What Zach's Been up to, Nutshell Style

      It can be hard to jump into a blog post.  So much has been happening in Zach's world and, by connection, ours.  I think it's best if I give a sort of update to catch you up to speed.  

     Zach graduated from the county MRDD in 2017 at the age of 21.  Students can only attend up to their 22nd birthday, and we knew it would be disruptive to begin a year and then be yanked out during Christmas break, so he wrapped up his year in spring.  Zachary loved school (he sometimes still asks for it).  He was known, loved, and appreciated there, and it was the best decision we could have made to send him there.  There were snags and bumps at times, but overall Zach was very well cared for and for that, I am grateful.

     Zach's school always did a fabulous job at celebrations.  Prom, to which family members were invited, was always AMAZING, with decorations that could rival any prom any where.  Graduation was lovely, with the spotlight on the graduates.  My sister admired how the staff gave each student just enough support without overstepping or taking the limelight off the students.  Zach's teacher, Miss M, was happy to pose with Zach's first great teacher at the school, Mrs. D.  Mrs. D hadn't been to the school since her retirement, so we were beyond pleased that she accepted our invitation.  My dad was able to attend, and all of Zach's siblings were there to support him.  It was wonderful. 

     One of the unorthodox things we asked for from our local school district was to allow Zach to walk for graduation at the public high school.  Technically, even though a student attends the MRDD school. they are still a student of the district. They were happy to let him do so, an accommodation for which I was grateful.  The local school has their ceremony on the football field, with visitors in the stands.  Miss M, herself a graduate of the school, accompanied Zach.  I didn't know how much it meant to Zach to be included this way until we took pictures after the ceremony.  There are different smiles we get when we take pictures of Zach.  There is the cheesy cheese smile, which is forced and posed ("Just take it already, Mom!"),  the really frustrated grimace smile (we are really pushing our luck at this point), and the one we see when Zach is truly happy or when photos are candid.  Truth be told, this smile is the most elusive and is the relaxed, genuine, beaming smile Zach shared with us after the graduation ceremony at the local high school.

     For an adult like Zach, leaving the world of school is not quite the exciting milestone it is for many young adults.  Instead of colleges, we visited day programs and workshops.  One of the assessments Zach went through his senior year was something the OOD (Opportunities for Ohioans with Disabilities) put together.  We were "trail blazers" they said.  Zach was a guinea pig, I say.  Basically the idea is that all people value money and want to work to make money (or so they think).  In order to determine at what level an individual can work, they are left with an adult they have never met for several hours for several days (they wanted him to do something like a full time work week but we knew that was unrealistic so we requested a truncated amount of time) doing work without any of the supports he was used to (picture boards, known prompts, etc...) to see if they can enter the workforce in an equal capacity as a neurotypical peer.  We knew Zach could not work without supports, but we also know that he was very successful at his school working in a liaison group and on crew helping maintain the school.  Long story short it was a stressful flop and it was determined that Zach could work for less than minimum wage due to his need for supports.  We could have told them in simple terms that he wasn't going to work on the same level as a similarly aged peer.  🙄  It was a colossal waste of time and, I assume, state monies.  Maybe it works for some people, but like many things, was not set up with somebody like Zach in mind.  It is interesting to me how many programs that are meant to "help" individuals actually set them up for failure.  

     After looking at several day programs and workshops we decided to have Zach attend a day program that was like a mini - farm.  He was to help take care of animals and continue to work on math and reading and other academics.  This was important to the owner.  As someone who had worked with disabled individuals she noticed a lack of continuing education as people entered adulthood, and it helped her decide to start her own place.  The setting was small and cozy and we liked the owner's philosophy and down - to - earth nature.  They were willing to prepare gluten free food we sent in for Zach, and willing to accommodate him in ways that were more flexible than other places we visited.

     Fast forward to today, and Zach is still attending this day program.  We know and care about the owner and her family.  The facility has grown and I often recall a dear friend's words about finding programs for Zach.  Basically there will never be a perfect fit, but what we can do is look for the BEST fit.

     I think I will leave off there for the night.  We had a big day today and a big day tomorrow.  Thank you for checking in.  

<3  Maria

    

O the depth of the riches of the wisdom and of the knowledge of God! Beginning the Journey with S2C

      I have something to admit.  I had forgotten about this blog, and also had believed it linked only to the dreaded facepage which I no longer have.  So while looking through possible blog platforms, I stumbled upon blogger.  Lo and behold I found my own words waiting for me!  

