Cruising

Life isn't always about me freaking out like some sort of chicken little.  We do tend to celebrate around here.  And this is one of those moments I ran to try to capture.

That video up above would be Zach and the Good Doctor returning from taking a ride around the block on their scooters.  It's a phenomenal event for us. 

One of the things I think Steve and I were always concerned with post diagnosis, is how much of life would we be able to share with Zach?  The Good Doctor and I basically got to know each other from shared interests - computing, running, hiking, dining, old movies, dogs.  A perfect day for us in our pre-children days would have been to wake up, go for a hike with the dog, get home, shower and off to our favorite restaurant we would go.  Man, I can barely remember those days.

I have been a little bit frustrated that biking wasn't coming along very quickly for either of the kids.  A friend had a scooter at her home a few years ago that was a little different than the ones I saw at the local stores like Target or Walmart.  She went on to tell me that her son's preschool had these and he liked them so much she went online and purchased one to have at home.

We managed to get one for Zach and asked the therapists to help Zach figure it out.  Yeah, well...  The kid must of thought we bought him a Segway because he stood on it and that was about it.  He looked as though he expected it to self propel.  Or more likely, he's got my number and knew I would push him, which I did. But in all seriousness, I have heard some of the therapists describe motor planning issues, and this likely was one of those things with Zach - a circuit just not fully formulated in his ol' noggin.

Anyhow, it felt like another bad investment on our part,  until Dear Daughter stepped on it and off she went!  It was such a joy to watch her take to something so readily, when quite often, when it comes to motor skills, it seems she does not.  She looks so beautiful with her hair peaking out from under her helmet only to blow in the breeze. We were off to buy her her very own scooter and she rides it nearly daily.

She pretty much thinks she is hot stuff on the darn thing, and I am not about to tell her different.  She has even considered making videos of how to ride a scooter and some of the different stunts she can do with it.  She told me the videos are because she wants to train others how to ride it.

Meanwhile, Zach stepped on the scooter just a few months ago after watching his Big Sister doing her thing on it.  He went on to make a few motions of pushing off the ground with one foot.  I was shocked.

Within a few days, you would have thought he had been riding the thing for a year and not the days it took him.  Most kids have a gradual progression when skills are aquired.  Not my kid, he makes leaps and bounds after literally years of flatlining. 

Moral of the story?  Never give up.  Just keep trying. No matter how it might feel.

I am so glad the Good Doctor has something he can share with his son.  I can tell you that it means the world to us to be able to do this with him, and I think he thinks it's pretty cool, too. 

On nice evenings, after dinner which is usually NOT from some fabulous restaurant, we will grab the dog on her leash, get the kids protected with helmets, and off we go for a half mile scoot around the block. 

It's on evenings such as this I think to myself:  This is all we ever really wanted.  Life is good.

Breathe

Exhale.  I am happy to report that Zach is again consuming liquids and solids on his own, without any prompting or any encouragement.  This is different than it has been for the past 6 days. I can once again sleep and quit playing Google doctor.

Something was (is?) up with him but I have no idea what . After a few days of seeing him not quite himself - I verified that there was no fever.  He continued to go to camp, which runs from 9am-1pm, then to speech, occupational and physical therapy (1:30-2:00 pm) and then back home to the in home therapy from 2:30 - 4:30.  It's a busy schedule - and despite him not being himself, he seemed to want to go and participate, so I had him continue. In his home program, the therapists commented that although he certainly was not being himself, he actually did better than ever with some of the programs they were working on with him.  It was almost as if he didn't have enough energy to oppose the demands being placed on him.   

In fact, when presented with a new program - rhyming words, the therapist said that he was scoring about 80% correct at the first time ever being tested with his ability to match rhyming words, a skill that we never explicitly taught.

Although he didn't say much, and perhaps even less than usual, one word became very prevalent in his vocabulary: "No"  If I asked him just about any question, from "Do you have to go potty"  "Do you want the iPad?""How do you feel?" "Do you want milk?""Do you love Mommy?" "Do you want to swing?"he almost always seemed to answer "No".  Preferred activities and foods all had a "No" response if offered.

Now here in lies some of the difficulty.  Was Zach sick? There were no other symptoms: no fever, no nausea, vomiting, runny nose.  Zach just wasn't eating and barely drinking.  Was it behavioral?  In other words, was Zach trying to express himself by not eating? Did he not feel well one day, and then it became a habit to just not eat?  As much as I asked him if he was not feeling well, played with the words and restated my question "Is there a boo boo?"  "Do you hurt?" "Not feeling good?" he was just incapable of telling me what was going on.  I said in a post to my facebook page:

His lack of communication is excruciatingly hard at times like these.

