Monday, December 28, 2009

GEMM, Kicking @ss and Taking Names


When GEMM rears her head, it is rarely a welcome thing.

However, sometimes her fire is just what is needed.

As I suspected months ago, the attendance policy at Family Speech became a problem. After 6 months of not missing ONE Speech or OT session, Jonathan got sick last week. He oozed green stuff out of his eyes and nose. He ran a fever of 102. He ended up on antibiotics for the second time in his life. He missed one session. ONE!

I called the day before and told them he was sick with fever and oozy green stuff. The receptionist (whom I admit annoys the crap out of me) immediately said, "So when would you like to reschedule to avoid the cancellation fee?". I proceeded to inform her... yet again... that we felt that the policy was unreasonable. She was unmoved. I informed her that we already attend twice a week and the other two days he is in daycare all day. I said the only time he could possibly come was after 4pm on those days.

"Couldn't he miss daycare one of those days?"

"Errr.....no"

"Well, I guess we just have to put you on the waiting list for a cancellation."

Well, swell. Just what I want, to sit on some waiting list to make up a session with a therapist Jonathan doesn't know for a session we really don't need to make up.

Emails flew. Voice mails were left. And management would not budge on the policy.

Well, that is not entirely true. The manager stated that they could make "an exception" to the policy if no time could be found to make the session up. And that is when it hit me... basically, this whole policy is about control. Now, for them, they want to control their money stream. They want to be the one who call the shots. They want the power to decide what is.. and is not... a 'good excuse'. And they want us to bend over and bow to their will.

So we quit.

What they failed to realize is that they really don't have any more control then we give them. They can create all the policies they like, but WE control the purse. I am so angry that there hasn't been a general uprising by the other parents who attend their office. Most of them probably assume they have no control, no choices... just what the management wants. Talk about taking advantage of vulnerable families.

With GEMM on my side, I am absolutely determined to not allow people more power over our family then absolutely necessary. I encourage all to do the same.

Sunday, December 27, 2009

On Being Brave

Recently I was Therapy Dog shopping online.

Actually, not shopping. It isn’t like you can get on Ebay and get a therapy dog. I was actually just looking at therapy dog programs specifically for children with developmental delays. I had gone to a parent support group last week and several parents had therapy dogs for their children. One parent talked about how the dog helped with calming during tantrums, the other with communication issues and safety. It was an interesting discussion because I had been thinking for several weeks that a dog might be good for Jonathan. I hadn’t thought as far as a specially trained therapy dog, but nonetheless something appeals to me about the idea of a dog companion for our family.

So, as I am cruising the Internet, I find this video:




I was speechless and in tears. So much about this boy… his face, his smiles, history…reminds me of Jonathan. Not everything, mind you. I would guess that this boy’s need for a therapy dog is greater than the J-man's. Jonathan does not have the same issues. But this video and its song spoke to me.
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"... the way it always was... just isn't good enough... you make me want to be Brave..." (what a wonderful song)

Being brave means doing what you need to do to help your child. Being brave means living with grief. Being brave means having every kind of hope. Being brave means being more than you thought you could be. Being brave also means loving and laughing in spite of... or maybe even because of... the frustrations you experience. I am meeting such wonderful, brave people on this journey of ours.

So, will we get a Therapy Dog? What do YOU think we should do? Most of the Therapy Dogs are quite expensive (think thousands of dollars)... and our needs right now are small. There is a local place that does some companion dogs that I am looking into. But allow me to encourage YOU to look into these organizations and consider donating a little tax-deductible coin toward the efforts. When you read some of these stories .... oiy, my heart!!

For Whit: http://www.4pawsforwhit.com/

http://www.4pawsforability.org/dream.html

http://www.autismservicedogsofamerica.com/

http://www.puppyloveinc.org/ (Our local place)

Tuesday, December 22, 2009

A Blast from Christmas Past

This is from Jonathan's First Christmas.
He was about 9 1/2 months old.
He is still as delightful.


Tuesday, December 15, 2009

Driving Mr. Jonathan




There are lots of things to update: recent Word Watch activity, our IEP meeting last week, holiday plans, etc. However, I think I will just tell a little story.

Despite his relatively calm demeanor, the J-Man is a man of action. Clearly, he was meant for parents who are willing to run with the bulls and leap tall buildings with a single bound. Alas, he got us. Much like Tiger Woods, Jonathan likes variety. He likes new and exciting diversions. He is not a “stay at home and veg” kind of kid.

Now, any parent with a language-delayed child learns early on that in order to encourage communication you have to make the kid “work” for the good stuff. They want the cool new toy? Make them say “toy” (or some approximation thereof). A cookie? A drink? A Nintendo Wii? Make’m work for it! Motivation is the key… hookm’ with their heart’s desire and they will try to do the hard stuff for the highly sought reward.