     Now is the time for a new chapter.  A REALLY new chapter.  And honestly, I would like to rename this blog and I don't know if I can.  Yes, this blog is still about my son, Zach.  It's just that we are standing at the foot of a magnificent, marvelous, miraculous mountain and the name of this blog doesn't quite capture that.  So I might try to see if there is a setting I can change.

     It is very late and I am not going to write too much tonight because I am not in the right mindframe and I HAVE to get a good night's sleep.  So for now, dear readers, know that there are exciting things going on in Zach's world, and that means I get to experience these things in my own way, as his mom.  I hope to let you journey with us soon.  Until then, goodnight.

Tears unbidden

Before you read on, I want you to know this is not a post about Zach in particular.  It is about me, his mom, and my own grappling with life.  So I know this blog is about my son Zach... but he wouldn't be my son Zach if I wasn't his mom, Maria.

So nothing really traumatic is going on.  I just stopped to think.  And feel.  And it hurts.

It is much easier for me, as Zach's mom, to push my feelings under the carpet... to just go on autopilot and do what needs to be done, than it is to think about things with any real depth.

But I did, because somebody offered me an evening of uplifting.  In a church, with music and prayer and stuff.  But even the THOUGHT of this event made me cry.  The tears came, unbidden.  They streamed down my face in rivers.  And now I have to decide, do I want to go, to feel vulnerable with people I don't know, who most likely handle their child's disability BETTER and with more composure than I do?  (This has happened to me before, I speak from a place of knowledge).

Because sometimes what I really need is time to feel NORMAL, time to be away from the reality of my life by

Just
Being
Me.

A woman who needs a break, who needs to laugh and feel for some measure of time (a vacation!) as if I am not tethered by the gnarly, course, wicked ropes of autism.  TO GET AWAY from it for some much needed respite.  I am not sure being in the company of other people telling about how great their lives are living with their child's disability and handling things like super heroes is going to be much of a respite.  I imagine it will probably be more of an emotional upheaval and I will cry in front of people who have it all together, who don't get my emotionality, who will feel uncomfortable in the presence of my tears.  I am not good at hiding my real feelings.  I never have been.  I imagine myself coming home more exhausted than I left the house, curling up in my bed for more tears.

If nothing else, I know myself.

But I don't know how to politely refuse this offer... to say "I would much rather go and get some ice cream and watch a good comedy" or to say "I am not sure I can handle this at this time, but I do appreciate your offer."  I have had difficulty communicating with this person whom I love... I can't seem to get it right.  The reception is never quite what I imagine it will be.

And I am sure that is how she feels about her offers.  That she keeps trying but the reception is never quite what she imagines it will be.  I wish I could be the recipient she wants me to be.

But I am only me.  And it is easier if I don't think too hard.

A new day

As I suspected, I am feeling much less frustrated today.  Sometimes the intensity of information and handling it can be quite overwhelming, but maybe it is not a bad thing to let you see this side of my life, so that if others process in the same manner, you will know what they are going through.
    One of the "exercises" we have to do with Zach is something that makes me think of drawing imaginary cat whiskers on his face with our finger.  You start at the outer edge of his cheek and work to the corner of his mouth.  Today he was doing it to himself :)  I am not sure if it works to do it yourself, but it is sort of neat to see him take an interest in it.
     I plan on having the school incorporate one of his three exercise sessions into his day and actually having it written into his IEP.  Lately I feel as if his IEP is not as meaningful as it should be.  I don't see much growth working on what he has been doing and I really want to revamp it... I just wish I knew how.  I am not sure the teacher, though a nice young woman, has a real vision for him and I feel as if we are treading water, going through the motions but not making any forward progress.
    And, now... something I dread to have to tell you.  But I must.  We will have to limit Zachary's "screen time" due to the belief that computers and t.v. are stimulating the left side of his brain and not the right side of his brain.  I know this is sort of a downer... for you all who helped to get the iPad for him and also for me.  I have only ever heard good things about how it is so good for people with autism.  But the principle behind Brain Balance is that in order for the brain to be balanced, the right side of his brain needs to "catch up" in order for the two sides to work together.  Zach IS very good at the computer, as are many kids who have autism.  This is because his left brain is so strong.  This does not mean he won't be using it at all, rather that we will be using it to find things that he can use to stimulate his right brain... mostly music (low tones and slow music.  I want to look into this because it is intriguing to me).
    I also want to look into supplements, as these are not offered to people outside of the BB program, which seems a bit shortsighted to me.  There are probably other things out there... so if you know of anything, let me know.  Fish oil in a form that taste-sensitive individuals can handle would be a BIG one.

