flags'. Is fighting that diagnosis about HIM or ME? If it is me... then I need to get over it. BUT... if it is HIM... then accepting the diagnosis is like giving up on his truth.

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To add to it all.... Jonathan has had an amazing week. NEVER has he been more verbal... both with signs and vocalizations. I cannot list the number of spontaneous new vocalizations he has had.... word approximations for things like bike, water, cookie, chip, passy, etc etc. He is imitating up a storm... he even copied me making a gobble-gobble turkey sound WITH ARM MOVEMENTS! Sounds that a truck makes... vrrrooom... beep beep noises. We have NEVER heard this from him. He also started preschool this week and did wonderfully. He even sat for circle time and clapped his hands! He has been so engaged, so involved, so here. These might seem like simple, silly milestones to you, but they are miracles for us. Nevertheless, he is still so far away from his peers.

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So how do I accept the big "A" with a week like this? Or rather, DO I accept it? Is my instinct to reject this diagnosis just denial or is it something more?

Right now, I am going with something MORE.

Of course, that might just be my denial talking.

As the Green Snot Flows...

What, Me Worry??

Jonathan is starting a preschool daycare this week.

Not the original fabulous place we had hoped for; alas, that place required that we also provide a PCA or Respite Care worker, and we could not afford that. So, we decided to look around some more and found our new preschool daycare: Jack and Jill Child Development Center. What won us over here? They incorporate Sign Language in ALL of their classes. That is a definite plus. Also, because it is in our school district, our Early Intervention teacher can work with him there. A BIG plus!

So why am I worried?

Probably because I am an overprotective, hyper-controlling, crazy mom?

We visited today for the first of two 'transition days'. The first day (today) we visit the room and let him play with the kids. Tomorrow (day two) I drop him off for an hour and see how it goes. On Thursday he has his first official day. I think my heart might stop.

Today went well. He had fun, and even sat down for circle time (albeit not in a circle... more in the middle of the circle). However, two key things made me a little nervous:

1) Snot. LOTS of snot. Clear snot, green snot, wet sloppy SNOT. Now, intellectually, I KNOW that he will get sick from all this exposure to other kids. This is just inevitable. And no doubt it will do wonders for his immune system. J-man has always been lucky to be very healthy. But soooo much snot..... what are we asking for?!?!?!

2) The Toys. And no, this isn't a tangent on the whole snot-germ relationship. The fact is, we are starting Jonathan out in the intermediate toddler room. We are doing this because the teacher-child ratio is lower, and they don't have expectations that he has a CLUE to what he is doing. They are there to teach circle time, basic routines, etc etc. And many of their kids are also new language learners. So we are hoping this room holds the best possible situation for his early socialization and language.

BUT... and I rarely get to say this.... he is WAY more advanced than their toys. He plays with legos and duplos, not big blocks. He does 24 piece interlocking puzzles, not wooden five piece non-interlocking puzzles. He plays with interlocking train sets, putting together the rails and train together. He plays on big kid slides and climbers, and will want to go on those instead of the 'baby area'.

So, I am extremely hopeful that he adjusts wonderfully, learns routines like a champ, and can 'graduate' to the preschool room before too long.

Where he belongs.

The Oral Issue

Don't go there.

Seriously.

J-man has always had 'oral sensory seeking' issues. He has chewed on everything since he could reach toys. It was especially pronounced when he was younger, where he had to mouth every toy he interacted with before he could play with it. As he has gotten older, this 'sensory seeking' behavior has decreased significantly... to the point that I thought we might be over it.

But over the last few weeks it has come back with a vengeance. He is chewing on his hand, his blanket (gross!), his shirt (double gross!!), a variety of toys, and pretty much anything he can get his hands on. Our OTs have tried to shape this behavior to "chewy tubes" and other acceptable things to chew on, but the J-man is the definition of uninterested. The only thing that can interrupt this 'oral behavior' is the pacifier.

The dreaded passy.
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Up until now, I never minded letting him have his passy. The way I saw it, it was a more 'normal' object to be sucking on than any of the other possible objects he might try to put in his mouth (like dirt, rocks, crayons, little people, cars, car keys, etc etc). A pacifier is 'normal'. However, the passy is starting to present some problems.

Firstly, he is getting a little OLD for a passy. I mean, he is a big boy, and I am sure he might look older than he is. So, while I could explain why a 2 1/2 year old boy has a pacifier, it isn't an easy sell. We are starting to get the sideways glances and disapproving looks... which does defeat the whole 'look normal' reasoning for using the passy in the first place.

Secondly, it is really hard to encourage vocalizations in a child who has a plug in his mouth. It is pretty easy for him to avoid making ANY noise whatsoever with the passy.

Of course, it is pretty easy for him to avoid vocalizing with his whole hand in his mouth too.

I am at a loss for what to do about this issue...except wait it out. And hope that he doesn't go to high school with a passy in his mouth.

Don't laugh, it could happen...

Another Review of Sorts: This Lovely Life by Vicki Forman

"Grief sucks, don't it?"