 His skin tone became ashen.  Just when I thought it was time to call the doctor, he would drink a glass of orange juice and eat a cracker.  Then the next day, he would once again not eat.  

Some may ask why I didn't just bring Zach in to the doctor.  Well, Zach's last trip to the doctor was not a positive experience, and that was to have a mandatory TB test in order to be eligible to have an evaluation by a local agency for a communication device. (uugghh)  I get a little tired of the stressful visits to the doctor slowly making each subsequent visit more difficult.  All it takes is one person oblivious to Zach's needs in combination with an insensitivity that makes you wonder how she got her job in the first place to set in place a series of stressful encounters that seem to escalate with each iteration.   His lack of communication means he doesn't understand the necessity for these events.  His limited experience with these events means we don't have the requisite repetition for him to figure it out on his own. Add in that the few iterations we have progressed through have had a few people who should not have been in the line of work they are in, causing Zach undue stress and confusion, we are certainly plagued with trepidation.

So before we decide weather or not to expose our son to yet another possible traumatic event, we have to pretty much do a risk analysis, deciding what the probabilities of it actually being in Zach's best interest to proceed or not.  Depending on the day, we likely would not meet with Zach's primary pediatrician who at least knows what Zach's version of autism looks like, or acknowledges that Zach has autism and isn't just a brat.  It is so hard for me to watch another health professional with little understanding of autism try to engage Zach in conversation.  What is even worse is when they see his diagnosis in his chart and then discuss things about him like he isn't present. 

When Zach began to drink and eat, the color returned to his cheeks, I literally took a deep breath and let it all out.  I know my stress level is pretty high, I have been aware for about 9 months that my breathing is so shallow, when my stress goes even higher, as it does when I worry about him, or an occasional Sophia issue, I notice just how shallow my breathing is that I actually am almost holding my breath.  My normal state of breathing is as if my chest is constricted by a set of rubber bands.

From a facebook post from my Autism Awareness series:

Most understand that parenting is stressful. Logic would conclude that parenting a child with developmental delays is even more stressful. Research indicates that parenting a child with autism is even more stressful than that of a child with developmental delays. One report indicated that mothers of children w/ an ASD had cortisol levels that occur when there is chronic stress, consistent with people experiencing chronic stress such as soldiers in combat. However, unlike combat situations, the care of some children with an ASD can be lifelong. Another study indicated that levels of social support were the most powerful predictors of depression and anxiety in mothers. Furthermore, informal support appeared to be a more effective stress-buffer than formal support. Many parents often cite that family and friends often alienate them after a diagnosis.

I have always wanted to express a way to explain the stress - and that is one of the reasons I made a point to post this to my facebook page. Now that might explain a bit about the stress factually, why it is what it is, that it is real, but it doesn't give the readers something they can relate to as to how it feels.  Now some people might not find the situation stressful - I don't seem to meet them though and unfortunately,  I am not one of them . One mom I befriended on facebook stated in an online article that homeschooling was the sure way to relieve her stress - no more CSE meetings, problems with the IEP, issues with bullying.  Believe you me if I say that didn't get me thinking.  I don't necessarily always find the autism to be an issue, and it isn't Zachy - he is a joy!  But the process, the mounds of paperwork/red tape, the lack of quality control, the lack of resources, people's insensitivity, people's ignorance - these are more often than not the cause of the stress.

Anyhow, it took me 6 weeks, but I had the opportunity to read a book that I felt finally captured how to explain the feeling to those who haven't been through it:

... the first time you notice your baby picking up a marble and putting it in his mouth or the first time you take your eyes off your toddler in a bookstore and he disappears, for a second, just a second, you are reminded. Yes, you think, I remember that feeling—that’s dread. Of course, when you learn your child has autism, that dread not only returns, it settles in for the long haul.  From Bad Animals by Joel Yanofsky

Now, I am not found of the word dread in the above passage because I think most people think of dread as reluctance.  However, the other meaning of dread is extreme fear, and that hits the nail right on the nose.  We live basically in fear for the unknown, because in the back of our head we see all the things that can go wrong.  We are constantly trying to predict the possibilities and then plan accordingly.

Most importantly is that Zach is back to his normal smiley, energetic, mischievous self.   I just need to remember to breathe.

