Entitlement? Hell Yes!

Everyone wants the best for their children, and if your child is going to require a lifetime of care you most definitely want the very best possible.

Just because an individual has special needs doesn’t mean that they deserve any less when it comes to dignity, respect, and a comfortable, safe living environment.

When we were looking for placement for Zachary, the “powers that be” thought we were asking too much.  When we said no to homes on busy streets, with no fences, with four people in a room, and only one staff on at night you would have thought we were asking for a long-term stay at Club Med.

There are people who think the things I listed are “luxuries” and that we should not expect tax payer dollars to provide these things to my son and others.  They feel Zach and individuals like him should not be “Entitled” to anything beyond basic care.

How do we express the need for change?  What will it take for lawmakers and agencies to see the urgency for transportation, community activities,  more quality housing with trained staff where consumers are safe and lead a fulfilling life?

There is such a shortage of spots, especially safe and appropriate spots that it has become like the Hunger Games….who can get the best spot first?  May the odds be ever in your favor!

I implore those of you with adolescents that may be looking for alternative placements in the future to start writing politicians, and mental health agencies now.  We need to let the folks making these decisions know that we are not OK with substandard care, or worse yet no care and no help. We need to speak up on behalf of our loved ones about the importance of dignity, respect and quality of life.

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Twenty One

Twenty one:

The title of Adele’s second album in 2011

The number of gun salutes honoring a veteran, royalty or leader of a country

The age at which someone can legally purchase and drink alcohol in the U.S.

The key value and highest-winning point total of the popular casino game Blackjack

The atomic number of scandium

The number of years that my boy has been on this planet

Happy Birthday Zachary!

At 18 you were considered an adult but 21 makes real.  You are officially a man.

Born 3 minutes after arriving at the hospital and while your father parked the car, you entered the world at lightening speed and have been keeping us on our toes ever since.

Your unadulterated joy, innocence and zest for life have been such a blessing to us.  You remind us every day of how we should live life to the fullest and appreciate all of the gifts we have been given.

Today there will be no dark clouds, no sadness, no wallowing in the what if’s or why’s. It will be a day about birthdays and all the things that you enjoy; Friends, family, food and fun!

Like a Wrecking Ball

Lately I have been having a lot of conversations with friends about our experiences with moving Zach into a residential placement.  Now before I go any further I have to say I know that some of you are shaking your heads and saying your I nevers.  That is OK, my life experiences aren’t yours and vice versa.

It has been a little over five months since we moved Zach, and though this by no means makes me an expert, I am coming to some important realizations.

Before Zach moved I wrote blogs about how challenging our life was.  I wrote blogs about how autism and ring 22 syndrome affected me, my daughter, my husband.  I wrote about feeling imprisoned by autism and how pissed I was about not being able to lead a “typical” life because of autism and ring 22 syndrome.   I am not denying the challenges or the difficulties.  I will not be making a retraction of any of the stories I told.  But what I failed miserably at portraying was how all of this affected Zach.

It is funny how you can see things so much more clearly from the outside looking in.  A little extra sleep and time to yourself allows you to become much more introspective and lucid.

It all hit me like a wrecking ball the other day as I was talking with a friend who is currently in the process of looking for a just right spot for her son.  She asked how Zach was doing and if he was happy.

I have been answering this question for months now and the answer is always the same. “He is doing great, he seems very happy.”  In the beginning I think I had to convince myself that what I was saying was true.  I doubted my decision, I questioned my motives and felt selfish for what we had done.  But as time has gone on, I know without hesitation that he IS happy and he IS doing great.

As I described to her how he seemed much calmer and how he enjoys coming to visit but that he is always ready to go back, how he smiles when he sees the caregivers and runs to hug them I started to cry.  That is when it hit me…..All of this time I had felt so held back by autism and ring 22 syndrome when in reality we were also holding Zach back.

My fear of him eloping, my anxiety over taking him anywhere for fear I couldn’t handle him in public, my resentment, not of him but of the difficulties, the locks on the doors to keep him safe, were imprisoning him just as much as us.

I had selfishly thought that we were the only ones who could care for him and make him happy but much to our surprise he wanted and needed what so many other young men and women his age want and need…Independence, room to grow, autonomy.

I will always be there for my kids, I will always be there as an advocate and as a champion for their happiness and safety.  But I am beginning to realize that even though my son will need a lifetime of care, he wants to spread his wings and live his life to the fullest.