And then … there is Jonathan.

Not much motivates Jonathan enough to really, really, REALLY work for it. He has to want it pretty darn bad. Unless whatever you are asking him for is easy to do, he is likely to move on then keep trying. The list is very short of things he will work for.

So whenever we get one, we pounce, regardless of the consequences.

And this is how we have ended up driving Mr. Jonathan around every night for his “Evening Constitutional”.

Here is how it starts:

Jonathan grabs my hand and pulls me to the stairs. He sits down (2nd stair only, thank you very much) and pulls me down to the floor to sit.

On his own he says, “Coooa” (Coat)

“You want your coat?” I ask.

“Coooooa.” He looks at me expectantly.

“Why?” I ask.

“Gooooo…. By-eeee!” He states impatiently. Emphatically.

And from this point I can elicit any number of other vocalizations. Where are your shoes? Shoo (with the sign) Where is your hat? Haaa (with the sign). Where are your socks? (just the sign for socks… oh well).

But... lest we wish to witness a meltdown… we must go out. Somewhere, anywhere. Preferably the gym playland, but Target will work. And since we are trying to encourage communication and vocalizations, we are giving in to his evening demands.

I don’t mind.

I mean, let’s face it. This is practically a conversation for the J-Man!

Monday, December 7, 2009

When ECFE Breaks My Heart, Part 2


(for Part 1, click here)

So, there I am, choked up, teary eyed and embarrassed beyond belief. I am not a huge fan of crying in public. In response to a question regarding how I knew something was "off" in Jonathan's development so early, I was explaining that... while everyone seemed to think I was nuts... my previous background in autism gave me some insight into the 'red flags', so I pursued assessment earlier than most. And then, the inevitable comment:

Lead Teacher (paraphrasing): OH, God meant for you to be Jonathan's mother! What a blessing for him!

Sigh.

I have heard comments like this before:


God picks only special parents to take care of these little angels...

I could never do what you do.... you have been chosen to a higher purpose.

God only gives people what they can handle, and you are meant to be his mommy.

These special little angels are sent here to teach us something.


Ok, let me explain something to any dear readers out there who do not have special needs or disabled children.

Don't say crap like this. EVER AGAIN.

Now, I think people are trying to say is that they think you are a good parent and they think that the child is lucky to have your support and love. Cool.

But this is what I hear:

Apparently, you believe that God has rewarded me for my education, training, and desire to help others by giving me a child with a disability so I can experience the sadness and anguish that causes. If I had just quit school and worked at Wall Mart I would have a "normal kid". And, of course, because YOU don't have all the fine virtues I have, you are safe from ever being 'blessed' to have such a special child. Also, only people who are good and educated and "capable" have disabled children, because God would never give an idiot a child like with a disability. It would seem that if you ever did have a child with a disability, you would give it up for adoption or leave it in the snow, since you could "never do what I do". And thank goodness God gave him to me to raise, because apparently all disabled kids are here to teach you how to be a better person.

Let me make this very clear. I am no different than you. Any parent .... ANY PARENT... could be in a similar situation at some point. You do what you must. You rise, or not, to the occasion. I do not believe God gives special needs kids like some kind of "gift". Frankly, that would just make me pissed off at God. Sometimes, shit just happens. God, or Allah or the Universe might be able to lend me a little strength, but I don't think our lives are like some massive chess game that is under some kind of master control. There are plenty of kids, special or otherwise, with crappy parents who shouldn't have children. That is just how the dice rolls.

I have no superpowers. There is no difference between you and me. You cannot construct some magical fate to separate my reality from yours. I am not chosen. I have and will continue to make mistakes. I may not be able to handle this. Do not assume I.... or any other parent of a special needs kid.... is ready, willing and able to handle this.

Our kids provide an opportunity. We can learn from them. But don't give them the JOB of teaching us. They have enough on their plate. Each of us has the opportunity to learn compassion, understanding, strength, courage, and justice from all the events of our lives. And maybe someone will learn some of those lessons by knowing Jonathan. But that is not his job. His job is to be Jonathan. To make the most of his life. And my job is to help him because I am his mommy and I take my job seriously.

Jonathan might have gotten lucky to have me as his mom. And I am lucky to be his mom. But we are as real as you. We could be you. And when you accept THAT, you will truly learn how to have compassion and understanding for us.

When ECFE Breaks My Heart, Part 1


Last week, I cried at ECFE.

In my defense, I had a long night at work the night before, was having some issues with back spasms the last few weeks and had taken a muscle relaxant (Evil Flexeril) the night before and thus had a very bad Flexeril hangover. (BTW, I hate Flexeril) In addition, the week had been long and somewhat stressful. We received Jonathan's re-evaluation from the school district, and while I am not going to go into the details today, needless to say there were many 'numbers' that made me sad. Not that he is doing poorly... actually, he is doing great! But to see how delayed he is in black and white...hard to feel good about it.

