Meltdowns

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I recently had a very insightful exchange with an autistic friend of mine about meltdowns. She explained to me that during a meltdown, she is fully aware of her surroundings and the people’s reactions to her; but unable to control her body. The meltdown is very much in control, until she is able to calm her mind and body to recover.

This exchange gave me so much insight and reinforced my thoughts/approach to Mike’s meltdowns.

My approach to meltdowns developed first from an acknowledgment that my son has a disability; he isn’t engaging in these behaviors to ruin my day. He is unable to fully control his behaviors. When you view a meltdown with the same compassion, urgency and concern as you would a person having a seizure; you tend to recognize that your role is to remain calm and have a plan.

With this understanding, I developed an approach Mike’s meltdowns to help him learn to self-soothe, with the intent to help him avoid or decrease the frequency and/or severity of his meltdowns.

My approach, in essence, was to utilize calming techniques I learned in yoga.  In addition, I wanted to act as a guide for him. I kept my behaviors very ritualistic in nature. I saw significant benefit in providing a framework of consistency for my own behavior. He soon knew what to expect and it removed his fear of an unknown reaction from me. It also allowed him to slowly regulate his behavior to mine.

As soon as the meltdown began, I would move Mike to a safe surface, either carpet or a bed. I would remain silent, extremely calm and model deep breathing. Over time, he joined in the deep breathing with me. I placed NO DEMANDS on him. I simply remained physically connected. By ‘physical’ I’m not implying that I’m restraining him. I would gently place a hand on his arm, back, or leg.  On occasion, I would apply mild rhythmic strokes. I used a deeper pressure to provide sensory input, but I gauged my pressure on his reaction. At times, a simple touch was all that he tolerated. I followed his lead and never forced the connection. If he retreated, I followed him to remain physically present and connected.

If the meltdown intensified, I became more sedated. If he looked at me, I provided a compassionate smile, but no notable reactions. The only language I ever used was a simple chant, “You’re a Big Boy – You Can Do It.” I would alternate modeling the deep breathing and quietly repeat the chant to him.

Over time, Mike joined me in the breathing and chanting. My behavioral framework provided him the structure to recover from the meltdown. He could focus on and join my ritualistic behavior to regulate and calm his body and mind.

Eventually, the breathing and chanting became a tool for him to utilize to self-soothe. He would engage in them when he was under stress. I believe that he eventually began to sense his body melting down and used the breathing and chanting to regulate himself.

He continues to utilize these tools today and recently offered the strategy to his sister.

My daughter is a new driver and was navigating a drive-thru window for the first time. She wanted to switch seats with me to avoid the drive-thru. From the backseat we quietly heard, “You’re a Big Girl – You Can Do It.”

 

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The HATERS

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Almost daily, I receive messages or posts from family members alerting me to the hatred that is being transmitted over the Internet.  The ‘Call to Action’ messages I receive break my heart because I understand how hurtful the words can be. We love our children and we want to protect them from being victimized by discrimination and/or hate crimes.  Many of our children/adult-children lack the ability to report crimes committed against them; many lack the ability to speak.  Even when crimes are reported, the number of prosecutions/convictions is significantly lower than the general population.  It is often difficult to prosecute when the victim cannot testify.

Our fears are real and we have no method to escape them.  For me, I try to avoid reality.  I am unable to read the horrific stories of abuse committed upon our loved ones.  When I am confronted with these stories, it takes me a very long time to recover from the images.  I truly view all people with disabilities as my family members.  While I don’t condone violence, I don’t now how parents recover without becoming criminals themselves.  Clearly, a jury of their peers (parents and loved ones) would acquit their actions – we understand the strength of unconditional love and trust.

The trust that is involved in being able to handover your non-verbal child/adult-child to another person is unlike any other.  While they are often as fragile as an infant, they lack the cuteness. Unless you know them, they can be annoying.  Over time, family members become immune to the vocalizations, repetitive behaviors, and quirks our kids exhibit.  Our normal is a very different world. Our tolerance is significantly higher and our LOVE is unmatched and unconditional.  Few can meet our standards, even when we set the bar low.

Overall, society doesn’t value our children the way we do.  Judgments and assumptions of our families flow freely and often without a filter.  We live in a time where it is still socially acceptable to exhibit feelings of hatred and discrimination toward people with disabilities.  We are a minority group and we don’t have a strong voice, making us an easy target.