Yesterday we had a snow day.  I called out to the house to see how Zach was doing being snowed in.  Admittedly I feared that I would hear him crying and having a difficult time in the back ground or that they would tell me he was struggling.  Instead, I heard giggling and  happy sounds as he hung out with the rest of his roomies and caregivers.

Today was snow day number two.  My mother’s intuition told me for sure today was going to be difficult.  I called again and offered to come out for a visit and to bring lunch for everyone.  Imagine my surprise when I was told he was relaxing and watching a movie and that the whole house was going out to lunch later. They didn’t need me to swoop in and “rescue” them or him.

I guess sometimes momma doesn’t know best.  And I am OK with that.

Days like these I know we did the right thing……for all of us.

 

 

 

We got the Beat

Last weekend I took a road trip with three other women to meet a friend about four hours away.  We all grew up in a small town together and have known each other for over 40 years.

In 1982 we graduated high school; all seventy seven of us.  Growing up in such a tight knit community and in such a small school meant that we not only knew our classmates but most of the students a year or two above or below us.

Thirty four years ago we went in separate directions, to face the world and begin brand new adventures.  In all the years that have passed there have been marriages, children, careers, accomplishments and trials and tribulations.

I will admit, I was unsure how the weekend would go.  After all these years would it be awkward and uncomfortable?  We kept in touch through social media and knew of each others lives and families through what was posted on the internet.  Years ago we were thick as thieves and spent endless hours together but other than a couple of reunions we had not really spent any time all together in a group.

The trip was reminiscent of a late 80’s early 90’s movie ; The Big Chill, St. Elmo’s Fire come to mind.  A group of high school friends coming together, talking about old times, being called by my high school nickname, catching up on all the “gossip,”  cackling about Urban Dictionary definitions and listening to old albums while singing Air Supply at the top of our lungs. We quickly eased into those same roles as if it were a Saturday night slumber party from over thirty years ago.

Of course we weren’t the same, we were grown women in our 50’s with grown children (some of us with grandchildren).  We talked of weddings, and future plans, group homes and cancer battles, favorite recipes, kitchen remodels and decorating ideas.  No we weren’t those same Go Go’s loving, naive kids, we were much more…..we were amazing badass women who had done and continue to do some pretty amazing things.

The weekend came and went quickly and we went back to our lives. Back to work, and the daily grind, back to grand babies and the ones we love, back to facing challenges and back to being the badass women we are.

I am so grateful for that weekend and for all the badass women in my life!

 

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The “Junk Drawer” Brought Me To Tears

We all have them, the drawers we fill with miscellaneous crap.  At our house they are called “Junk Drawers” Most organized  kitchens have one junk drawer, at my house there are several.

We are getting ready to start our kitchen remodel so we have taken on the daunting task of cleaning out the kitchen cabinets.  I have found 500 kabob skewers, 6 jars of cumin and enough cinnamon to last me a lifetime.

You never realize how many memories a kitchen holds.  It truly is the heart of the home.  Tonight as I tackled one of the island junk drawers, (Emily’s drawer) before I knew it I was a puddle on the floor. I never expected that in that little drawer I would find little reminders of the last eighteen years.

Art pencils, craft supplies, and drawings bring back vivid memories of her at the kitchen table sketching or crafting a project for school.

There were packs of her favorite Tick and Dora pencils (she asked for those for Christmas in first grade the real name is Ticonderoga).

Sheet music, music staff stickers and hand warmers from her days in band.

My Pretty Pony coloring books, waterpark wristbands, key chains from family vacations, a letter to us about putting in a pool, a school ID from Junior High, a funny photo book she and a friend made, a nose pencil sharpener and so much more.

Eighteen years of memories in that one little drawer.  Time flies my friends,  time flies.

 

 

 

 

The Box

I carefully took the box from the closet and placed it upon the bed.  I removed the top and gazed into the cellophane window that had been hidden beneath.

It had been preserved for over 27 years in the airtight box and although the gown remained the same, life since wearing it had changed in many ways.

June 25, 1988 was on record as one of the hottest days that Jackson Michigan had ever seen.  The power went out at the reception venue, the cake began to melt during the ride over and the church was not air conditioned.  Thankfully I was blissfully unaware of all the wedding day challenges and was happily readying for my walk down the aisle.

In the early years we had no appreciation for how glorious life was.  Many nights were spent talking into the wee hours of the morning.  Sunday’s were spent in bed watching television, reading the newspaper and napping on and off.   We were in love and we were young and wild and free.