Ok, so I have had my issues with ECFE. But generally, it has been going well. However, when I walked into the parent classroom and saw the words "Language Development" written on the blackboard, I knew it was going be a quiet day for me. Since I was already feeling like ka-ka, "being quiet" wasn't going to be far from the mark anyway.

My resolve: Just keep my mouth shut. Do my best to fade into the woodwork. Find my happy place.

Yeah, right.

So, the question posed: what are your kids doing, saying, etc?

And let the brag-fest begin!

It seems petty to be jealous and upset about these things. But GEMM doesn't care. Her giant fiery head rears itself at time like these, and the throat closes, stomach acid churns, and I become an expert on the lines of my hands. Goooo to your happpyyy place..... happppy plaacee...

And then, the teacher turned to me and another 'special needs' parent and made a point of asking us what our little ones were doing. It is well known we are the 'special needs' parents, and J-man's issues are known. I was prepared. I had my script. I rattled off where we were, while aching inside because I knew... as it came out of my mouth... that it sounded bad. Real bad. But it is a script I am used to delivering and questions I had heard before. I could make it!

And then one mom asked me "And how are YOU doing with all this?"

Let the waterworks begin.

I just opened up my mouth and nothing came out. I truly didn't know what to say. No one asks me that. Not really. I just wasn't prepared. I honestly am not even sure what I said, I just teared up and mumbled something and who knows... I probably babbled. With my face in a tissue.

It just snuck up on me.

It is funny. Just when I feel like I have got it together, am working toward some level of acceptance... I find out it is just a lie I tell myself.


Saturday, November 28, 2009

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?
.
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.


Saturday, November 21, 2009

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.






Thursday, November 19, 2009

Kendra's Story

I am lucky to be a NICU nurse.

I am lucky to make a difference.

Not every story ends up like this...

In fact, many don't.

But I get a chance to be a part of the possible.

This is why I do what I do.


Happy Birthday Kendra!

Sunday, November 15, 2009

Goals

How many two year olds do you know who have goals?

Next month, we have Jonathan's IEP meeting. An IEP (Individualized Education Plan) is essentially a road map or 'contract' for establishing educational goals and tracking those goals. The IEP not only establishes these goals (and some kind of metric to measure those goals) but also helps establish the ways in which these goals will be met. Generally speaking, the goals are built by information on the the educational assessments previously done, and on both parental and teacher feedback on where the child is and where they need to go. The IEP is like the Bible for special education students. It guides all.

Crafting a good, quality IEP is not an easy task. It requires an understanding of the child's strengths and challenges, how they learn best, how to capitalize on those strengths and minimize the impact of the challenges on overall performance, and how to address the areas of weakness in a way that is most effective.

Parents come to the table with the Child Knowledge. We know our kids. Alas, we don't always know the best way to address the issues and implement them in the classroom. We don't always know the words to describe the subtle problems and issues, and frankly... if we could fix our 'broken' children, we would.

In a perfect world, teachers and therapists have the education and skills. They are suppose to know what to do and how to do it. And we parents look to them to help craft the perfect IEP... the IEP that will provide everything the child needs to progress... no, EXCEL!!
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Do I set expectations too high, perchance???

So with Jonathan's IEP coming up, I have started thinking about what kind of goals we should be establishing for him this next year. I have been brain storming a list of "good goals" for his IEP.... and I found that this was not an easy task! It is so hard to articulate what his goals should be in a meaningful way. It is so much easier to just say what I want....

I want him to say "Hi mommy!" when I walk in the room.

I want him to share with me his interests and show me things he likes, not just get me to do things that he needs or wants.

I want him to play with me, not just by me.

I want him to have friends. Real friends that he likes to see and wants to play with.

I want him to try and tickle me. And chase me. And chase and tickle me.

I want him to be able to use his imagination and play creatively.

I want words.

Lots and lots of words.

Am I asking for too much?


Saturday, November 7, 2009

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.


Our Halloween Fireman


Sunday, November 1, 2009

Rockabye


We have a fairly standard bedtime ritual in our house, one that is no doubt very similar to most households. After bath and teethbrushing, we get J-man a drink of milk, read stories in the rocking chair, turn out the light and rock him a little bit and then lay him down in bed. One of these days.... no doubt soon.... we will do away with our rocking time. But, for now, it is my favorite time of day.

Tonight, after the lights went out and we snuggled together in the rocking chair for a bit, J-man started wiggling and turning (my signal that it is time to lay him down in bed). As I picked him up and started to his bed, he said... clear as day... "Bye-ie".

He told me BYE!

