The Aspects of a Tragedy

I didn’t hear about the Stapleton family’s tragedy until this morning.  Then it was bits and pieces, no complete story.  I finally found Kellie’s blog and read the last couple entries.  Then I sought out a news report.

First, I want to say that I in NO WAY condone or understand what happened.  I do not walk in Kellie’s shoes, I do not fight her fights, live her life.  I do know there is always a choice and always help.  The help is often hard to find and when you do it is still difficult to get.  I also know that all life is valuable and that those with disabilities have just as much right to live and be happy as the rest of the world.  I could even argue that they have more right because they often fight harder, have bigger hurdles and are not treated as ‘real’ members of society.  Kellie’s choice was wrong.

But, I also understand the pain, fear, hopelessness and helplessness of feeling like you are not reaching your child.  That what you are doing to help is a waste of time and money and not helping at all.  I understand the fear of your child’s behavior, of not knowing when the next explosion will happen, what will trigger it or how significant it will be.

As Autism families, I think we sometimes feel broken.  We are not the broken ones though.  We are the ones striving to be whole and complete.  We do whatever, whenever to help our children.  We look for ways to include them, make them feel safe in a world that is often too overwhelming.  WE are not broken and neither are our children.  It is society, education, insurance and government that are broken. 

We fight to have our children included.  We fight to not respond to the stares, snickers or comments when we are in public.  We fight for inclusion.  We fight for access to ASD classrooms and services.  We fight for paras and appropriate education.  We fight for teachers to see our children’s strengths and help build them, not just look at the deficits.  We fight for speech therapy, occupational therapy, feeding therapy, behavior therapy, ABA, social skills therapy, social skills groups.  We fight for medical coverage for co-existing diagnoses.  We fight for laws and equality.  We fight for adult programs to support our children, who will grow up.

All this fighting is hard.  It is emotionally, physically and financially draining.  It leaves us feeling battered and bruised.  It leaves us feeling stressed.  It leaves our families feeling stressed.  It leaves our spouses stressed.  It often leaves our spouses and other children feeling left out or neglected.  It leaves us feeling guilty.  At the end of the day it leaves us feeling hopeless, helpless and defeated.

Don’t get me wrong, there are good, even great magical moments.  Small goals or milestones being met, new skills achieved, a day with no call from the teacher or school, a play date that lasted the full planned time.  There are even days or weeks where things seem ‘normal.’  Days when you can almost forget the battles you fight non-stop.  But it all cycles back around and the ever changing ebb and flow that is Autism shows its face again.

While we will all be quick to join one side of this controversy, I propose we do not judge this mom, this family, this situation, but that we unite and seek change.  Regardless of our stand on this tragedy, I think we can all agree that we need to make society, schools, insurance companies and the government aware of what we do, how hard we fight, every day.  We need them to be aware of hard it is and how little help there is.  We need to improve the system.

A single bad day does not drive a mom to think, let alone act on, the unthinkable.  A bad week or even year does not push us into that dark of a hole.  But a lifetime of fighting, climbing, pushing and begging that all goes unanswered does.  I have been there, in that deep dark hole, wondering how we were going to get out, how we were going to get better and move on.  It was not easy, it didn’t happen quickly, but it did happen.  It doesn’t stay sunny and bright either.  Occasionally we fall back into a hole and have to climb back out.

As you choose your ‘side’ and make your comments, either to friends, family, co-workers or on facebook, twitter and in blogs, please remember that while this mom made an unforgivable choice, the system failed Issy and her mom.

hindsight

The Brick has been out of sorts the last two weeks.  At first we blamed it on the upcoming full moon.  He seems to respond to it the three to five days beforehand.  Next, we blamed it on some schedule changes and the Teen’s back to school schedule changing since he decided to join rowing crew.  After that, we thought it may be my father-in law’s (FIL) medical condition (He was diagnosed about 3 months ago Acute Myelogenous Leukemia.  It is an incurable form of Leukemia.  He has not been responding well to the chemo therapy treatment to slow/manage the process.)   Then last night Hubs asks when we last had the Brick’s med levels done.

A-HA!!!!!

The Brick seems to go through a pattern with one of his meds.  He will take dose A for about a year, then his levels get too high so the doc backs off the dose.  Then, about six months later he will start to get agitated and combative, more in the evenings but during the days as well.  Guess what?  It has been about 6 months since the med dosage was decreased.  I will call tomorrow and request labs so we can have the results for our visit after Labor Day.

The last two weeks have been really rough; I am very relieved that we think we know what the issue is.  We hope.  But there may be more to come.