Play Ball: Baseball Part Deux

The boy can't talk.  He can say some words, usually uttered when he is requesting (or should I say demanding??) something like food or a movie.  Even though he doesn't say much, I sometimes feel like I have a pretty good handle on what he is thinking and feeling.  I suppose this is an acquired skill of being with the Good Doctor himself, Zach's dad, for the last 12 years.

But there are some things that I know others can sense about Zach, too.  I recall in our early intervention days a few of the therapists discovered what I thought as well:  Zach's favorite color is green.  But how can this be?  If someone cannot express something, we often feel they cannot know something.  Thus is the problem with autism, and more-so with some of the tools and tests used to identify skills and IQ.

Anyone who is married likely understands that spending time with anyone, you see what they gravitate to, so words are not necessary.  In fact, all too often I find with my neuro-typical peers and their supposed more intellectual and communicative abilities, that sometimes words run contrary to actions. And though I have been party to this myself, I find that some people live in this constant state, protecting themselves and their interests at all costs.  Sometimes I have heard this referred to as "loyalty" or "self preservation". This is the "real world".   I just have to laugh that many people with ASD are said to live in a different world.  This world is probably more real than the world that many of us live in with lies and deceptions being tagged with positive spins.  I was asked recently if someone telling me that my dog was fat upset me.  I guess it did a little - and I have to think: why is that? I would guess that it initially feels like they are questioning me and my abilities. But why when faced with possible truth do we get upset?  Why not heed it as someone looking out for us?  Is this more of a woman thing?  (for certain topics I would say: absolutely!)  Being around the stoic and factual as long as I have been (dare I say that would be a class of people called engineers?)  I realize too many people don't know how to deal with truth nor diplomacy in its execution.  I am most likely one of them but am working on it. I went and asked a few animal professionals about Dear Doggy's weight and they concurred with my relative: they told me that extra weight can lead to joint stress in larger dogs so it would behoove us to get Miss Lucky's pudginess under control. So weight watchers for pooches here we come.

And so this brings me to the topic of Zach and Lucky.  Yes, he likes the dog.  You might never guess it since sometimes he appears to all out ignore her or look past her.  When I ask him to pet the dog, once, and no more, a single glide of his hand across the head and partially down the back is all he offers.  It might look like he does this begrudgingly, but I don't think so.  Lucky doesn't have the straight lines that Zach favors, the bright colors, and monstrously huge eyes that he seems to like in other characters.  But she has just the right amount of in your face "you must love me" or "you must pay attention to me" that seems to engage Zach from time to time.  When Zach wants to flop on the ground, as he occasionally does in order to get out of doing something he doesn't prefer, Lucky appears to interpret this as a call to playtime.  She quickly charges the lump on the ground and readies herself for licking.  All it takes is hearing the tap on the hardwoods of Lucky's nails and Zach pops up like a piston on a V8.  With this being one of their main courses of interaction, you would think: "Really?  You say he likes the dog?"  But indeed he does, and thus is the reason Lucky has a solid 10 to lose.

Observation indicates that Zach's favorite activity with the pup is to feed her.  Especially when we are not looking.  And he doesn't feed her food he doesn't like, recall that Zach likes his veggies: green beans, carrots, peas, broccoli, cucumbers, etc.  Yes he shares the things he loves the most which just happens to be the most caloric and possibly toxic to our dear little pup - things like brownies and ice cream.  He does it so subtly that it is often just seeing Lucky licking her lips meanwhile seeing that Zach's plate has unexpectedly emptied are the only clues I have been offered.  Yet another reason I want a video surveillance system in the house. And so they are totally best buds, the kind that have that behind your back sneaky attachment to one another. When I purposely watched him share his food with her today, he carefully broke his caramel flavored rice cake in half and offered her the larger half.  (larger half: as a fairly knowledgeable mathematician, I have to say writing this if offering me some tic-like side affects.)

And then there is baseball.  I had always wanted my kids to play sports.  I also knew that with Steve this would be a bit of a challenge since he is not the least bit interested in sports, and cannot stand the way most people conduct themselves at sporting events, including 7 year old girls soccer games.  I have to admit, I concur that many a fan can be accused of behaving badly.  I also try to explain to the Good Doctor that many people find sports as an outlet for pent up energy, anger, resentment.  The act of sports themselves as well as the cheering allows a way to release these anxieties.  Of course this is only theory.  I had to find a way to justify my crazy family.  You see I was raised in a house where screaming at a rectangular box with a CRT was not an uncommon experience, long before Windows and the concept of reboot were born, and I had to explain this rather odd behavior some way, so it was the theory I derived myself.  It helps me to view those I love not as the maniacal obsessives they were.