Life moved quickly, there were careers, children, autism and ring 22 syndrome, soccer games ,band competitions and all that comes along with parenting.  Sleepless nights, meltdowns, therapies and doctor appointments took place of date nights.  Exhaustion took over and as sleep became a rare commodity,  so did those long talks into the morning,  lazy Sundays and couple time.

Along the way we lost sight of the couple we used to be, instead becoming expert caregivers and a tag team that could rival the best in the WWE.  Through it all the kids remained our focus and we dedicated our lives to being the best parents we could be.  We may not have had time for romance or intimacy but we became stronger in spite of and because of our life experiences.

Our children are adults now, both with their own living arrangements.  We are now on our own,,,,we are older, in love, not so wild and strangely free.  Now we work on rebuilding ourselves as individuals, as husband and wife rather than co-parents and caregivers.  We will always have those roles, but now we need to regain our roles  as individuals and  our relationship as a couple.

As I put the lid back on the box and tucked it safely away in the closet, I reflected on our  life. Like the dress in the box it was a bit yellowed and worn but beautiful all the same.

 

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Don’t Hate Me Because I’m Beautiful

 

If you are a child of the 80’s you will remember the Pantene commercial featuring the beautiful model with her mega hair and the tag line “Don’t hate me because I am beautiful.”

I haven’t blogged much recently.  I have been leery of people feeling as if they could not relate to me any longer, of people feeling that I have nothing in common with them any longer and of people feeling like I did when I saw that commercial;  “What a hypocrite”

I would be lying if I said I wasn’t enjoying the sleep, the time with my husband, the ability to run to the grocery store on a moment’s notice, having control of what television shows I watch and many other simple pleasures. It sounds awesome doesn’t it?  BUT The evolution from full-time parent and caregiver to “empty nester” is not as glamorous as it may seem.  It is a path wrought with doubt, worry, and a lot of time for introspective thoughts.

  • That whole saying about “You don’t know what you have until it’s gone”  is pretty accurate.  Although my life as a mom and caregiver was exhausting,  I miss having my kids here.  When they are not feeling well or are sad I want them curled up in my bed watching TV while I bring them chicken soup and ginger ale.  I miss seeing my girl on the couch watching episodes of The Food Network and the look on my boy’s face when something tickles his fancy.  I thought I couldn’t wait for peace and quiet now I long for the sound of a full house.
  • I made a lot of excuses….”I don’t have time to exercise,”  “I don’t have time to cook,”  “I don’t have time to dedicate to my relationships.”   So far I have all the time in the world and I still don’t always make those (and other items) a priority.
  • I put off happiness.  “When I lose weight I will be happy,”  “When I have enough money I will be happy,” “When I have more time I will be happy.”  Another quote rings true “If you are not happy in the here and now, you never will be”
  • I blamed Autism and Ring 22 syndrome for a lot of things….they can no longer be my scapegoat.  #noexcuses
  • Being an empty nester can be lonely.  Having a husband who travels frequently equals a lot of alone time.  I am still learning to be Ok just being by myself.
  • Reinventing yourself is not easy.  After children I was like jello poured into a mold. Now that my role has been redefined, I don’t want to just sit “wiggling on the plate”

I am not complaining nor do I have regrets, I  just wanted you to know why I have been quiet in regards to writing.  I am a work in progress, I am on a path of discovery.  What direction do I head into as a mother, wife, friend, individual and writer?  What does life have in store for me?

 

 

 

 

 

A Letter to my BFF on her Birthday!

Dear Jewelry,

Over forty years ago I started fourth grade at a new school.  My twelfth school to be exact.  I had moved in with my grandparents after a very tumultuous few years of being bounced back and forth between my parents. I did not know a soul, I had a lot of baggage and was living in survival mode.

My fifty year old mind does not allow me to remember every detail of our meeting, but bits and pieces of talking with you in Mrs. Collette’s coat area about a boy seems to ring a bell.  I could write a novel about our adventures but suffice it to say we have run the gamute of emotions over a lifetime.  From dances, to break-ups, sleep-overs to seances, weddings to babies, we have done it all.

We truly have grown up together but have never grown apart.  I can go months without seeing you but as soon as we are together again we don’t skip a beat.  Our friendship is something I value more than you can ever know.

Sometimes I feel selfish.  You have been there with a listening ear and shoulder throughout our friendship and although I know you have to cringe from time to time when you see my number pop up on your phone, you never hesitate to answer and chat. You can read me like a book and always make a point to contact me in some way when you know I am struggling.