This morning we told him, we had already told the Teen, that his grandfather has decided to stop chemo therapy.  It is not managing the Leukemia and he has some negative side effects.  We knew this would come, we hoped it would be further in the future.  We live close (about 45 minutes away) and see him and his wife often.  We know this will have an effect on the Brick.  My father passed away just over a year ago after a relatively long period on Hospice.  This is not new to us but seems so unfair.  Our boys just lost one grandfather that they were very close to and now they are losing the other.  We do not know how long we have.

We had plans for brunch next weekend, but my FIL was feeling pretty good this weekend and my sister in law and her daughter are in town, so we went over this morning instead.  It was a nice meal and time together.  We spent a little time at the yacht club pool after we ate, so the kids could swim.  There were two other families there.  All in all things went well, but the Brick was ‘off’ and confrontational with his brother and me.  I know the Brick doesn’t always have the mental health/emotional vocabulary to express himself well and that he will often ‘act out’ when dealing with anxiety, unfamiliar emotions and stress, so I gave him a little more slack today than usual.  He was riding home with Hubs and I was taking the Teen so we could run some errands.  I kissed him bye, said I love you and sent him off.  One of the other moms there comments, “We love them when they leave.” And she chuckled.   It struck me so strongly that I was speechless.  I quickly gathered our things and the Teen and left.  In hindsight I wish I had thought to say

“I always love him.  It’s his grandfather dying and his Autism that I dislike.”

Society and dads today–a sad state

I was in the mall the other day and walked past one of the bath and body, candle stores.  As I approached there was a little girl, maybe 4 years old, standing in the front of the store.  She was turning in circles, on the edge of tears.  Before I got to her a gentleman in his 30’s approached and asked if she was lost.  She replied “mommy?” and started crying.  He said “Come with me sweetie, we’ll go to the information booth and they can find your mommy.  See, it’s right there.” as he pointed over the glass rail to the lower level.  The info booth was directly below us on the first floor, you could see it from where we stood. 

As I looked around every woman within ear shot had converged on this store front and was questioning this man’s motives in whispers to each other.  I too hesitated to walk off.  I walked into the bath/body store and asked an employee if they had a customer with a little girl in a bright blue tank top, about 4 years old.  A dad approached and said “Where is she?”  I explained the gentleman was taking her to the information booth just below us.  The dad left the store and caught up with the other gentleman before he reached the escalator.  I do not know what was said or happened at that point as I walked away.

The whole event got me thinking.  Why were we (all the moms and women) so concerned over this gentleman helping this little girl?  Women came from everywhere as he walked her toward the escalator; there were at least 6-8 women in addition to me.  The mall is open and you could see the escalator and the information booth.  Why did we all assume this man, probably a father himself, was a child predator?  If a woman had approached the little girl and offered to walk her down the escalator, would we have stayed and watched?  Would we have questioned her motives?  Would anyone have given it a second thought?  I know my husband would have helped the little girl as well and is sickens me to think others might believe him to be a child predator. 

I wonder what the girl’s dad said to the gentleman, what he thought.  Did he question the man’s motives as well?  Did he even give it a thought?  Or did they have some sort of ‘understanding?’  What has our world come to that we cannot even trust a man to walk a lost child to an information booth in the mall, while remaining in full view?

I fully understand ‘stranger danger’ and that we live in a world full of people who do prey on children, but we also live in a world full of kind, good, caring people who do the right thing.  I feel badly that I questioned this man’s motives and I apologize to him and all the other good guys out there who would have helped as well.  But, unfortunately, I will question the next man too……

Brick Stix

First—I am not receiving any compensation for this post.  I am only sharing the Brick’s and my opinion on this (amazingly fabulous) product.

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 I posted on facebook a couple weeks ago that we had ordered some Brick Stix.  If you are not familiar with Brick Stix go to www.brickstix.com for more info.  They are reusable stickers to accent Legos (they remind me of Colorforms—did I date myself?).  There are clothing items, town and home stickers, etc.  Even a fun Zombie pack!   I ordered the Special Forces sticker pack, the Town sticker pack, the Home Cling pack and the storage book. 

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We played with them and the Brick built the kitchen scene using both stickers and clings.  Here are his comments.

“They are awesome.”

“I like that they don’t stick to your fingers but stick to the Legos.’

“They make Legos more fun.  I recommend them for anyone who likes Legos.”

“Out of five stars, I give them 6!”

His only complaint was that the clings don’t stick to rounded bricks.  I reminded him that the website said that and that the stickers would stick to rounded bricks and he moved on quickly.

 

In the picture you can see many of the clings.  Starting on the far left you can see a refrigerator cling, a window and cell phone, behind the bread is my mini-me and she is wearing a sticker shirt.  Behind Daddy Brick (in the chef hat) you can see a cling for a microwave and on the right you can see a canister set and the blender.  There are also cookies, a sub sandwich, and eating utensils but they are on horizontal surfaces so you can’t see them in the picture.

