“The Breakfast Club”

I am not what you would call a religious person.  I strongly believe that living a life of service and showing others respect and kindness is just as important as attending church every Sunday.  I do believe in destiny, in karma and in things happening for a reason.

As I have gotten older and I look back on my life there are several instances where I can see exactly how and why things happened they way they did.  The days in isolation made no sense at the time but once all of the events fell into place, it all made perfect sense.

One of the major “AHA” moments I always think about happened early in our marriage.

Before we had children of our own and when Mike and I were first married, he was working and traveling extensively and I was substitute teaching.  My degree was in general education and my specialty was science and biology.  I had NO experience with children with special needs, and no clue about autism, cognitive impairments or anything about the special education system.

One morning I was called to be a guest teacher at a school in a neighboring district.  I had no idea what I had agreed to do and I did not even know that it was a school for special needs children.  I was placed in a classroom that had SXI (Severely Multiply Impaired) young adults (I am embarrassed now to say this, but  I shudder to think of the horror on my face that day as I walked in and saw the students that I would be working with).  Thankfully a paraprofessional came over and picked my jaw up from the floor and explained to me what I would be doing that day.  I remember looking at the adults working with the students thinking   “I could never do this”.

Well, I did make it through that day and I even worked for their  SCAMP program  (a special needs day camp) for a few summers.  I found out that not only could I do it, I discovered that I found Joy in doing it!

I know now that was life’s way of preparing me for what was going to come our way.  It was a gentle nudge saying “You can do this”  “You will do this”.  It has always been a memory that I  reflect on to help me be a better parent, educator and advocate.

There have been other moments; moments of discovery and thankfulness that somehow, someway I was put in the right place at the right time.

One of my most recent “AHA” moments has involved a small writing group that I am a part of.  I have to say the stars aligned with this group.  We are our own little melting pot.  We come from various backgrounds and various parts of the world. We have different religious views and a wide variety of different lifestyles, but we always have respect for one another.  We might not always agree, however we value each and every opinion.

I am involved in several groups and I enjoy each and every one of them….there is just something extra special about this one.  I like to call it “The Breakfast Club.”  Each morning I am greeted by funny banter between some of the members that live on the other side of the world and then those of us in the US have our go at it in the late after noon and evening.  If there is ever a time when I am up in the night with Zach (and there are many) I can always count on one of the “Breakfast Club” members to be there to chat with me…usually because they are having the same sleep deprivation issues as I am.

If I need to vent, get an opinion or get a good laugh this is the fist place I go.

The Breakfast Club and my other online groups and online friends have definitely been a blessing.  There are not many things I thank Autism and Ring 22 for but this is one of them.  It has put me in touch with some of the most amazing people I will probably never meet but that are there for me at a moment’s notice.

So to the “Breakfast Club” and all of my other online groups and online friends…. Thank you SO much for being such a source of support and encouragement.  You are always my silver lining and bright side to any kind of day!

XO                   keep-calm-and-love-the-breakfast-club

Swallowing the Bitter Pill Part 3: It’s all about the Quality!

I am a sucker for a happy ending.  I am a dreamer, a hopeless romantic and forever champion of the underdog. I wish this third installment of my Bitter Pill Trilogy was a happy bubbly post about us finding the perfect home for Zach.  I wish I could tell you we found exactly what we wanted in the spot we wanted.  I wish I was telling you about how excited and happy I am about his new adventures ahead but I can’t…at least not yet.

Mike and I were clueless about the world of adult transition.  We had no idea what would be involved when we embarked on this adventure.  Needless to say we are learning a lot and we are learning that embarking on this journey means donning your battle gear and preparing for yet another fight for what is right.

When I last left you I was describing our first visit to a licensed group home. First a couple of definitions: In our area when I talk about group home I am referring to a home that is run by an agency and has strict rules and regulations that must be (at least you pray they are) followed. When I discuss a personal residence I am talking about a home that usually owned by parents (they are the landlords) and typically an agency staffs the home 24/7.

I want to make it clear that we do like the social worker that handles Zach’s case.  We know she is the mouthpiece and messenger and hates constantly giving us bad news.  That being said, I can only hope and trust that she is advocating and fighting for Zach and not trying to pressure us into taking a slot that is not appropriate.

