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