It both thrilled me and sent a pang into my heart. But thrilled me more.

Saturday, October 31, 2009

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.

Tuesday, October 20, 2009

A little spooky...

My analytical side does not believe in fate. It does not believe that God micromanages our lives.  It believes that we have free will, and that events that happen in our lives that seem like fate are really just freakish coincidence.   I am rational, logical, intellectual, and not persuaded by fantastical talk.

And then, there is my other side... my secret side.  This side believes in fate, in a guiding hand of God, in Santa Clause and in the idea that "there are no accidents".

This side looks back on my life and sees some crazy acts of fate.  The way my husband and I met (long story).  The fact that I have this wealth of previous experience and education in the area of early child development and autism, which in many ways primed me to be aware of Jonathan's issues early on instead of catching it later. 

And now, another example of the crazy hand of fate.

In April, 2008, Jonathan was just starting to be evaluated.  The school district hadn't yet started to test him, speech therapy had just started to get involved, and we were waiting on an appointment at Children's Hospital.  Anxiety was high.

One night I was watching the local evening news and saw a story celebrating a "Top Teacher".  Only half watching, I keyed in when the story explained that this teacher worked closely with young children who had autism.  Obviously, given my fears at the time, this caught my attention.  I distinctly remember thinking "If needed, I wonder how we would get Jonathan in her class in the future".

Time passed, and when we expressed concerns about our first teacher, the district very kindly assigned us a new teacher, Ms Kristin. And we have been massively impressed with her ever since... her knowledge, her sensitivity, her willingness to work with us and Jonathan, her observational ability.... I could go on and on.   We sorta felt that the district must have given us their best, given the fact we bitched.

And... strangely... she felt familiar.

Today, something sparked my memory about that news story.  A little Google search later and...



Ms. Kristin is the exact same teacher. THAT is a little spooky...

Of course, they were completely right, Ms. Kristin.  You are a Top Teacher!

Sunday, October 18, 2009

A Halloween Preview

I love fall. It is truly my favorite time of year. Alas, our early snowfall makes it seem like we are not likely to get a long, lovely turning of the leaves, picking of the pumpkins, and gentle cooling of the weather. Nonetheless, snow cannot take away one of my all-time favorite holidays: Halloween. Not a "Harvest Festival" either.

HALLOWEEN

Jonathan's first Halloween was only remarkable in how darn cute he was.


Last year, Jonathan begrudgingly let me put him in a costume, but truly hated every minute of it (if you can't tell).


This year, I was hoping he might have some inkling of a favorite character he might want to be. But alas, he is in the very infancy of his imagination, and does not express any favorites as of right now. Nevertheless, he has taken to wearing dress-up clothes at therapy and loves it. He enjoys putting them on and looking in the mirror. He puts on our shoes and tries to walk. So his 'pretending muscles' are starting to flex.

So I think, this Halloween, we are going to have some fun.

Currently, the costumes in the running are:

Sir Jonathan, Knight of the Dinner Table



OR


Jazzy J-Man, the Hip-Hop Fireman
(note the low-hanging pants)
Whatca think?

Monday, October 12, 2009

Support Team J-Man!!!


We are walking in the Childhood Apraxia of Speech Walk-a-Thon here in Minnesota. It may be cold, it may be snowy, but we will be there! With parkas on!

Childhood Apraxia of Speech is a motor planning problem where the areas of the brain that plan and coordinate speech production do not function properly. Essentially, the way I typically explain it is that it is like having a TV and a cable box, but no cord to connect the two. They both may work great, but all you will get is static. The areas of the brain in apraxia are not communicating in such a way as to allow for speech to occur. Because the motor planning is so difficult, other areas of learning can be compromised. Jonathan has Childhood Apraxia of Speech.

So, if you have a little extra coin, consider dropping it toward a great cause. Very little is known about the causes of Childhood Apraxia of Speech, and treatment is often a long road to go down. The CASANA foundation spearheads this effort, providing money for research and education.

So hey, donate to our team: TEAM J-MAN

Sunday, October 11, 2009

Just for Fun

Just a quickie fun post.

We had our first snowfall of the season. It was just a little dusting, gone before noon, but J-man insisted on going outside. Mind you, he has been in snow before, but I am not terribly sure he remembers it (he was still pretty little). So coat and hat on, I sent him out on the deck to check it out. He made it about 2 feet, past the grill, and promptly turned about and came inside. Apparently the cold isn't to his liking. I don't blame him.



I read a lot of blogs. Ok, maybe not A LOT, but a few. Most of them are written by parents of special needs kids. I find a lot of insight and inspiration from them. I wanted to share an entry made by one of these blogs (MOM- NOS). Whenever I read this entry it gives me hope not just for J-man, but for the world at large.

Check it out: The purplest.