Zach at the Chief's Game

Zach had loved balls when he was younger.  There wasn't much encouragement to play with them, though, I admit.  So earlier this year, my niece Megan had told us she scored some free tickets to a Chief's game and asked us to come along.  I hopped at the chance, and the Good Doctor was told he could bring a magazine or his iPad to get through the experience. Thank God the weather was perfect. Well, Zach sat through all 9 innings - and even watched the game.  Yes, he was given french fries and cotton candy, but he had a smile on his face even without the accoutrements and it was just and awesome evening.  I knew his observation was taking in the experience.

And the offer of Challenger baseball then came up.  I once again jumped at that chance.  I knew it would make life busy - twice a week, but felt he needed the exposure.  Challenger baseball is a division of Little League baseball with "30,000 children participat[ing] in more than 900 Challenger Divisions worldwide."   If you live in an area that has a baseball stadium, you most likely have a Challenger league in your area.  If you want to do something nice for yourself - go check out a game sometime.  It is by no means competitive, but I view it as an exposure for Zach to learn the nuances of the game.  And he has!  Last week he even hit off a tee himself.  He runs all the bases although we direct him where to run and how far.  My wish is to get him on a regular team one day - I know he likes it and something in me tells me to make this a priority for him - so we occasionally pull the tee out at home and I have been practicing throwing and catching with him on the trampoline. 

OK - so what is this about?  Reciprocal interaction is challenging for many on the spectrum, and indeed is one the challenges for Zach.  A simple game of catch can be so difficult for him to grasp.  I am not sure if the motor issues are a problem or the concept of catch is a problem.  I am often fooled into thinking that Zach has no fine or gross motor challenges since he met most of his all of his milestones on time and didn't require services to support motor issues as he did with speech when he was younger. 

But simply asking Zach to do a thumbs up creates confusion for him and his attempts are often no where near the real thing - one reason we didn't push Zach into learning how to sign.

It didn't take long to realize we chose well, Zach really seems to enjoy baseball.  His coach even posted to my facebook account "Zach loves Baseball:-)" with some really nice photos of the event which I previously posted to my blog. Nearly every picture of Zach taken shows that smile on his face that I am trying to ensure never leaves.  He didn't need to say it - just observation let's you know it.  Words are unnecessary. 

And yes, that would be Sophia along the third base line.  She has taken this position to help runners at third
find their way home.  And she loves it.

So we are a baseball family now - the Good Doctor brings his mitt to help field balls, I bring water to hydrate the players, Sophia has even asked to play on the team!

It's times like these that are a little bittersweet - I think about my Dad - how he would have cheered Zach on and practiced with him.  My Dad the athlete who truly loved nearly all sports - who would call his brother in Atlanta and watch the Braves game together.  My Dad who was thrilled when my grandmother revealed that Carl Yastrzemski  was a distant cousin of hers.  That being said - Sophia and I have declared ourselves a Yankees family - so fear no more NY fans.  :)  I have to think the Good Doctor's Dad would have been similar - he played sports and coached as well as tuned to the games.  


With that, I bid you adieu, to remember the games of catch I played with Pops and think about the ones I am going to try to get Zach to play.  So lucky to have this opportunity for my son.  Play Ball!

Baseball!

Out of the silence

One of the things about living life to its fullest is that there sometimes leaves little time for reflection. Many a moment, thoughts of what is going on in our lives and what it actually means, especially for the long run, cross my mind. I have always been someone who has contemplated my life. I have also always been someone who is told that they over-think things. And I do. Analysis is just part of my normal thinking process. And I analyze just about every facet of my life, even what toilet paper is the most appropriate choice. Wish I was kidding. I am perhaps a little fastidious about the mundane. Is it surprising why I get overwhelmed with life so easily? But I'd also like to think that I concern myself with more important matters, such as my childrens' futures. Clearly not as trivial as toilet paper, this topic is much more difficult to characterize. And I can contemplate it for hours if given the opportunity. Which I am not given. Ever.