This is the reaction I got from a friend to a recent GEMM entry. And she nailed it on the head. As a mom of some special kids of her own, she gets it way better than I do. It was a revelation to me when she said it.... AH YES this is Grief! DUH!! Why didn't I see it before?? This angry, sad, frustrated, lonely, searching, seeking, grasping, fighting, treading water, pushing against gravity feeling... this is Grief.

And so, in honor of grief, I wanted to spend a little time "reviewing" a wonderful book about confronting parenting grief at its very core. Allow me to state that I am not a book reviewer. I just have an opinion, actually lots of them, and I thought I would share this one (I will do my best to refrain from sharing specifics from the book... everyone hates a spoiler!).

The best part of Vicki Forman's memoir is its honest brutality. The experience of parenting a micropremie is... unfortunately... not a singular experience. And Ms Forman's book could have focused on her heroics... the sacrifices, the successes, the 'triumph of the will' stuff. But instead, she paints a brutally honest portrait of herself, her experience, her son, and the medical establishment as a whole. She doesn't pull any punches, but... as a part of that "medical establishment" I don't feel personally hit. Many, many, many of the ethical and moral issues she presents in this memoir are not new concepts for me... I grapple with these issues every time a baby like this is born...

... how much is too much? when do you stop? what are the consequences of stopping, or not stopping care? what are we doing to families, and these children? why is that we (the medical community) can impose care on these patients, but when it comes time to remove care we require that parents be the ones to decide (nice position to put them in, ehe???)

The list goes on and on.

She is angry. Angry that she is put in this position, angry at the doctors, nurses, with choices that she can and cannot make. Angry at the situation, at the course her life has taken. And with a loss of perceived control that she feels she had (we all have this idea of perceived control... it really bites when you realize there is no such thing). With that anger comes overwhelming sadness, soul-numbing guilt, frustration, denial, vacillations between hope and fear, and emotional highs and lows that wear down any soul.

Grief.

She builds up and tears down her own arguments, her straw men.... and I found myself simultaneously agreeing and disagreeing with her. She presents her experience as a special needs parent... warts and all... and does not allow the reader (or me) to raise her up on high. There are failures, and successes, and everything in between. She is a real person with real feelings, real reactions... and they are not always nice and not always friendly and not always 'good'. But they are REAL.

And that might be what I loved MOST about this book. I don't need any saintly martyrs to tell me how to be a special needs parent. I don't need anyone saying "count your blessings" and "he has a special purpose in God's plan'". Nice thought, but thoroughly unhelpful. And frankly, I really don't think that... if God exists ... he is a micro manager. I love my son more than anything... probably more than myself, to be honest.... but I hate his disability. I hate the being scared all the time: of today or uncertainty of tomorrow. I hate the fact that I... as his mommy.. may never get to experience "normal" parenting (if that even exists... apparently it does at ECFE). My worries will always be different, and our fights for the J-man will always be MORE.

And that straight up pisses me off.... and that's okay. It is okay to be this human that I am.

This Lovely Life is truly lovely. Not in a traditional way, or easy way, or a safe way. But in a very, very human way.

Pia

As GEMM lurks...

If you understand why this photo

scares me, then you "get it".

The Green-Eyed Monster Momma is always lurking in the shadows. Sometimes her voice is a mere whisper in the void. An edge of sadness, loneliness or guilt that taints me. On good days, in good times, when Jonathan is doing well and we are seeing progress, she is faint and weakened. But she is always there, ready to rear her head and pull me down into the depths.

This weekend, she really got her hooks into me.

J-man and I went up to my parent's cabin this weekend. It is lovely... cool and green and relaxing. Jonathan loves to run in the yard, around the cabin and in the woods. But he most especially loves the water... to go on the dock and on the pontoon boat, look into the water and feel the waves. He is no happier when we are at the beach; at the water's edge, splashing and playing with the plastic boats. It is a great way to spend a summer weekend.

The cabin is located near some family friends' cabins, which makes for a lot of get-togethers and BBQs. The families work on projects together, go out boating together. I wouldn't be surprised if my parents retire near these friends and grow old together. These are lifelong friends of my parents. I grew up with their kids and they all have children of their own. Three generations of friends that are practically family.

Generally they are aware of Jonathan's issues. Of course, they do not know the depth and breadth of his delays, but I have explained briefly what is going on with him. Basically, I get pretty much the same response I get from everyone who isn't around Jonathan that much.... apparently, I am over-reacting and he will grow out of it. After this weekend they may refine their opinion... but then again, denial is a river that runs very deep.

Last night we were invited to a BBQ at their place. Jonathan was being a pill. His ability to tolerate the word "no" is very small and limited, and his temper tantrums are a work of art. I also think he was overtired and overstimulated by all the people and activity. He wanted to go to the water, to the boats, and get away from everyone. So, he and I sat on the pontoon boat at the end of the dock and watched the shore from afar. Adults chatted, children ran and played, a bonfire burned bright. And I sat alone on the boat with my son and felt so isolated and alone.