Wednesday, October 7, 2009

1 in 100?

Recently I posted the following video clip on Facebook.


Watch CBS News Videos Online

A dear friend of mine, a grad school buddy, suggested that this study mentioned was seriously flawed (indeed that is true) and that the reason we see these increased rates is because of "a broader diagnostic criteria & greater public awareness". He is certainly not the only one to feel this way... that the rates of autism are some kind of statistical anomaly and not truly reflective of "pure autism". And indeed, while these reasons may be a factor in the rate change and prevalence of autism, I would suggest that those reasons are wholly unsatisfying to both why the rate changes are being seen and what these rate changes actually mean.

Of course, there are two possible lines of reasoning for the changes in the rates of autism.

Reason One: the reason no one wants to be true is that there is a real, honest-to-goodness reason why we are seeing more autism. The possibility that... for some unknown, scary reason... children are having some major neurological event either prenatally or in the very early developmental years that results in the unique autism symptomology. The theories range from the the plausible (prenatal exposure to some kind of teratogen, possible autoimmune issues coupled with environmental or viral insult, mitochondrial issues), to the unique (folic acid overload, Vitamin D deficiency) to the crazy-ass (just Google for the nutcases).

People with no children or typical children are scared to death of Reason One... because lets face it.... if it is Reason One, it could happen to your children. It is nicer to think that it is all genetic, and you are safe, and the rate increase is all about Reason Two.

Reason Two: The new rates of autism are a statistical anomaly, the result of over diagnosis or misdiagnosis, or both (whew, thank god.... it isn't real.... anyhoo.... ).

Ok, let's make the assumption that the true occurrence of autism in the world has stayed stable for the last 1000 years (in essence, there is no other reason for more autism). Given that assumption, what are the reasons for the current changes in overall rates in autism diagnosis? The possibilies, as far as I can tell, fall into the following categories:

1) Autism has been historically under-diagnosed. Basically, this assumption suggests that the current rates are more accurate, and that the previous rates (of 1 in 150 kids) suggest a lack of overall diagnostic ability by professionals in the field and that the broader inclusion of mild to moderate cases actually does reflect the same neurological conditions that lead to these specific disorders. Thus, this suggests 50 years ago we either had:

A) A lot of mild to moderate autistic children running around not getting services, and ending up labeled learning disabled, emotionally disturbed, or ultimately becoming diagnosed autistic due worsening symptoms, or

B) The mild to moderate ones "grew out of it" (which experts say can't happen, but whatever)

2.) Autism is being grossly over-diagnosed. Basically, this assumption suggests that there has been a complete frenzy to diagnose kids with autism, even though they might not meet strict criteria. Diagnosticians are misdiagnosing kids because they either are poorly trained in recognizing 'true autism' or are motivated to "get kids services" and the easiest way is to give an autism label. Therefore, the "new autism rates" are a reflection of a misapplication of the diagnostic criteria and a "problematic" and gross broadening of the criteria.

Of course, this assumption then suggests that the kids that are being NOW diagnosed as "mild to moderate autism" are, in fact, either:

A) Just fine... nothing is wrong with them that a swift kick in the ass won't cure;

B) Suffering from some other condition that causes significant language delays, social delays, and/or sensory issues (see my review of Autistic-Like Graham's Story) and apparently we have no words for and no historic precedent for, or;

C) There are always weird kids... that is all they are and were 50 years ago.

3.) Early identification is the reason we see a rise in Autism rates. So, in the last 10-15 years, a lot of education has gone toward getting doctors and educators 'up to speed' on autism spectrum disorders and working toward an early intervention model that allows these kiddos to get services early and improve outcomes. Ok so, more awareness, more reporting, increased rates. Makes sense.

Except, and here is the part I cannot get my head around... then what happened 50 years ago? So, 50 years ago, a kid was not identified as autistic early... in fact, nothing was noticed until school age. Well, there was 1 of 3 possible scenarios:

1) Kid was not truly autistic, or "grew out of " the symptoms by the time he/she reached school age.... enough so the teacher just thought the kid was weird, but not disabled. Probably didn't do awesome in school either. Experts say that can't happen... neurology is neurology... but whatever.

2) Kid was truly autistic and was stimming like a mad-fiend when he entered kindergarten. Which, if this ended up happening the rates would go UP, right.... just the reporting TIME would change, not occurrence.

3) Once the kid entered school and still had some difficulties and behaviors, he was dealt with as LD or emotionally disturbed.


So, does that mean that we are just re-labeling the problem with new words? If the rates have truly remained the same for the last ... oh, say....1000 years, what accounts for these new kids? Are they faking? Misdiagnosed? Brats? Had they been diagnosed as something else 50 years ago? Or not at all?