 

They really do peel and stick well and when you remove them to reapply to a different brick they keep their ‘stick.’  I recommend the book, especially for smaller fingers and anyone who may have fine motor issues.  Trying to get the stickers to line up to store on their original sheet is challenging.  The only recommendation I have is to have some of the clothing items with ‘flesh tone,’ not just ‘mini-fig yellow,’ necklines.  With so many mini-figs being made not in Lego yellow it would be a nice addition. 

As a mom I also give these 5 stars.  They fill in some missing pieces when the Brick tries to built a scene and significantly add to his creativity as he builds.  They are an amazing value for the cost.  We will definitely be purchasing more!

In good times and in bad…..

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Hubs and I were lying in bed last night discussing our anniversary and how, for the second year, we just kind of skipped it.  I was reiterating that it was really no big deal.    (In case you missed a facebook post or are new to the page here is why.  Our anniversary is June 9.  A year ago my father passed away on June 6 and his service was on the 9th.  This year as we remembered my dad’s passing, my husband’s father was diagnosed with Acute Myeloid Leukemia.  Celebrating took a backseat.)

“If I need a ‘special day’ to feel loved by you, then we are in trouble and wouldn’t be having a ‘special day’ at all.  I think we do a really good job of letting each other know we love the other every day of the year.”  I joked.

He starts to laugh and says “OK, since we express our love for each so other so well 365 days, next year we should go in opposite directions and do something for ourselves.  If we take care of ourselves we can be better for the kids and each other.”

“Nice try, but I think we do a pretty good job of getting ‘me’ time throughout the year as well.  I like spending our anniversary together, even if you power wash the deck and I clean the house and do laundry.”

We laughed a bit more, said ‘I love you’ a few more times and settled in to sleep.

Maintaining a quality relationship with your spouse is hard enough after 17 years of marriage.  Like many couples, we fall into ruts.  We take each other for granted.  We lose the appreciation we once had for the small things.  Add in a child with special needs (Autism in our case) and it becomes even more difficult.  After a day of therapies and tantrums, intimacy is often the last thing on our minds.  When we crawl in bed sleep is all we long for.

I adore my husband.  He is my best friend and an amazing man.  He is kind, compassionate, affectionate, genuine, funny, dedicated, honest, loyal and, in my opinion, pretty sexy.  He is a patient father.  He spends time with the boys.  He is has been a scout leader for eight years.  He helps the boys become the men we want them to be, the men we know they can become.  I know he feels the same about me.  But that doesn’t make it easy.

The hubs and I have made an effort, we actually have to think about it and remind ourselves, to make time for ‘us.’  Sometimes we go out for lunch or dinner; sometimes we steal a few moments in the middle of the day, sometimes we are lucky enough to get a weekend.  These small encounters allow us to rekindle our relationship and enjoy each other the way we used to.

We also take time for ourselves.  Again, small things; I may get a massage, he may go to the shooting range, coffee or lunch with a friend or just time alone to unwind, going to the gym or taking a yoga class.

It is not easy to find time for ‘me’ or ‘us.’  But—we have discovered that if we take care of ourselves, our personal needs for time away, time with friends, time to unwind and leave our hectic demanding life behind for a few moments, we are better for each other.  When we are better together, our marriage is better and our relationship grows.  When our marriage is better we are better parents.

Take a few moments for yourself today (even if you have to hide in the closet or bathroom—I’ve been there too).  Do not feel guilty or selfish in doing something for yourself.  You deserve it, your spouse deserves it, and your kids deserve it.  You will be a better person overall.

The day (OK , the second day) the Earth stood still…..

June 6th, the day I will skip next year.

June is typically a good month for us and, until a year ago, the 6th had no meaning.  My mom’s birthday is the 4th, my husband’s step mom’s birthday is the 8th and our anniversary is the 9th.  Father’s Day is in June, the beginning of summer, the kids are out of school and summer vacation is still ‘new.’  Not a bad month, right?

Last year on June 6th, my father passed away.  It was a long process; we knew it was coming.  We were relieved, for my dad and his suffering, when it finally happened, but mourned greatly for our loss.  My dad was ready; he had been for a while.  It was no surprise, but was still very hard to deal with.

As we approached this anniversary I knew my mom’s birthday would be rough, but she handled it very well.  The day (today) arrived and things started as usual.  I went to yoga, dedicated my practice to my dad and had a great class.  I tried to contact my mom (who lives, literally, next door to us) and could not see any lights on.  I knew the day would be rough and did not want to wake her if she was sleeping.  Mid morning I finally called and got no answer.  A few minutes later she called me.

The conversation started as expected…rough day, tears on both sides of the phone.  Then she tells me she just talked to my sister. 