    Finally, thank you, whoever might possibly be reading this, for caring enough to share this journey with us. None of us knows where it will take us in this life, but it is nice to know we don't walk alone.  It is a beautiful day today, speaking of walks!  So I hope you get to enjoy some sunshine as I know I will be!

Maria

PS later today Monica and I will be helping at Jason Runkle's benefit, one which helps to pay for his BB tuition.  I am so blessed to be able to help.  His mother is seeing tremendous results and THAT is a beautiful thing of which to be even a very very very small part. <3
   

Brain Balance Assessment

We had the 2 hour assessment review from Brain Balance today.  It was fine while we were there, a lot of information.  As simply as possible, the system uses the image of an iceberg (with many underlying layers that are unseen) to explain how a person develops.  The very simplest of the things we develop (or should develop and then develop PAST) are primary reflexes.   For those of you who have or have dealt with young babies you might recognize the terms rooting reflex, moro reflex, etc... which are the primary reflexes.  There are other layers beneath but closer to the surface, and the top layers which people around us see, our academic ability and our behavior (those being the "tip of the iceberg" so you have to address the underlying layers as needed first).
    Because Zach is so severely affected by his autism, it is believed that the root of his difficulties BEGINS with a lack of growing past all but one of 8 of the primary reflexes.
     While in the office I was ok hearing these things, but now, as I sit here and try to write about it, I am brought to tears, which is probably not helped (well the TEARS are probably helped but I am not!) by my peri-menopausal PMS hormones (MUCH crazier than when I was younger).  I am sorry if this is TMI for you, but it is simply a fact of life and I am trying to be transparent and honest.  Where I am in life certainly plays a role in the way I process things.  Remember when you were young and you thought you could conquer the world?  I am so past that.  
     At this time the center feels the best course of action is a home program, because they do not deal with primary reflexes.  Zach has to grow past them in order to even be "ready" for their services.  The upside is we couldn't afford it anyway.  The downside is now, as I have ever felt (and always struggled with the failures of), it is all up to me.  I am Zach's only lifejacket and I am old and worn from so much struggling that I feel as if I am not up to the challenge.  But I have to be, I have no choice.  I WANT to be strong for him, his champion, to just take charge like some super strong has-it-all-together woman, but being strong over a long course of time is really really tiring.  He's not a 3 year old.  He's 17, and we've been at this for a long time, he and I, and our little family.
       If you want to see me as a wuss, I will probably read this in a few days and be embarrassed at this truth myself and be right there with you.  But if you want to know how this really feels, right now as I sit here, I am raw, these emotions are real and they are a part of my life and Zach's life as well.
     Dealing with the emotional and guilt-ridden mommy part of this has me feeling exhausted and depleted.  I am not sure if anybody can really understand this feeling.  I am not even sure I do.  There is something really weird about hearing your kid hasn't grown past the ROOTING reflex.  I know the center director shared that her son had these issues as well, but it just seems so WEIRD... and somehow that I should have noticed it (it is something I can't "SEE" but this is what their testing showed).  
     We have been given the book "Disconnected Kids" which should be a great resource.  I will figure out a schedule for Zach to perform his daily exercises (3x a day for the next 6 months or so, at which time he can be re-assessed.), some of which are simple and others which are more likely to be met with resistance.  I am confident that if I teach Chris (Zach's older brother) how to do the exercises with Zach, he will likely be very willing to help with them, so I will have that help.  We have been given this opportunity to try something new with Zach.  It is a tremendous gift and in time I hope it re-opens the doors of hope.  I say WE because I am hopeful that I will get the help I need... the additional support Zach needs to get this done.  Putting on my big girl pants and wiping my snot on my sleeve.  Moving forward.  This IS a blessing... just one with startling revelations.  There is nothing that rattles your cage like seeing the depth of your child's struggle and feeling hopeless and frustrated that nothing you or his educational system or anything has addressed this so far!   Now I have some keys and can start fitting some keyholes... what I continue to need are prayers and support.

Thank you for caring.