That is what makes me most curious. IF the rates are really statistical anomalies, then what would we have called these other "new" kids?

Or, is it possible that these mild to moderate cases are really something NEW? That 50 years ago we didn't see these kids because they weren't there... that something more has happened than just some re-labeling shuffle.

I really don't have any answers, but I can say this. In my humble experience, parents of a child who is given an autism diagnosis rarely sit back and just accept it. Generally, every parent I know looks for second, third, and fourth opinions. Indeed, I would guess that the increased awareness even fuels THAT... going out and finding better doctors, more complete evaluations. And even if there is funny business going on (and I am sure there is)... there is a reason for it. No one I know WANTS their child to have a disability. What they want... what they need... is help for their lost child.

So, what is My Big Opinion?

Call it Autism. Call it Apraxia. Call it Sensory Processing Disorder. Hell, call it the Snowman Syndrome for all I care. But recognize that all of this really does mean something for that 1 in 100 family, regardless of what you call it. Regardless of whether these children are being correctly diagnosed, mislabeled, or are the mark of some new, scary epidemic, we cannot and must not poo-poo these rates. These rates DO mean something. They mean that for one family in one hundred, life will never be the same and they will face struggles that other families will not. It means that their child... whatever the reason... is struggling with something that impacts their ability to learn, ability to form relationships, and ability to interact with their world. For all of our fine categories and fancy diagnosic labels, let's not forget to keep our eye what is really important.

Saturday, October 3, 2009

Alphabet Soup



Confession: I am an NPR junkie.

I am not sure when I went from cool hipster listening to the newest, coolest, obscure alt rock bands to cruising around in my Saturn VUE (the ultimate "non-SUV" soccer-mom-mobile) listening to such riveting programs such as The Splendid Table, Speaking of Faith, Car Talk, Marketplace Money, BBC Worldnews, This American Life, and so on. But so it is... I am a NPR junkie/intellectual elitist. What can I say?

Anyhoo. I was listening to NPR the other day and they were doing a program on OCD (obessive compulsive disorder). Now, I fell into this show at the tail end, and so I missed a large percentage of this discussion. And, to be honest, I was only half listening to the rest as I was driving J-man to yet another appointment. Nevertheless, my interest was peaked when a listener called in and asked the Expert Psychologist about her son who has autism. She stated that she had been trying for many years to get the doctors to add an OCD diagnosis as well, but was meeting resistance and wondered if the Expert Psychologist could comment. Now, of course, because I was only half listening I missed the first part of her answer... but my ears tuned into this part (which I am completely paraphrasing. Never have I wished for Radio DVR more. Expert Psychologist, please forgive my swiss-cheese memory, but I hope I recalled the spirit of your statement):

"... parents end up with a child who has what I like to call Alphabet Soup: PDD, OCD, ADHD, LD... all in the same child. But instead of looking at these as four different diagnoses or disorders, we should instead focus on this as one nervous system that functions in a particular way. And the individual problems in each diagnosis are actually a part of a whole neurological picture... where each set of behaviors no doubt influences other elements of functioning."

One brain. One nervous system. Not 4 or 5 different disorders. One brain that functions in a specific way, in a way that creates specific set of 'problems'. And those problems are not always neat and tidy in the way we "label" them. So, in order to attempt to capture the essence of this nervous system, doctors and educators rely on this Alphabet Soup approach. Of course, Alphabet Soup doesn't work. It doesn't work because these nervous systems are actually people, each which is unique and individual in its presentation of the particular challenges. But instead of crafting a carefully articulated story of specific challenges that one child may have, we get diagnostic codes and shortcuts and assumptions.

Which is why children have parents. And why we, as parents, must force ourselves to become absolute experts on our child. I cannot abdicate my role as the J-man's voice. We are coming up on his Big Evaluation and IEP planning for when he turns three, and I need to gear up and get ready.
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I have been told that the Big Evaluation is merely to qualify him for services. Essentially, the school district needs to know that he is delayed, and delayed enough to qualify for service. They will ask us questions about his development. They will test him on standardized tests measuring speech, language, sensory issues, and cognitive development (which I have a HUGE problem with, but that is for another post). They will add up numbers and 'quantify' the J-man. And they will, no doubt whatsoever, qualify him for the special education.
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Our school district has a designated evaluation team that does all the evals for special education. The reasoning behind having a designated team is a good one... you have experts in evaluation, who know how to administer the tests, and who do so in a somewhat systematic way. That way, all children who are tested are tested with essentially the same people, the same way. The hope is that by doing it this way, the results can be seen as reliable and valid. That his scores compare to other kids who have the same experience.
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Except...
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... what does that actually tell us? That... when dealing with complete strangers in an artificial setting, the J-man can or can't do X, Y, and Z? That... with no supports whatsoever, my language delayed, crappy auditory processing, socially delayed and possibly autistic TWO AND A HALF YEAR OLD can or can't do X, Y, and Z?
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I guess if the goal is to to see if he will qualify for service, this format is a goldmine. However, if you actually want to see what he CAN do, and do well, this is not the way to do it. How will they really be able to know who he is and what he really needs? Can this team of complete strangers assess the root of his processing difficulties, his motor planning issues, and social needs, and come up with a valuable plan that addresses those issues in a meaningful way? Shouldn't THAT be the point of the Big Evaluation?
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So, I shall be putting on my game face and going in...