I’ve experienced the shift myself, as Mike grew older bigger, and his cuteness wore off.  Mike now looks disabled and people no longer question my parenting.  While I don’t receive as much judgment, there is an uncomfortable awareness that some people display. Rarely do people seek him out to engage him or even to offer a smile – most simply avert their eyes.

In all honesty, I don’t entirely blame society for this.  There is an uncomfortable bubble of politeness that most people respect.  At times, I have put this bubble around Mike myself.  It can be exhausting dealing with the looks, even when they’re supportive and kind.

All this said, we are incapable of changing the world we live in.  We are a minority group.   We are open to discrimination and hatred that is based simply on our very existence.  Yet, we are a minority group, unlike no other.  Our members are often helpless and mute. We must rely upon a society that is often, at best, simply uncomfortable with our very existence.

How do we ever change the heart of a person who hates us without justification?  The answer is simple, we can’t and we shouldn’t waste out time trying.  We must focus on changing the discrimination that we face in our world.  I am far more disturbed by ONE incompetent ESE (Exceptional Student Education) employee than I am by THOUSANDS of anonymous people of the Internet.  They have no real power or purpose.

My Internet blogging software provides me the web URL of people who click on my blog.  There are people reading these words who do not have family members with disabilities.  They are here to rejoice in the challenges my family faces.  The ONE time I explored these links, I was outraged and ready to mount a war.  Then it occurred to me, there is not ANYTHING that I can say or do to a person who is celebrating MY life struggles.  THEIR life, evidenced by their very existence on my blog has already punished them for ME.

So, me dear friends, blinders on and stay focused on the real fights!

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The Day Alec Baldwin’s Brother Turned Me Into A Liberal

I have always been socially liberal but a huge supporter of school vouchers and controlled government.  I am a Florida resident; Mike was diagnosed under Governor Lawton Chiles and was basically offered no services to treat his autism.  I supported Governor Jeb Bush and applauded the changes he implemented for Florida residents with disabilities.  I’ve lobbied for people with autism on both sides of the isle, both state and federal.

I was honored to have Senator Hillary Clinton take the time to speak with my daughter about having a sibling with autism, and then acknowledge her struggles during her speech.  I was proud that my Representative, Adam Putman recognized me on the street in DC.  My son’s voice was being heard and I was seeing change.  The best way I can define my politics is to say that I was my father’s daughter – I was a Republican.

In 2012, Governor Mitt Romney was running for President against President Barak Obama.  There was a significant amount of debate about healthcare and Medicaid issues.  Since Mike is covered under Medicaid, I truly wanted to take a closer look at what both parties were proposing.  So, there I sat, watching Martin Bashir on MSNBC – not certain who I was going to vote for:

 

 

“WTF – Did he just say, CHARITY?”

YES, his response to funding the proposed cuts for the basic care of disabled Americans was that the funds would be provided by the charitable contributions of corporations.  My son should live on CHARITY?!

(INSERT MOMENT OF SHOCK, DISGUST & DISBELIEF)

The next day, I threw on my vintage Jeb Bush t-shirt, jeans, flip-flops, and my big sunglasses and headed to the Republican National Convention in Tampa.  The entire city was on lockdown and I was surprised that there were no public areas for residents. Like many locals, I wandered the street looking for politicians and/or celebrities.

During my journey, I stumbled upon the headquarters for the Tea Party compound.  Entrance to ‘the compound’ required security clearance, which I did not have.  While I was speaking with the intern holding the clipboard of approved guests, I was approached by Stephen Bannon, the director of the movie, ‘Occupy Unmasked’ and frequent Fox News Channel guest.  He is basically the Michael Moore of the Republican Party.  Long story short, Mr. Bannon, in HIS words, has “a thing for blonds” – I was cleared and he escorted me into the event.  Mr. Bannon was even kind enough to allow me to interview him for my Facebook friends.

 

 

Unable or unwilling to answer my questions, Mr. Bannon decided that I wasn’t exactly his type of blond.  He alerted security and I proceeded into the party to mingle with the other guest.

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After a brief conversation with a Tea Party Radio talk-show host, I was placed ON THE AIR to discuss the proposed Medicaid cuts.  Again, it was stated to me that the Republican Party’s solution to their proposed budget cuts for the disabled was “charity”.

 

I left the event knowing who to vote for …

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My message to ALL of my then, fellow Republicans was simple: 

My son is a Severely Disabled United States CITIZEN

– He is NOT a Charity-Case!!

Autism Sucks!

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“MIKE WAS APPROVED FOR SOCIAL SECURITY SUPPLEMENTAL INCOME!!!!!”