Maria

That's what little brothers do

On Saturday and Sunday Zach attended Brain Balance in Canton to be assessed for their program.  A lovely lady gave us a certificate for a free assessment and goodness knows if we can find anything that will increase Zach's quality of life we will do what we can to make it happen.  She has seen great progress with her son, who is 15 and wanted to extend the blessing.  I am grateful for her hope for Zach, for her extension of love and blessings.
     Sometimes it is hard not to have mixed feelings, though.  I was excited for Zach (much less so for the drive)... and also worried he would not be able to let them know what he knows or that he would get frustrated and overwhelmed.  It turned out he did well, handled everything they asked of him without getting upset at all.  For that I am thankful...   but deep in my heart of hearts I am afraid.  Afraid to hope, afraid of smoke and mirrors, afraid of so many things.  I hate to admit how much of my life involves fear, but here I am, vulnerable and open. 

    I am afraid.

  What if they don't think they can help Zach at all?  Somehow even though there have been long periods without much progress, hope is an important part of dealing with the struggle of autism as it affects Zach and, indeed, our whole family.  What if the answer is "there is nothing to be done to help enrich his life. Go home.  Continue as you have been."

     But then, what if they think they can?  I know, I know, that is the point, right?  The whole point of his being assessed and traveling back and forth 1.5 hours two days straight.  But a lot of this situation is daunting.  The travel, the expense (which I only know is "very expensive" but have not heard any real figures yet).  The certainty of UNcertainty!  If there is one thing having a son who has autism has taught me is in life there are no guarantees.

     And the worst thought of all, what if they say they can and they actually can't?  It hurts to even think about this possibility.  I know that the person who brought the program to Canton believes in it... but what if they are wrong?  What if we invest our hope, time and money in something that fails?  I don't think my heart can take any more hits.

    It is a tenuous tightrope walk.  Daring to hope, we cling to our umbrella of knowns, hoping to cross between what is and what could be.  Don't look down, don't look back, keep your eyes focused on what is in front of you.

    I guess I just wanted to be real for a moment.  I want to be positive and hopeful, and I work at it, I really do.  I put my trust in the Lord.  But I am still human, and I 

Am

Still

Afraid.

Zach loves his new tool

Here are some pictures of Zach enjoying his ipad while Linus looks on.  I am still in the "discovery" phase of finding apps that are good.  I am looking for more educational apps.  My friend Cheryl clued me in to Bugs and Buttons, which is great.  I will admit Zach does also like bowling apps and Temple Run.  He has always enjoyed adventure and chaos!!!  I wish I had gotten more suggestions (more than zero) from Zach's SLP... but I guess this is a learning situation for all of us.  I can't figure out how to write more (besides captioning) beneath the pictures, so I will just add it here: if you have not been thanked in any way other than in the written word, you will be!  One or two people at a time.  THANK YOU!!!!!!!!!!!  And in case you were wondering, yes, Zach's Pepsi shirt is his favorite shirt!  :D

I love Zach's little grin.

A picture of my three sons... because I love them and they love each other! <3

Happy birthday Zachary!

Zach and Linus enjoying watching Monica try her hand at "Perfection"

 Pete and Zach posing in their hats.  Zach had admired Pete's Christmas present (an Alastair Sim style hat I had to give him early for the season) so much we thought he would enjoy a bowler.  He seems to like it!

 Singing "Happy birthday" (Linus helped withthe candles, as you can see they are sort of cockamamie).

Zach admiring his reflection in a (sort of dusty) mirror.  :)

Happy birthday to you, Zachary!

Tomorrow Zachary will be 17 :)  I am ever thankful for his sense of humor (when we were watching "Father Christmas" last night something made him laugh so hard he cried.  It was such a contagious laugh and though Monica and I could not figure out what tickled his funny bone so, it made us both laugh to hear his laughter bubbling over).  I am grateful that he likes and accepts hugs.  I am glad for his happiness, for times when he be-bops to music.  I am thankful for his sweet and gentle nature towards animals and most of the time, his younger sibling.  I am thankful that he is a part of our family.  I won't sugar coat it at all.  It is not the life I "assumed" I'd have (because I think most people go through life with certain assumptions about how things will go, including parenthood) but it is one which has challenged me to be a better person and it has shown me worlds I might never have understood had I not lived through them.