Tuesday, September 29, 2009

Babysitting My Phone




So, twice a week Jonathan goes to preschool daycare.

And so now, twice a week, I sit by my phone from about 10am-11am waiting for our EI teacher to call me with a "how he did while she was there" update. Did he sit at circle time? Is he playing nice with the other kids? Is he devastated by his mother leaving him so she could selfishly sit at home and watch her phone? It is like I really cannot go on with my day until I get that call telling me all went well.

Helicopter mothers got nothing on me.

Watch me hover.

Sunday, September 27, 2009

My Baby Growing Up

Oh, my little baby is growing up and it is killing me!

With all of the changes over the last few weeks, I see him growing up right before my eyes. Now, don't get me wrong... he is behind the curve on a lot of things other kids his age do, and he has to be taught things other children just learn. But his rate of 'picking stuff up' has accerated. And therefore, I have been trying to raise the bar on him and introduce some stuff that he has yet to really learn.

Number 1: Drinking from an open cup.

Confession time. Jonathan has only ever really drank from a sippy cup on his own. I have held a open cup for him, but the few times he has been given a cup on his own he couldn't really figure it out. First, of course, he would just turn it over and spill it. So then, of course, the solution to not having a house covered in milk was to just put just a little bit into the cup. But then, you see, he has to grasp the cup and be able to lift it and tip it up (correctly positioned on his mouth) enough that he gets the milk, but not too much so he is covered in it. And he needs to have his mouth in the right position... not in the middle of the cup like he is trying to lap it up. And he needs to understand the whole point to this. So, motor planning and language skills....Hmmm, not exactly up his alley.

I have tried to figure out solutions to the open cup problem. I know it needs to be a smaller cup, with generally a smaller radius so his hands can go around it and he can have better control. Also, smaller cups allow me to put less liquid in it and have him still get the liquid quickly and with less effort (reward for his hard work). I tried dixie paper cups... but it didn't work. Dixie cups are far too crushable. I have 'cup shopped' for the last several months to no avail.

And finally, a solution presented itself today: IKEA

Specifically, the IKEA's Children's Toy department where I found a tiny little glass.



Perfect for his hands. A little Toddler shot glass (and no, we don't give him Diet Coke).


And, as you can see, success! Maybe now we can move on to Dixie cups.

Number 2: Toilet Training

The J-man is no where near ready to toilet train. And frankly, his mommy is a little at a loss for how to even start introducing the idea. He just recently discovered his "bits and pieces", if you will. Since starting at the preschool daycare, he is going to be exposed more and more to other children potty training, and it was time to buy a potty chair. Grandma and I went shopping and picked up his first potty. He loves it, thinks it is great. But as you can see, he isn't quite sure what it is for.

We are ready... sort of... when he is!



Wednesday, September 23, 2009

A Quick Recommendation: The Signing Time DVDs


I would love to take credit for the small vocabulary explosion that Jonathan has had over the past 3 months, but I can't. At least, not completely.

And I would love to say that all the therapy over the past year and a half was what did it.

I can't say that either.

However, I can say that since Jonathan started watching the Signing Time DVDs (we received 4 of them as a wonderful hand-me-down from some friends), he has learned nearly every sign on each of the DVDs. He doesn't used them ALL in context, but we have seen him sign back to the TV when he is watching them.

Today he signed "cheese" to ask for more cheese.

He TOTALLY learned that from the video.

So, Signing Time DVDs are teaching my son language. Go figure.

If anyone has an extra $750.00, we would love to get the whole collection. Heck, we'd go for even the full first series!!

Got hand-me-downs?? We'll take them! We aren't picky or proud!

Saturday, September 19, 2009

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.

Monday, September 14, 2009

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.


Sunday, September 13, 2009

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...

Monday, September 7, 2009

The Sound of Music

J-Man at 10 months: What a cutie!


Jonathan and I were watching one of his favorite movies yesterday, Wall-E. I am not sure what his attraction to this movie is, but I do think the relative LACK of dialog in the first half of the movie is a plus. I know he loves the expressions that Wall-E shows; the movement of his robot eyes, the quickness of his actions, the 'vocalizations' he makes.