At this point I need to back up and give some history.  A while ago….many months, maybe close to a year ago, my sister’s little ‘Toto-like’ dog got hit by a car and passed away.  She was devastated, as was the Brick.  When my sister had visited last summer, before my dad passed, the Brick fell IN-LOVE with this dog.  He was the perfect blend of cuddly lap dog and feisty little “big dog in a small body.”  Within a few weeks of the dog’s passing, she found a similar sized and looking dog that just seemed perfect.  Not a replacement by any stretch, but a nice addition to her fur babies.

So, back to today.  My mom tells me that she has just talked to my sister and that her new dog has just, like 10 minutes ago, been hit by a car.  He dug under the fence (that was installed in the last year) while my sister was working in her memory garden and ran.  Before she could get him back or get to him, he got in the street.  Oh, my!!  To have him go, the same way as his predecessor and on today of all days!!!  Obviously, she was very upset.  My mom, being half a country away and unable to do anything to help, was also very upset.  Again…the irony.  TODAY??  Really????

The day goes on and things seem to settle.  THEN!!!!  My father in law (whose wife’s birthday is the 8th) has been having some tests done for some blood/white cell issues.  Hub’s step mom called him to let him know that his dad has Acute Myeloid Leukemia.  WTF????  Really?  Not to sound selfish, but today we get this info?!?!!?  Couldn’t the tests have taken longer to get back…just a day??  Haven’t we had enough!  There are three options for treatment:  1. Do nothing and prognosis is 3-4 months  2. Chemo once a month for the rest of his life (this is an otherwise healthy active man)  3. Go through 7 days of massive chemo in the hospital, in hopes of killing all the existing bone marrow blood cells and the new cells growing back healthy, with an additional month of hospitalization and tests.  His decision needs to be made by Monday so he can be hospitalized on Tuesday after a platelet transfusion.

We are strong!  We will move through this and all else we face!  We have faced great obstacles and overcome them already!  Both sides of our family are strong and close.  We have support from and give support to each other.  I do not doubt we will move through this with struggles, tears, strength and hope.  We will recover and thrive.  My FIL will fight and do any and all things he can to heal.  Today was rough, very rough.  But—tomorrow is new day.

Ironically the ‘Daily Ohm’ reading in yoga this morning was about sending out good thoughts instead of negative ones.  About not worrying about family or friends, but sending positive thoughts and prayers forward.  Because, as we worry we fill the world with negativity and that impacts our attitude and actions as well as those we encounter.  Instead, we should send forth positive thoughts and prayers for success and healing, not worry and fret, because the positivity will carry us, and all those we touch in our day, into tomorrow.

Tonight as I reflect on a very emotional day, I send forward thoughts and prayers for healing, closure, love and strength to all of my family and friends.  I send positive thoughts to all of you, to all of the people I encounter and to the world.  In the closing of my yoga instructor……

“In each of us there is a place where the entire universe dwells.  A place that is full of love, light, peace and joy. When you are in that place in you and I am in that place in me, We Are One.” 

My Father’s Ghost…..

Well, not ghost.  Reincarnate?  No, that’s not right either.  You decide….

I was sitting in the optometrist office yesterday while the Brick was getting his vision therapy.  With only a few moments to go before the end of the session, I was trying to finish up a game on my iPad.  The office door opens and I notice a pair of jeaned legs and sneakered feet shuffle in.  For some weird reason I thought of my dad, who passed away June 6 of last year.  My dad almost always wore jeans and sneakers while at home, but so do many men.  Maybe the upcoming anniversary of his passing has my dad in the forefront of my mind.  I don’t know why this pair of legs and feet made me think of him.

I look up at the gentleman the feet and legs are attached to and the tears well in my eyes.  This man, this total stranger, could have been my father’s twin!  I stared—like socially inappropriately stared, with tears welling in my eyes!  The gentleman spoke and the voice was dramatically different from my father’s and I was snapped back into reality.  Knowing the Brick would walk out any second I fought the tears and looked back down at my iPad, still processing what I had just seen.

The inside office door opens and the Brick walks back into the lobby area and says, in a normal volume “Mom, its Grandad!” I could tell by his face and expression he knew it was not really my dad, but that this gentleman looked just like him.  The Brick had a funny sort of smile and odd expression on his face.  I asked how vision therapy was and he replied.  I stood up and we walked outside.  The Brick turned to me and said “He even smelled like Grandad.” 

By this time the tears had returned and I was shaking and crying.  I miss my dad so much and having seen someone who so closely resembled him so close to the anniversary of his passing was just too bizarre.   We got in the car and the Brick asked “Maybe Grandad got reincarnated?”  I replied “I doubt it.  He was ready to be with God and now Grandad is healthy and not in pain.”  “I know” the Brick said “but it would be cool to see him again.”

Yes, it would buddy, yes it would.  Love and miss you Daddy!

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