The other morning while waiting for the bus with Zach, my son took my hand in his big, soft hand and I had a fleeting "if" moment.  The "if" moment is inevitable from time to time.  Milestones make one particularly vulnerable to the "if" moment.  A moment can become a focus if you let it, but doing so would be devastating, so they are to be avoided, or at the very least, not lingered upon.  My "if" moment went something like this.  As I looked up at my nearly 17 year old son I thought: If Zach was a typical teenager he would not be holding my hand.  In fact we wouldn't be waiting for the bus together.  He would run out the door like my other kids and catch the bus himself.  There is the possibility he would already have earned his license, might have a girlfriend, would be looking at colleges to attend in a year or so.  

As I stopped myself from thinking along those lines, more deeply into the "if", I smiled up at Zach with teary eyes and  I told my son that I loved him.  I thought about all of the amazing progress he has made over the years.  I remembered the summer when he was 7 and for the first time addressed my husband and me by name!  I thought thankfully about how his struggles have made me take Linus's development that much less for "granted" as most of us are wont to do.  

This birthday I rejoice in Zachary.  In the unique, mischievous, lovable person he is.

Happy birthday, Zachy!   

I am sorry I haven't been continuing the story as often as I would like.  I am sure you are feeling the busy-ness of this time of year, too!  In case I forget, MERRY CHRISTMAS to you all!  <3
Maria

Education

I am inserting a backtrack in here... before we went to the neurologist who diagnosed Zach, he was seen by one at the Cleveland Clinic.  Zach underwent a CAT scan (had to be put to sleep and even asleep he refused, physically, to lie on his back so they had to scan him lying on his side.  It was a harrowing experience during which a nurse argued with me about something but then an attending doctor told her "this is his mom, she knows her son!"  YAY for that doctor).  The doctor who ordered the scan told us this: "Well, his brain is all there... he could grow out of it or he could not."  That's IT!  You see, Mrs. M, you have a nose on your face...

When Zach was six we began looking for a house.  We were living in a 2 bedroom 65' x 15' mobile home.  When I see them now I have no idea how we fit in it, but I do understand why it was so cluttered!  (Unfortunately we followed with an old house with few closets and no usable basement... Hmmmm.)  Our first concern was, of course, affordability.  The second was always "what can the local school district offer Zach?"  We looked in many local cities, townships, villages.  When we settled on a house in Kipton, it was largely because the school district was supposed to have a great new fabulous program for autism.  
    Leaving the Amherst preschool was one of the hardest things I ever had to face regarding Zachary's education.  My gut told me something about the new school was not in line with my own educational philosophy.  I wasn't wrong and I will keep this short and as sweet as possible.  After several years at the school in our district during which we requested a new teacher (my sister-in-law Teri came to that IEP meeting for moral support and to help me speak when I couldn't find the words.  I am so blessed to have a family that cares!)and could have taken the school through due process for not following his IEP, (I am leaving a lot out here because what I have to say is not positive and I will just leave it at that), we decided that the county MRDD would be better able and more importantly WILLING to provide Zachary with his educational needs(here is my plug: SUPPORT YOUR SPECIAL NEEDS TAX LEVIES!).  It was a tough decision when it is often best to have a child educated in the "LRE" (least restrictive environment) and I will admit that in our cruel world there is a stigma that goes along with the name of the MRDD school.  I didn't want my son to be thought of as a "retard" and people can be cruel and ignorant.
    It was a bumpy start at the MRDD school... mostly because, God bless her, the teacher he was placed with seemed overwhelmed and unsuited to the job of handling a classroom of special needs students.  I believe it take a special person for this job... that they are "cut from the cloth" for this job.  An aide in the classroom brought it to my attention that Zach spent his entire day sitting doing nothing, that the education he was there for was not happening.  This aide risked her job to tell me the truth and to this day I pray that God is blessing her for that strength of character.  Fortunately, after some conversation, Zach started spending part of his day in a room across the hall, in which taught a woman who became very dear to my heart.  The following year he was placed in her room.
     Mrs. D was one of the most dynamic, loving, creative and INVOLVED teachers I have ever known.  She had been an educator for years, some with special needs and others with typical students.  She knew how to seek out that which lit a spark in her students and build upon it across the curriculum.  Zachary started to do simple math.  He learned to address people and learned how to calm himself through sensory therapies.  Zach used a weighted vest at school and spent time in a quiet area when he was finding it difficult to deal with the sights and sounds of the world.  
     Unfortunately Zachary's verbal abilities were still very stilted.  Mrs. D. was very firm and had a specific direction for him and he learned a lot of social skills from her.  Repetition is very helpful to Zach and he learned to greet people by name (not always successfully, because sometimes I think he just forgets).
     To this day Zach uses a speech pattern called echolalia, which is basically repeating what a person says to him.  Because of his lack of receptive language, there is a barrier to his understanding the appropriate response. 