Obviously one can only predict so much about the future. But most people can ride the bell-curve. For those non-statistical types, what I mean by this, is that most people can expect some basic things about their future at age 42 in their lives: children will become independent, most likely go to college, get a job, marry themselves and reproduce, you will retire in your late 60's, die in your late 70's and fill the time in between doting on grandchildren or pursuing hobbies or traveling, in between all these events will fall life and it's continuing (sine?) curve of ups and downs. Well, that particular bell-curve isn't the future of many of us who either have special needs or love someone with special needs. First off, at least in my case (and research indicates many parents of children with autism are similarly affected) I have already retired. While some Moms are able to continue working, and find it imperative to do so, my fastidiousness with life's details made it impossible to hold down a job while navigating the autism highway. There is so much to pay attention to, that I literally am researching or probing some autism related topic at least once a day. Yes, every day. There's the medical side, the legal side, education, services, behaviors, therapies, modalities, and data taking ...a blur. Then there is the independence thing - yeah, I have no idea what is going to happen there. Let's just leave it at that for now. Go to college? What will college be like when my kids are ready to pursue higher education? Costs are sky rocketing for college (beating inflation year after year). Will it be virtual? No more campuses and expensive text books and dormitories? Every day there are more programs being developed for those with special needs. What will be around by the time Zach is of age?

Marry and reproduce. My mother asked me if I should discourage Sophia from having children of her own biology because of the purported hereditary influences of autism. Yes, that would be my mother. (ugh, *sigh*) I thought potty training was tough with a non-verbal child. Can't wait to see what sex ed is going to be like. A disturbing thought that goes through my mind is when Zach gets older, that some disreputable woman will attempt to seduce him. Holy cow. This one makes my head explode.

But nothing compares to the dread I feel of the inescapable: How will Zach live his adult life? If he lives with us - what will happen when we die? When I was little I used to fear death. As I got older and life took its pot shots at me, I became more accustomed to the inevitable, and recalled my grandmother and her seemingly peaceful willingness to move on to whatever is next, and I got it. But I have come full circle, and now fear death above everything. As long as I am alive, I know Zach will be taken care of. But there is no way to ensure his life will be safe, healthy, and fun after I am gone. Even a large sum of money cannot guarantee the care required by strangers. Do a quick Google search about abuse or negligence of those with autism and other special needs by their caretakers and you know that people who go into service professions for those with special needs who may be "qualified" in terms of credentials can also be qualified in other ways, such as certifiable predator, bully, or varmint. Vulnerability might qualify Zach as meek, thus he can more readily "inherit the Earth", but that does little to quell my fears. Does this make me a bad Christian? I barely know how to qualify myself anymore. I have friends of different faiths, and some with none at all. I don't believe that people are going to hell because they don't believe as me. If they did believe as me, they would likely be confused and scared, so I wouldn't wish that on them. I have never been an all out atheist. But I certainly understand agnosticism. I have read Scripture, I have prayed, I have accepted the fate of Jesus as saving me.

But none of this takes away the 300 pound invisible weight that  lay on my chest every day.  I am used to living with it by now - 3 nearly 4 years into this.  Some days I find it hard to breath, so I drink, a glass of red down the hatch to give my nerves a buzz so I can get on to the next task.  I know not to do this too often or too much.  There are many things I don't write about, some of them not for the sake for protecting myself, and others opinions of me, but for the idea that my son might care, if not now one day.  There are things that I do for my son, that I know no one else would do, or at least do so without some resentment.  I feel none what so ever.  I love him and just move on from the ugly tasks of taking care of him to the beautiful ones as quickly as I can.  I am a very efficient woman, I tell you.  But these are the exact things that leave me worry. 

I was once accused publicly of desiring pity.  I was told that the blog was a feeble attempt at calling to myself some since of sorrow from others.  I said little to the remark, and had those who love me respond to it instead.  For a brief moment, I wondered if the person was right.  I had never thought of myself as someone looking for others to feel sorry for them.  In fact, if anything, I had always suffered in the other direction, possibly being a little too proud to admit the failures in my life, the things I find difficult.  But perhaps this person was on to something?

And then it happened.  A chance meeting of someone who inquired as to Zach and a discussion of his progress and the amount of effort put in by me and others to help him achieve some more meager milestones than some typical peers.  And the look.  And the comments.  And the body language.  Holy crap?  Someone was feeling sorry for me to my face!  I was outraged.  It was at that moment that I realized that my accuser of my intentions of the blog was oh so wrong.  I was so angered at the incident.  How dare someone feel sorry for me that I have Zach in my life?  He is one of the very lights in my life!!  He is not something to be looked at that makes a woman consider an abortion as so many people do with disabilities.  He is a beautiful (and I do mean beautiful) and precious and I cannot imagine my life without him.  He smiles more readily that just about any child I know.  He is smart, and can learn, if given the opportunity - most critically the people with the skills to get the job done.  He is loving and gives me the most passionate kisses that only I receive - his mother, because yes, even though he doesn't say he loves me, nor does he even call me by name, he damn well knows I am his mother and knows the difference.  And I will make sure that he always does for the rest of my days.