And it sucks – AUTISM SUCKS!!  I’m filled with sadness as I sit imagining a life on the $710/month that our country is providing to meet the basic needs of disabled citizens.  Even worse, I’m one of the lucky ones – my son was approved on his first attempt.  I have been hit with a reality that has shot through my heart.  I’m NOT posting about his college acceptance letter – I’m posting about his approval for a life of poverty and a reliance on government assistance.

I know that there are those in the autism community who will attack me for stating that “Autism Sucks” and I’m envious of their perspective.  I’m also wondering if they have blinders on to the challenges facing our family members.  Do they know how many adults with autism are wasting away in group-homes?  Do they share my fears?  How do I embrace a disorder that has caused my son so much pain and struggle? How do I embrace a disorder in a society that does not provide a respectful life to its most vulnerable citizens?

Hating autism is not about hating individuals! It is about hating that individuals are in pain. It is about hating that my son was unable to ask for a drink when he was thirsty.  It is about hating that our family members are vulnerable. It is about hating that we must fight for them at EVERY step along the way.  It is about hating that they will outlive us.

I am beyond the ability to even imagine or consider what Mike would be like without autism.  He was diagnosed prior to his second birthday; I had a few years to dream before the gap grew too wide to ignore.  Those dreams are long gone and I love him unconditionally.  I love him, and HE is a wonderful gift, but I do not think that autism is a wonderful gift.  I do not want an autistic grandchild and I do not celebrate when I learn of a child being diagnosed.  I know the challenges that come with the diagnosis and it is not an easy journey.  I also don’t feel like my son was ‘kidnapped’ or that there is a typical person inside of him.  He is simply my son – Michael, my son, whom I love.

If you are one of the lucky ones, who celebrate autism, I respect your journey.  I hope that you will respect mine – especially today, when all I see is an unknown future of challenges. Until we live in a world that PROVIDES a respectable life to people with autism, I am unable to celebrate autism.  I’m far too busy at the fight!

Let’s Talk About SEX

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I hate to be the one to break it to you, but the joys of puberty are not limited to changes in physical appearance and the seemingly endless emotional rollercoaster.  There is also the welcome addition of an increased sex drive and behaviors.

I am a firm believer that every person with a disability is an individual, so I’m going to address this issue globally.  In all honesty, sex education isn’t about teaching the mechanics; it’s about keeping your child, adolescent or adult-child safe.  Sexuality is intrinsic – it is a basic function of humanity.  The desire to release sexual tension is neither diminished nor rendered extinct based on functioning and/or developmental levels.  Denying access to the appropriate guidelines necessary to nurture your child’s sexuality, is denying that your child is a sexual being.  It is, in fact, denying his/her humanity and rights to a respectful life.

If you’re still not motivated, consider the joys of dealing with these scenarios:

–      Inappropriate touching

–      Public Masturbation

–      Engaging in sexual intercourse

–      Viewing child pornography

–      Becoming addicted to pornography

–      Inappropriately touching a minor

–      Being physically assaulted in a public restroom for looking at another man’s genitals

–      Being a victim of sexual abuse

Our children are at high risk for all of these scenarios.

 Now that I have your attention, what do we do?

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After my own cringe moment, I thought to myself, my son is a person; he deserves to enjoy his sexuality just like everyone else.  It is my responsibility to teach him the socially acceptable places for outlet and provide the guidelines.

First, if you have hang-ups about discussing sexual behaviors with school staff, therapist, siblings, family members, and anyone else involved in your child’s life – get over it!  If you have a difficult time getting over it, you are placing your child at risk.  Learning how and where will keep your child out of jail and will protect them from becoming victims themselves.

GENERAL SEX EDUCATION PARENTING TIPS:

 –      Respect that your child is an independent person, who deserves a respectful life, inclusive of a safe, healthy sex-life.

–      Teach your child to take care of bathing, hygiene, and  dressing independently.

–      Start Young:  behaviors that are cute at 4 can be criminal at 14.

–      Distinguish private space from public space.

–      Allow your child to lock their door and establish a ‘Knock Before Entering the Room’ policy.

–      Teach your child how to use a public restroom.

–      Monitor Computer Access:  This includes blocking access to dangerous adult material and in some cases, allowing access to limited safe materials, within the perimeters of your family values and what is developmentally acceptable for your adult-child.

What and how you decide to teach will vary depending on your child’s ability to understand.  Utilize social stories to establish firm rules.  Continue to review and monitor your child’s understanding of the rules.  And above all, don’t freak out – it’s only SEX!    