I was in the middle of writing a blog continuation of our journey with Zach... but I have to tell you all


Today an angel stepped forward who wants to gift Zachary with an iPad!  

I am amazed and humbled and excited and in awe and all sorts of feelings at once.  To this angel I say Thank you for the very depths of my heart.  This is a tremendous gift you are giving and I can't wait for Zachary to start learning new things and for new worlds and avenues of communication to be opened up to him!  God bless you 1000x over in return.  <3

All money collected to this point will be used for a case, for cords, for accessories (headphones, etc...) and other things he might need.  The money will be kept in the separate account.  If you have any questions or concerns please send me a message!

Praising God for his Glorious goodness and for those who give of themselves, honoring Him by doing so.
God bless you all.  I will continue to write about Zach and keep you all posted on my sweet son.  <3

Trying not to cry and trying not to get discouraged.  Secondary health insurance is denying Zach's Prozac.  It took many years before Zach was on any type of medication.  When puberty hit, that changed.  He tried about 3 before a generic Prozac that Walmart used worked to decrease life-disruptive OCD and other behaviors which interfered with daily life.  Walmart switched their provider and we noticed immediate reemergence of destructive behaviors and OCD.  I went in search of the old generic brand at ALL of the local (and by local I mean within 25 miles) pharmacies to no avail... then we tried a handful of generics, none of which worked.  Finally got the ok for name-brand Prozac, which brought him back to an even keel.  We just switched our secondary (Health Families) insurance in order to keep our pediatrician.  and HERE WE GO AGAIN.  The co-pay isn't doable if we just ignore the secondary insurance.  Praying for a good holiday season while this gets sorted out again.  Holidays are rough enough on Zach.  We will get through this but I feel for poor Zach who has to be a guinea pig.  Thank you for your prayers.

Maria

Figuring things out

To be honest, there is a great deal that I don't remember about when things happened or how they happened.  Early on, my sister, Anita, invited me to go with her to a conference on autism.  She has a profession which leads her to deal directly with all sorts of children so I am sure she had an inkling that we might be facing this particular giant.  It was well before Zachary's official diagnosis, which didn't come until he was four (and when it did come it was in such a strange manner, but more about that later).  I remember learning a lot at the seminar but also feeling the saturation of information overload, which can happen very easily due to the elusive nature of a set course of action in the world of autism. 

      There are so many ideas and theories about what therapies and treatments will work best and we were wading uncharted territories largely on our own.  The medical profession at the time seemed to be playing "catch up" and we were all learning together.  Zachary had Early Intervention services through the county mrdd and I was not happy with his first interventionist at all and did end up "firing" her.  What I remember most about her was that she told me "you need to just accept Zachary as he is."  I felt immediately guilty.  Did my search for treatments and answers mean I didn't accept my son?  I had never thought that and her comment was honestly quite destructive.  I began to question if what I was doing was right and I backed off in my search for what would help Zach... after all, this professional thought my efforts meant I wasn't accepting my son.  It was only years later that I realized how harmful her comment was.  There is nothing wrong with wanting your child, a child of ANY ability, to achieve their fullest potential and to seek the means by which to help them do so.  Now the approach to treatment is so much more pro-active, especially in the early years, but back then I think there was much more confusion and a wait and see attitude that robbed children of precious windows when the brain is more malleable.

    The early years of Zachary's autism were filled with judgment.  Zachary was an attractive, typical-looking boy.  He did not have any physical attributes that made him stand out, only behavioral ones.  Autism is like that. I remember the looks we got while out shopping, when Zachary was having a meltdown.  I almost dared people to make a comment so I could SAY to them, "he has autism" while thinking in my mind "what's YOUR excuse for YOUR socially unacceptable behavior???"  (In this way, I, too, learned to be less quick to judge.  I know it is human nature, but I began to take a second look and make up my own excuses for people.  It helped me become less quick to make assumptions.)  Even though it made me mad that the lessons stemmed from judgment, I was always glad to teach one more person even a little bit about autism.  It was a foreign disorder to most people.  Either that or they thought immediately of "Rainman."  I would love to see a modern day big-screen documentary that follows several different people with autism.  There are so many individual variables within the disorder.  I would love to see the public get a glimpse of the everyday world of autism.