After the initial group home referral we were ecstatic to get a placement call about a home right in our community and only about five minutes from my work.  The home was in need of two new roommates and was conveniently located right across the street from a special education teacher who still works with Zach on occasion.  We waited and waited to be able to visit and were told that the main resident was experiencing some difficulties and that we would need to hold off.  We were in no hurry so we waited…..and waited…..and waited.  Something seemed awry, we were not being told any information. Then at one of the meetings, our caseworker discussed that our agency might not provide the 24 hour care Zach would need at the personal residence due to budget cuts but she would get back to me with an answer.  Guess what?…..We are still waiting for those answers.

While waiting for answers, two new referrals come in.  Good news I am told, they are in C-Town.  My interest is peaked but quickly wanes as I am told that house number one has five elderly men in wheelchairs and he would be the sixth resident, AND he would have to share a bedroom.  I looked at the caseworker and said “OK when do we need to get a lawyer?”  “I want to look at personal residences or better yet I want us to start our own place.”  She told me that a lawyer would not help,  they had many open spots in licensed group homes where he would be taken care of and safe. She said they had “spots that needed to be filled because otherwise it cost too much money.”  I stared at her blankly and said “So in other words, no one cares about Zach’s quality of life, they just care about filling their beds!”  She looked sadly and said “Don’t say that, it makes me feel bad.”  I told her that I knew it was not her personally making these decisions…that she was just the messenger but I also said “To even suggest that our twenty year old  very active son be placed with five elderly men in wheelchairs and share a bedroom speaks volumes to the fact that his quality of life is not first on the priority list.”

The second home was also in C-town.  In fact, this home was only ten minutes from our house.  Again, this home had six residents they were several years older than Zach but very active.  The deal breaker is that he would have to share a bedroom. Our caseworker told us she would inquire about the possibility of Zach having his own room :this is a NON-NEGOTIABLE.  Zach can not share a room, it would not be fair to him or to the other resident.  Zach is up frequently, and I have no doubt he would crawl in bed or worse yet jump into his room mates bed. Not happening!   Long story short we were told that he would have to share a room or the home was a no go……….it’s a no go.

Bottom line is Zach’s quality of life is important.  It is imperative, and I will not sacrifice his quality of life in hopes to make ours better.  I am disheartened that anyone would ask us to even consider for one second anything but the best for our son.  We are lucky that we do not HAVE to make these tough decisions, other parents are not afforded the choice either because they can not cope, their child has become dangerous or because they have become ill or passed away.  We have choices and we have options.

I am tired; I am spent emotionally.  There have been a lot of tears and frustration and most days  I want to throw in the towel (actually I want to tell the agency where they can shove the towel 😉   But I know that I have to keep up the fight. The right place, the perfect place for Zach is out there.  I have to believe that.

So, sadly this is not the happy ending I had hoped to share. I guess that just means my story isn’t over. Don’t you fret, I have some irons in the fire,and some tricks up my sleeve.  This fat lady ain’t sung yet!   There will be a part 4 and it will be called “Doing the Happy Dance” instead of Swallowing the Bitter Pill.

I’m not sure when I will be able to write part 4, it seems the system is broken and we need to help give it some CPR.  So until we are presented with a home that provides all the things Zach needs to have not only a house but a home that gives him a quality life I guess we are going to keep up the good fight.  My boy deserves nothing less.

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Mirror Mirror on The Wall: Who the hell is that?

I think I am in the middle of an identity crisis.  At 51 years old, after 2 children,  27 years of marriage, and years of work I  find myself frequently asking “Who am I?”  Not in a “Still Alice” kind of way; my memory is not what it used to be but I am still mostly on the ball.  “Who am I?” in the sense of where do I fit in at this stage of my life?

It is easy to tell yourself you won’t change who you are when you get married , have children, and begin to age, but try as you might,  you will change.  Your body changes, your priorities change and your life focus changes.  You no longer focus on yourself, you have a family to take care of and nurture. “Me time” becomes a thing of the past, sleep becomes a luxury and you find yourself running from one event to the next.   Before you know it your “go to” outfit goes from heels and skirts to yoga pants and an oversized sweatshirt.  Your idea of a wild night is coming home, putting on said “go to” outfit, getting take out and watching mindless television while you fall asleep on the couch.  Your beauty regimen  morphs from leisurely baths in the spa tub with a mud mask to a quick “P.T.A” bath with a washcloth and a bar of Irish Spring whilst standing at the sink.