As it got darker and closer to dinner, I decided to bring Jonathan up to the house and endure the tantrum. Jonathan has a bit of the drama-king in him. He can throw himself down on the floor with the best of them. I have found that the best response in no response. Sit him down and let him rage... ignore and it will abate over time. Alas, the old ladies in the room (of which there were four) felt a need to try and 'fix' the situation. Advice whirled past me. Firmly, I said no... let him be... and thankfully my mom backed me up! So there I sat exhausted, my non-verbal tantruming two and a half year old son on the floor next to me.

I am used to being around other children of the same age as Jonathan who are developing typically. It is to be expected, and although it often brings GEMM out of the shadows, it doesn't generally fire her up. Rather, it comes into focus how behind Jonathan is, and a certain amount of despair fills my heart. But I have gotten better at pushing that aside and going on with the hope that someday those differences won't be as stark.

This evening was no different. Two other toddlers roamed around the cabin, one six months younger than Jonathan and one six months older. Both perfectly verbal and playing appropriately. They offered him toys and snacks (at their grandmas' urging), all of which we rejected with a whine and a flop by Jonathan.

One of these grandmas... a family friend of old who is not really known for her sensitivity and tack... was able to rouse GEMM to a full fury. As Jonathan lay on the floor, unengaged and acting so terribly 'autistic-like', this grandma called to her granddaughter and said "Hey Susie*, tell Pia 'I love you'."

And she piped up in this sweet little voice, "I luv you".

This 'old friend' laughed and said "Isn't that the sweetest thing you have every heard?".

And I think every organ in my body stopped.

It wasn't that Susie said it. She is very verbal. It is that her grandma... this 'friend'... prompted her to do it. To me. When my own son might not ever be able to say it, who was currently laying at my feet and moaning. It felt like a slap. It felt a deliberate 'na-na-ne-na-na'. Even GEMM was stunned. My escape couldn't be fast enough. I regrouped enough to make our excuses and bale. And as soon as I hit our car GEMM came out, crashing through my body and soul. There are no words to explain.

Later my mother said that she was sorry... that this 'friend' is flighty and non-sensibly and doesn't think. All true. But cruelty is still cruelty, even if unintentional. I have a 1000 things I wish I would have said... have done... to respond. I wish I had let GEMM out to do some damage... to inflict a little of the pain I felt. I didn't and I won't. Instead it will nest in me... and I fear what might grow.

Pia

*Susie is the name I have chosen for all cute kids who are supposedly better than the J-Man. If your name is actually Susie, please do not be offended.

Giving him clarity

An intriguing thought was presented to me the other day, and I have found myself thinking about it all weekend.

I have always had issues with being excluded from the J-man's therapy. Philosophically, I have felt that it was important for me to learn what to do with him. Also, I have just had a gut reaction to the idea... I just have never thought it will go well. However, our newest speech therapy location does have one-way mirror-windows so that I can sit and observe. Our speech therapist there tried to 'encourage' me to step out and observe, instead of sitting in the room with Jonathan during therapy. I didn't like the idea and neither did Jonathan... he basically melted down every time we tried. So, we have backed off for the summer...

This week I spoke with the Apraxia expert (JJ) who evaluated Jonathan a few months ago. I contacted her because I had recently watched a video from the Childhood Apraxia association. One of the experts interviewed on this video stated that if your child is not making "progress" in speech therapy within a 'short' period of time, you need to seek out other therapy or switch up the techniques or strategies used. My question to JJ was how do I know if he is making progress? What defines progress? Obviously if he is talking up a storm... well, there you go! But if not? Are 5 signs in a year and a half progress? Is that enough?

Anyway, we spoke at length about Jonathan. Where he is, what we are doing, where do we go from here....? I won't bore you with the details. What stuck with me from the conversation was her take on this 'separation during therapy' issue. When I explained the problem, this is what she said:

"(paraphrase)... Well, of course he needs you there! For him, you are his interpreter in a confusing world where he doesn't know how to express his needs or concerns. You provide information and understanding, and he trusts that you ... trusts YOU....will help him. No one else will be able to do what you can for him, and no one can be as effective as you for making the changes in communication he needs. He knows this, and so do you. That is what your gut is saying..."

I like her. We might have to switch therapists again... dang it.

Pia

Viva La Different

Dan called me at work tonight with a cute story about J-man. Cute and kinda sad.

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We are still in the process of meeting our neighbors. Tonight my hubby took J-man outside in the front yard and our neighbors across the street were out with their two-year-old boy. Up until this point we have only done the ‘wave and smile’ with these folks.

The little boy came up and said ‘Hi’ to J-man… how very appropriate. And J-man… being J-man… basically ignored the little boy’s existence and ran around. Dan took J-man to the little boy and tried to get him to say hi. J-man finally noticed the boy and…instead of saying ‘hi’ of course… leaned into the boy and gave him a J-man Kiss. (The J-man Kiss is a pursed-lip-lean-into-you kiss. No slobber involved.)

How cute is THAT?!

Apparently, the mom did not think it was that cute. Dan said she seemed a little freaked out. She hustled her little boy away with a‘nice to meet you’.

Hmmm… I guess we won’t be invited for a playdate?