       Once, while attending a child's birthday party, Zachary decided to stand on his head on the couch.  He was still only 3 or 4, so we didn't have a firm diagnoses, but signs were pointing at autism.  Another adult guest at the party, thinking herself funny, said to my husband, "What's WRONG with your kid?" (she was one of those brassy, obnoxious types, and my husband knew her from his former job at the bank).  "Actually,"  he said, "we think he might have a neurological disorder called autism."  That shut her up... and earned me a lecture from the hostess about making her friend uncomfortable.  I still shake my head and chuckle in disbelief about what some people consider "acceptable" in social situations (asking a person what is wrong with their child in a rude, offensive, and uncaring manner) and not socially acceptable (responding with the actual answer instead of feeling cowed and embarrassed).  Perhaps it is part of MY autistic nature... but I still don't get it.

     When Zachary was three he began school at the special needs preschool in Amherst.  It was heart-wrenching to put my little boy on a bus to go to school, but he had fabulous, loving, wonderful teachers there.  They were the type of teachers who wanted to educate themselves and were constantly researching online, going to conferences, and had a true love for the children they served.  It was there that Zachary learned to use a model sentence, "I want to (verb) (noun)"  such as , "I want to eat cookie" or another favorite "I want to sing 'Row Row Row Your Boat'."  He still uses this method of communication at age 16.  It was Zachary's preschool teacher who encouraged me when she thought he was ready for toilet training, and it wasn't as hard as it might have been without her support.  It was Zachary's preschool teacher that accompanied us to Zach's neurology appointment to get a diagnosis when he was four.  The Dr. seemed surprised when we asked if he had a diagnosis for Zach and he said, "he has autism" with the kind of inflection one would use if they were telling you that yes, your ears were still attached to your head.  It was almost as if the Dr. had imagined a conversation in which he had already stated the diagnosis.  At previous visits, Zachary was missing a few of the red flags that are indicative of autism.  He didn't spin things or spin his body. He didn't line up his toys in rows.  But now, wiser for the wear, I understand more fully how individual each person is.

     Zach didn't make eye contact.  He flapped (when excited or agitated some people will move their arms or hands in a back and forth or up and down motion).  He had a severe lack of verbal    communication, especially what is referred to as receptive language - the comprehension of 
language - listening and understanding what is communicated.  His ability to express himself 
verbally or through sign (expressive language) was slow to develop and then it seemed as if 
Zach sort of got stuck at a certain age.

I felt this most powerfully when we had our fourth child, Linus.  It was at the age of 18 months that we began to see Linus' comprehension (his receptive language skills) surpass those of Zachary, who was 13 at the time.  It was very eye-opening.  I don't care what sort of tests you give a mentally disabled child (such as the Multi-Factor Evaluation, cleverly named in such a way that parents everywhere can call it something more descriptive) , they are not going to be as meaningful or as accurate as seeing at what age level a child can comprehend alongside a typically developing child.  Imagine living in a 13 year old body with the comprehension of an 18 month old!  Not to say comprehension, like everything with autism, isn't varied.  But in Zachary's case this was simply the most powerful point of understanding I had ever had.  Sometimes it is hard enough for ME to make sense of the world in which we live.  I can't imagine what it must feel like for Zach.


Now I know I am jumping around a bit, but I want to keep up with what Zach is currently doing.  Zach is part of "The Crew" at Murray Ridge School.  He helps clean, run office errands, collect bibs and do laundry with a group of students, learning vocational skills and enjoying being a part of a team of peers.  We went to the ceremony today, during which he received his work shirt.  I love to see Zach with his friend Josh.  They are only a couple of months apart in age and have been buddies since they were in the primary classes at MRS.  They can't talk to each other and yet, you can feel their friendship when they are together.  It is a huge blessing. Attached is a photo I took today.  Josh had his eyes closed and Zach was doing his "Smile, cheeeeese" so I counted, "one, two, three, open your eyes!" and snapped this awesome picture.  You may notice that Josh is wearing headphones.  He is sensitive to the sounds around him.  The second picture is how the school represented  the crew as super men and wonder women.  Also, sorry about the type spacing changes.  I am not sure how to fix it.  :P

As Ever,
     Maria

Zach's story a little bit at a time.