And the music. Specifically, the soundtrack from 'Hello Dolly' that provides the background music for the movie.

As we watched the movie for about the 1000th time, I started to sing along to the movie "....if only, for a moooo-ment, to be looooved a whole life loooooong...." Or something like that. And Jonathan became utterly fascinated with my singing. He opened my mouth wider, looked inside as if to find where this noise was coming from. Now in the spirit of full disclosure, he may have been wondering how the human mouth could make such a god-awful noise. But he seemed to be honestly trying to find out where the sounds was coming from.

Slowly, I sang the refrain over and over again. He opened and closed my mouth, peered inside, and eventually brought his mouth close to mine, opened his and emitted a tiny "ahhhhh".

He was trying to sing!

I realized then that I have never heard Jonathan sing. Not even random sounds to music. He has never even tried. He listens to it, and thinks it is great when we sing, but he never has tried to make the sounds himself.

Until now.



Saturday, August 22, 2009

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


Wednesday, August 19, 2009

Choices


So, it all started with a friend getting a new job...

She leaves her job. Her job is now open. And I could get her job. A job I would probably love to have, and one in which I believe I would be well qualified for. Hmmmmmm....

And so the conversations begin. My hubby is all for the new job, if it was offered to me... "great opportunity" and all. But here is the significant rub....

It is a position during the day, and we do not have daycare for the J-man.

Now, I have loved this... the no-daycare thing. I liked the idea that WE are raising Jonathan... as flawed and freaky as we are... and that we didn't have to send him to daycare. I have nothing against daycare, actually... and at this point I am really starting to believe that it might do him a world of good....

But lets face it:

I have control issues.

And releasing my language-challenged, cute as a button, 'special needs' boy to the care of strangers??? Please. I go to every speech and OT session. EVERY ONE. Me, in the room. I am sure the therapists roll their eyes when I leave. So I have some serious control issues.

However, we are coming to a crossroads with Jonathan. I see the gains he has made this summer... and they ARE kick butt.... but we can do better. And I am starting to seriously feel like peer relationships and social situations might be enormously helpful. Plus there is the other issue: my own growth and development. Three days before my due date with the J-man I was offered a kick-butt job within the hospital. More money, status, clout (well, a little more of each). And I turned it down because in the end it was more important for me to be with my little man. I wanted to be his mommy first. I still do. But I am starting to think that he doesn't need me quite the same way. That I could let go a little and see if he might spread his wings.

Ahhh... back to control issues....

So, I have no faith that any daycare nearby can meet his needs. Except one: St David's Child Development Center. This one has seriously good potential. St. David's offers a integrated daycare/preschool program which provides services to both typically developing and special needs children. They have a Special Needs Coordinator who specifically works with the teachers to incorporate the IEPs or IFSPs into the classroom. We toured the facility and it was beautiful. GREAT gym, wonderful playground, and in the classrooms there were lovely children. Children with hearing aids, children with down syndrome, "typical" children, happy children everywhere. Plus, the school provides private speech and OT on site. The problem? It is 40 minutes away... the wrong direction. So, do I take a new... full time job... and have a nearly hour and a half commute so Jonathan can go to this school? Is that good for him? For us?
Ahhhh...
Pia

Friday, August 14, 2009

With the Signs come..




.... more vocalizations. A LOT more vocalizations.

Suddenly Jonathan gets that sounds/vocalizations and signs "get me things".

Signing 'more..please..open' while standing at the door: Let's go outside.

Signing 'more.. please' while saying "Bub" with mom holding bubbles: Blow more bubbles woman!

Signing 'help' while saying "Huu" : Help me already.
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Signing 'help' while saying "Up mam" : Get out of bed and lets go downstairs.


For those on Sign Watch, our new signs include:
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Daddy
Milk (used for juice too)
Help
All done
Chips/Crackers
Choo-choo Train

For those on Word Watch, here are a few new words/vocalizations:

Ish (Fish)
Huu (Help)
Mam (Mom)
Star (really, star?!?!)
Bubb (Bubbles)
Bo (Boat)
Up
Dog

So much progress in so little time!! It is fabulous! Of course, we still have a long way to go but it is so encouraging to see that something is changing for the better for once!!!

Alas, with the signs come..... temper tantrums. The J-man has always been good at them... he has a flare for the dramatic. But their frequency has increased. I am chalking it up to his newly discovered language skills. He has enough 'language' to understand the concept "language gets me things".... but not enough to have all the tools to get his point across. PLUS, he is now starting to realize that even though his words have power.... mommy can still say 'no'.

And that just pisses him off.

I just love it.

Pia


Saturday, August 8, 2009

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.

Friday, July 31, 2009

Manners



"More"




"Please"

He might be a J-man of few words, but he is polite!!!

Sign #9 for those on sign watch.

Pia

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