EVERYONE IS BEAUTIFUL

Tonight I will sit in a packed auditorium to attend the ‘Everyone is Beautiful’ fashion show at my son, Mike’s school.  The show is a collaborative event hosted by the Cosmetology students, for the ESE students.  While the teachers and administrators view this event as just another school function, it is so much more for the families and students.  For some parents, the event seems almost unbelievable – most schools just don’t extend themselves beyond the basic standards of ‘necessary’ inclusion.  Our school, Plant City High School, is not only including our students – they’re celebrating them.  There is a school-wide standard that our kids are to be included, educated, protected and WANTED.

As part of just the regular routine, every Wednesday, Mrs. Ritenbaugh’s Cosmetology students host a spa day for the ESE students.  The ESE students get their hair, nails, and makeup done by other high school students.   For parents, especially those who have children in wheelchairs, the service lessens their workload.  It’s one less thing we have to do – the task of taking your child for a haircut has been removed.  For the ESE students it’s an opportunity for them to feel special and visit with their typical friends.  For the Cosmetology students, it’s a lesson in humanity.  They’re receiving skills that will prepare them for a disabled client and, perhaps for some, a disabled child of their own someday. Friendships are made and the students have fun!

_Ashley McElroy gets her hair done by ____________

(Ashley getting her hair done.)

 Plant City, Florida is known for their strawberries and strawberry season is celebrated.  There is a festival, parade, beauty pageant, and strawberry shortcakes on every corner.

In 2006, Summer, a PCHS student was crowned Florida’s Strawberry Queen during the festival.  Summer was a cosmetology student and participated in the weekly “Spa Day” for the ESE students.  The week that Summer was crowned, she wore her crown and sash during the Spa Day.  Summer, unfazed about being the queen, jumped in to do Ashley, an ESE’s student’s hair.  Ashley, on the other hand, was MESMERIZED!  Mrs. Ritenbaugh quietly observed the girls from across the room.  Ashley, unable to take her eyes off of Summer, said to her, “you are beautiful.”  Summer responded by telling Ashley that she was even MORE beautiful.  Then Ashley said, “I am beautiful and I am going to be in a pageant and be a queen someday.”  Mrs. Rienbaugh and Summer, in unison said, “YES, YOU ARE AND YES, YOU WILL.”  The Everyone is Beautiful Fashion Show was held that year and every year since!

Ashley McElroy with her buddies Sarah Kelley and Rhodia Ale

 (PCHS’s beautiful Queen Ashley)

As a parent, like most, I have seen and experienced teachers and administrators who should not be working in the field of education.  A few have even left me questioning their morality.  While I LOVE sharing stories about PCHS with you, it also brings me sadness.  This story should NOT be the exception – PCHS should be the NORM!  How is it that this school can meet MY NEEDS – not just my son’s?!  I shouldn’t be considered a ‘lucky parent’ because I don’t spend my day worrying after I drop Mike off at school.  My standards for Mike are HIGH and they’ve exceeded them!  Trust me, for a school located just up the street, I WAS not only the squeaky wheel – I WAS THE BITCH! … and I’m STILL not over Mike’s experience there.

I suppose the simple answer is that PCHS wants my son there.  It’s a standard of acceptance that comes from the top.

In the State of Florida, schools are ranked on a grading system that includes ESE students.  Schools with large ESE populations typically rank below their counterparts because of their contribution.   When our Principal, a PCHS graduate herself, was asked if she was concerned about the large ESE population negatively impacting the school’s ranking, she replied that she would simply have to work harder to bring the general education students higher.   PCHS is an older, rural school, with a diverse population; it is also an A-rated school.  BRAVO RAIDERS!!!

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BTW – I offered to solicit supplies for the program in this posting.  Mr. Ritenbaugh replied that nothing is needed – the funds are reaching the students!!

SIDE NOTE: Mr. Ritenbaugh joined our ESE team this year and is one of Mike’s teachers. We are extremely fortunate to have him on our team!

Connie, I Honor You

The auditorium fell silent as Mrs. ‘R’, the cosmetology teacher, stood before us to share some of the history of the Everyone is Beautiful Fashion Show we were attending.  It was a story that most of us had never heard.  The story was filled with the horrific nightmares parents who love their disabled children fear.  And, it was filled with LOVE – yes, LOVE – and all that is good in humanity.

The story was about Connie,  an ESE student at PCHS over 20 years ago.  I don’t know much about her history before she became a student at PCHS.  I hope that she knew kindness and compassion – but I doubt these things existed in her world before.