A Summary of Sorts

We welcomed Zachary into our family on December 22, 1995.  Our third child, he was the spitting image of my dad, down to his lack of hair :) .  All of our children were baldies, but Zach had a chubby little man face.  He had a bit of wispy blond fuzz and blue eyes like his siblings and his daddy.  He was a 7lb 9 oz bundle of boy and a welcome addition to our family.
    We were living in Amherst Township at the time, in the mobile home park. Chris was in school and Monica, just shy of 2, was my little helper.  We lived a pretty simple life and Zach seemed to develop normally.  He smiled and crawled and walked and made eye contact.  He wasn't what I ever thought of as an unusually cranky or unhappy child.  I always thought we were pretty blessed not to have a great deal of sibling rivalry going on.  But as he neared his first birthday Zach didn't really talk.  It was a big deal when he said the word "banana" for the first time.  Pete wrote it on the calendar. 
     When Zach turned one, we invited our parents over to celebrate in our little mobile home.  It was a simple celebration shared with loved ones.  Pete's mom had passed away a little over a year before, having never met Zachary.  Little did we know that my mom would leave this earthy world just 4 days after Zach's birthday, which also happened to be the day after Christmas and the day before my 26th birthday.  
     It was a rough year emotionally.  I had grown very close to my mom when I married and moved out of the house.  We shared Sunday dinners and talked on the phone daily.  In fact, we were talking on the phone when she died.  
     I will always wonder if my radar was down due to my grief and if I would have noticed things sooner if I wasn't going through my own emotional pain.  I don't think life as the parent of a disabled child is ever free of wonder and guilt of some kind or other.  As it was, Zachary began to miss milestones between his first birthday and his second.  He still had a beautiful (and sometimes mischievous) smile.  He liked to be held and cuddled but he began to act as if he couldn't hear us.  He didn't turn at the sound of his name.  He was not gaining vocabulary.  He didn't call us by name.  
     I spoke to our family doctor about it and he said, "Oh, he's FINE.  I see the way he looks at you."  But he ordered a hearing test anyway (you have to love that about a D.O. - I know I do!), to rule out anything physical causing his delays.
    At that precise juncture our insurance changed.  We were forced to change doctors before a hearing test could be performed and it was like starting from square one.  We were already getting the feeling that some family members thought we weren't looking into Zachary's (by then obvious) delays.  It was hard to feel judged as a parent, a life calling I take very seriously. We were following a path on which trusted medical professionals were leading us even as they protested our concerns.  "Oh, the older kids are just talking FOR him" our new doctor said.  But I knew there was something wrong.  To be fair, in 1995 autism had not yet reached the epic proportions it has reached today and I am sure many doctors had never even seen a case.  In my opinion and from my interaction with families affected by autism (which are still only MY personal experiences) it seems that the mid 90s were when the autism onslaught really began... or things at least began to snowball.
   When we finally were able to convince the new doctor to order a hearing test it came back within normal range.  On to the next step... but what was the next step?

Success!  Thanks to Chris of course for some of the layout stuff.  :)  <3

Introductions are in order

Those of you who have been keeping up with me on Facebook know that I have been hoping to get Zach an iPad for his birthday/Christmas (don't worry, I will have little gifts for him to open on each date, I have a "Christmastime" birthday and I know what it is like).  Some of you expressed a desire to give directly rather than buying jewelry through the www.thepuzzlingpiece.com challenge.  It would take selling 60 pieces for them to reward us with an iPad.

While I was trying to find a way to link a "donate" or "give" button to my facebook, I discovered it is much cheaper/less fee intense to have a donate button linked to a blog.  Se here we are.  What a better way to share the joy and intricacies that make Zach who he is.

In just a few weeks Zach will be 17.  I am shaking my head as I write this.  It is so unbelievable how fast children grow up.  It has been an interesting ride.  For now let's just say that the lessons learned on this adventure with my son have not always been simple, easy, or joyous, but they have always been meaningful.  I often reflect upon my life with Zach and I think that perhaps there are lessons I need to learn that I would not learn any other way than by being blessed with Zach.

Without much more ado I am going to try to link a donate button... Let's see how it goes.  
Yours truly and gratefully, 
Maria