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.