I have probably opened the floodgates to rude remarks and snide comments. If you are one of those women who can keep it all together:  The house, the marriage, the kids, the job AND still look like a million bucks, PROPS to you!  You rock.  If you are one of those women please stop reading this and grab your latest issue of Cosmopolitan.  For those of you who are in your sweats nodding your head in agreement then please read on.

I can’t pinpoint exactly when it happened:  when the wrinkles started appearing, when appendages that were once perky took a downward turn, when a good laugh better be accompanied by crossed legs or when those stray grays started springing up. It seemed as if I woke up young and spry one day and the next I looked in the mirror and thought “Who the hell are you?”  “Where is Michelle, and who is this old lady?”

I  have also been thinking about things I used to do: hobbies, activities, interests. For so long I was fully involved in my children’s activities, that those had become my entertainment, and interest.  Now that those are over the question is “Now What?”   As I approach the empty nester phase I have realized I need to reinvent myself.  I need to find things that fulfill me and make me feel vibrant. Seriously, even though  I love Netflix and sweats, I do not foresee this as a viable route to self fulfillment.  My first attempt at reinvention is writing.  I have been dabbling in the blogosphere and now want to work on developing my skills.  Writing, yes that is a great new hobby to begin my “golden years”.

I am NOT complaining, I LOVE my family and I have loved every minute of raising them (OK maybe not every minute…but if you were to picture a balance scale the good would outweigh the bad by far).  Honestly, not to pat myself on the back but raising two children into adulthood (one with significant special needs), working full-time, and having 27 years of marriage under my belt is something to be proud of. Yeah matter of fact it makes me pretty special. Actually I think I could be considered a badass!  I know my job as a mother will never end, but it now takes on a different job description.

The marriage is going to need a bit of an overhaul too.  Before life got messy and busy there was only us.  We were young and in love and couldn’t get enough of each other.  Now we are older, exhausted and even though there is love, by the time 10 PM comes, my side of the bed is about the sexiest thing around town.  We are not used to it being just us any longer, we have not had the opportunity for spontaneity.  Life with autism has put the kibosh on intimacy and romance and living as caregivers in shifts has become the new norm.  This part of being an empty nester scares me most.  What if when it is just us again and we can spend time together we don’t even like each other any more?

In the show Parenthood, the matriarch Millie talks about this stage in life being “The Third Act” and she describes what she wants in life as an older couple whose kids are grown.  I am not sure what is in store for my “Third Act”  I still have many lines to memorize and rehearsals to run before the “show” but whatever it is I hope to get a standing ovation for my performance!

older        empty nester

Swallowing the Bitter Pill Part 2: I’m gonna need a bigger glass of water to get this one down!

All states have different regulations regarding the services provided to individuals with developmental disabilities. There are differences not only between states but there are also differences within the counties of each state.  I have spoken with online friends from other states that can get absolutely nothing in regards to support for their children while others are on waiting lists that span for years.  Most states end educational/school based services for children at the age of 18 or 21.  We are lucky to live in a state that provides educational services from birth to age 26 (at least for now).

When Zach was young we were unable to get any type of services because of our household income.  We struggled for many years with no support and paid handsomely for sitters when we could get them.  After a several year battle we were finally able to get services through a waiver program that was based on Zach’s significant needs rather than our income.  Those services were life-changing.  We were able to enjoy a quality of life with Emily and attend her events. It also afforded us time as a couple which in turn preserved our marriage.  It wasn’t always easy, we had decided to be “Employer of Record” meaning we would be the ones interviewing and hiring the individuals that would be in our home and work with Zach.  Beth has been our Godsend, our angel and our rock but she couldn’t/can’t do it all.  In efforts to find others to help use the hours we were given (or be at risk for losing them) we had to find additional help.  In our search we found a few other great gals that have helped us on and off through the years,  we found some mediocre helpers that were OK but nothing to write home about, and thankfully only two that we had to let go because of irreconcilable differences.  When I say irreconcilable differences what I really mean is that I could not reconcile myself to let them continue to work with Zach because they sucked!