We have been busy raising our families but now that we will be empty nesters I look forward to spending lots of time together in our “Golden Years”  Let’s hope teens aren’t saying “You got an eye problem old lady” when they talk to us 😉

Just wanted you to know that you are loved and appreciated on your birthday and every day!

XOXOXOXOXOXOXOXO

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To My Husband on His Birthday

Today you are 50!  Unlike me, you face 50 with grace and confidence. No tears for you at this geriatric milestone.

Do you realize we have basically grown up together? Destiny definitely had a hand in our relationship!  When my brother and I moved in with our grandparents at the ripe old ages of 8 and 9 you and your sisters were our first friends in the neighborhood.  Of course I did not think much about you at that stage of the game, I mean you had cooties back then!

Fast forward to our teen years and suddenly you were pretty cute. We have been together ever since.  Life sure was easy then…..hanging out with friends, going to high school dances and walking around the block to see each other several times a week.

After high school we went our separate ways to college.  No one thought we would make it, surely we would both meet other people and the “puppy love” of high school would be forgotten. We proved them wrong, after college came marriage and then five years later came the “baby in the baby carriage,”

We were young and in love and we were invincible!

Two years later came our beautiful boy, we were the perfect little family living in suburbia!  As it became apparent that our little guy was going to face some difficulties in life, our “perfect little world” started to unravel. Many men would have headed for the hills!  And even though there have been days that we hang by a thread, through it all you face it it with courage, confidence, and determination.

I am sure on more than one occasion, folks have doubted that our marriage could withstand having a child with such significant needs. Hell, who are we kidding, we have questioned it ourselves! But here we are thirty five years later with twenty seven years of marriage under our belt and two beautiful children. It isn’t always pretty, but we continue to face tough times together.

We are OLDER and in love and INVINCIBLE!

Our children are so fortunate to have such an amazing and dedicated father.  I watch in awe of your gentle, patient nature and am so thankful and appreciative that you have always put family first.  I  can only wish that one day Emily  will meet a man as smart and kind, and down to earth as you.  My hope is that some day our grandchildren will have the type of father that she had growing up.

Today we celebrate you and all you have done for our family!  Happy Happy 50th XOXOXOXOXOXOXOXO

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Will they know……….

leap

As she drove the enrollment packet to the new school district she could feel the tears welling up in her eyes.  Her son had attended the same school district since he was three.  It was always nice to have him close by with people who knew and loved him.  He was 20 now and was well known in the district.  The new school system had already said they could not provide services for him, he would be sent to the center program on a bus.

So many changes; a new home, new school, a new community.

The tears that had begun to fill her eyes now trickled down her cheek. Her mind raced, she was overwhelmed.  She couldn’t stop thinking about the new people that would be a part of his life…How could she possibly tell them every minute detail of her very complicated and beautiful boy.  The focus was always on the obvious, his Ring 22 syndrome, his autism, his behaviors, all of the things he couldn’t do. That was what was most important to most folks, his inabilities…..As his mother she wanted to make sure no one lost focus of the things that her son could do, his abilities and the things that brought him joy.

Would they know?

When he leans his forehead in he wants you to kiss it

That he comes down the stairs and goes back up looking back to make sure you are following him

He loves Swedish Fish, Twizzlers and Whole Foods Tuna Salad

When he gets in your personal space and looks you in the eye it means he likes you and is engaging with you

When he is upset or sad car rides and music make all the difference

He loves Katy Perry, Taylor Swift, Pink, Eminem and also Barney, Blue’s Clues, and Arthur the Aardvark

He loves books

When he flips over on his left side and faces the wall, he is ready to nod off to sleep

He loves to splash his hands in the pool water……He loves water

When he sits at the table he wants a snack

When he brings you the keys or his shoes he wants to ride in the car

If he likes you his smile will light up the minute he sees you

He’s smart…when he is motivated, he can do things you never thought possible

That IQ score on the report is not a true reflection of his abilities

Would they know??

He is loved…so much

That this is the most difficult and painful thing his parents have ever done

That his parents would always be active and involved…. that he would always be an integral part of their lives

How could she possible share everything she needed them to know? These were the things that woke her at night, the thoughts that brought her to tears.

She could only take a leap of faith and hope with all her heart that this was in the very best interest of her son and her family.

But she was afraid of heights….she might need a little push.