We enjoyed the children’s waiver services for several years then when he approached his 18th birthday we were told that the day he turned 18 his services would diminish to less than half of what he had been receiving.  It made no sense, he was older, we were older and although some things were easier, others were much more difficult.

Once we wrapped our heads around the idea that Zach could never live independently,  I always envisioned what the “ideal” living situation would be for him.  It would be a home that we purchased nearby in the community, the home would have all the amenities we considered important: it would be off the beaten path, not near busy roads, not near a pond or lake,  have a nice fenced in backyard, he would have his own room and  he would live in the home with roommates that we helped choose.  The agency we work with would staff the home 24/7 and we would play an active role in all of it.   I met with other families who had started their own homes and knew that is what I wanted for our son.

Fast forward to 2015:  Massive budget cuts have hit our agency and pay rates that we are allowed to pay caregivers have steadily decreased and housing budgets have been gravely affected as well.  As of now the agency is not staffing any new personal residences.  We are only allowed to look at existing residences and licensed homes.  Murphy’s Law strikes again…if only we had been in the market to start a personal residence even a year ago we could have done so. My dream of starting a home of our own for Zach was not in the cards.

We agreed to put Zach on the referral list.  Being on this list would allow us to visit personal residences and licensed homes (with NO commitment) so that we could see what our options were.  We were also told we would attend “meet and greets”  I liken these to a Matchdotcom for individuals with special needs.  Parents and guardians gather together to see if they can find a “match” for their son or daughter.  I laughed to myself thinking about what we would include in Zach’s profile:  Hi, My name is Zachary.  I am a 20 year old man looking for someone to room with.  I enjoy travel, being a foodie, movies and music: it would soon become apparent that “travel” meant endless car rides that did not necessarily have a particular destination in mind, that being a “foodie” involved PICA behaviors, stealing others food and raiding the pantry and fridge at every opportunity.  It would also become apparent that the movies were not Oscar’s top pics but the same Barney, Blue’s Clues and Arthur videos that have been watched for the last 17 years.  I could with good conscience mention his music interests…Up to date pop music lover and You Tube connoisseur.

Our first referral came in December; a licensed home with three residents, a well respected agency providing the care and he would have his own bedroom.  The downfalls were that it was a good thirty minutes from home and he would not be able to attend his same school and if we liked it we would need to move him out at the beginning of the New Year.

We agreed to go see it because we needed a reference point as to what was available to us.  The visit was scheduled for December 23…two days before Christmas.  As Mike and I took the trek out to the home I could feel my anxiety rising and my stress level building.  I kept telling myself  “It’s just to look, no commitment.”  I did not want to break down in tears in front of the home manager or residents…I had to get through this visit then I could “lose it” on the way home.

The home was off the beaten path in a rural setting.  We were concerned with the lack of activities available in the area and the amount of time it would take to get to those activities but we headed up to the door.  We were greeted by a young adult with Down Syndrome and the home manager.  The other resident–a man that sounded similar to Zach but in his 50’s was at a day program.  We were given a tour of the home.  It was a lovely open ranch with a nice yard and his own room.  Several of our “must-haves” were there.  We had been told that the local district would provide his school based services but found out quickly that that indeed that would not be the case…..we would be moving him 30 minutes away only to be bussed back to a center program in our area approx. 4o minutes away.  The visit was no longer than 20 minutes then we were on our way.

Of course as predicted as soon as we pulled out of the driveway the tears started flowing.  Mike and I liked the home but there were definite hesitations and concerns with some of the logistics.  We had questions but decided to enjoy our holidays and then discuss if we wanted additional visits and information on the home…we couldn’t possibly base our son’s living arrangements and life on one twenty minute visit.

After the holidays we were ready to investigate a bit more only to find out that an emergency placement had taken precedent and that the spot was no longer available.  Back to square one!  Admittedly I was a bit relieved, I really wanted something closer to home and ideally where he could attend his school.

Little did we know that that home was top notch compared to what we would be referred to next…..

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Next:  Swallowing the Bitter Pill Part 3:  It’s all about the Quality!