Connie was mentally disabled and bounced around the system for years.  She had been neglected, physically and sexually abused by family members and those responsible to care for her.  Abandoned by a society that placed little value on her life, she was left to care for herself.

Mike’s Teacher, Ms. Denham has been teaching at PCHS for over 25 years.  When she first encountered Connie, Ms. Denham was  at the beginning stages of her marvelous career.  What she lacked in experience, she made up for with compassion.

Connie arrived to Ms. Denham’s class filthy.  Her clothes were dirty and the smells of sexual assault permeated her body.  Horrified, Ms. Denham documented Connie’s abuse and filed ALL the complaints available to her.  As she told me this story, Ms. Denham commented, “I wasn’t as outspoken then as I am now.  I did what I could.”  As a young teacher, her hands were tied beyond the ‘formal system’ that was failing Connie.

Connie was a high school student with short hair that was rarely wash. She frequently suffered from head lice.  Since students with head lice are not permitted in school, Connie would be sent home.  Fearing for her safety at home, Ms. Denham would clean Connie, and comb her hair every morning after she arrived to school.  As Ms. Denham told me the story, her eyes wandered to a corner of her classroom.  I could picture her caring for this child with the same compassion she shows my son today.  I thought to myself, “what an amazing career this woman has had.  I can only imagine what she has seen and accomplished.”

When Ms. Denham filed complaints to address her concerns about Connie’s hygiene and head lice, those responsible for her care responded – Connie arrived to school with her head shaved.

Horrified by their actions, Ms. Denham took over full responsibility for Connie’s hair.  She showed her the love and care that her life deserved.

Connie eventually moved on, but the seed of compassion for her remained.  Eventually, a program was developed.  A partnership between the cosmetology and ESE teachers. A partnership made possible ONLY by their desire to do MORE and to do it BETTER!

Over the years, the program has grown and flourished.   Every Wednesday, the ESE students are brought to the cosmetology department for a ‘Spa Day’.  They get their hair, makeup, and nails done by other high school students.  They’re valued, pampered, and treated with dignity.  The Cosmetology students are gaining life experiences that will prepare them for a disabled client or perhaps, a disabled child of their own someday. Friendships are formed and they’re learning acceptance.

The lessons being taught by Mrs. ‘R’ stretch beyond the realm of cosmetology – she is teaching HER students about humanity.

Nobody knows where Connie is today.  There have been positive changes made in our society and I hope that she is safe and valued.

As a mother,  and as a member of society, I honor Connie’s life because she mattered.  HER pain and HER struggles have enriched the lives of THOUSANDS of students – both disabled and typical.  A child, once discarded by cruelty,  has accomplished more in her legacy than most.

Connie, I honor you and your contribution to my son’s life.  

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The story will continue…

Lock Up

“THANK YOU for hand cuffing my son and transporting him in your police car.”

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Yes, I made that statement. And yes, I sincerely meant EVERY word of it.

Mike was on his FIRST field trip with his class, to the Strawberry Festival. The Strawberry Festival is an annual event that celebrates the local strawberry harvest and other agricultural accomplishments. The event is held at our local fairgrounds and is a mixture of carnival rides, games, and agricultural displays.

The trouble started as soon as Mike entered the fairgrounds. He was greeted with a cart, selling the typical carnival junk and he wanted a bubble gun! Now, when I use the word, “wanted” what I mean is that he had a desire so intense – it consumed him. The teachers and aides on the field trip were able to redirected him away from the first cart. Unfortunately, they were greeted by a cart on every corner.

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His desire for the bubble gun turned to anxiety. The anxiety quickly turned to aggression and Mike was unwilling to remain with the group. The teachers were unable to calm and/or control him and decided that the safest option was to transport Mike back to school.

Deputy Barker, the school resource police officer, was dispatched and arrived on the scene within 15 minutes of receiving the call.

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As I’ve previously noted, Mike is a VERY big young man. He is 6’2″ and weighs approximately 230 pounds – he is incredibly strong and fast. He is physically intimidating. When Deputy Barker arrived, the staff was having a very difficult time keeping Mike with the group. People were starting to stare and the fairground’s ‘local’ police officers were observing at a distance.

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It was then that I received the phone call. I had met Deputy Barker on a couple of occasions and found him to be a very compassionate man. Our school has a very large ESE population and he has worked cooperatively with the staff for several years.

When he called me, his words were direct and quick. He simply stated that Mike was melting down and bolting from the staff. He was going to remove Mike from the fairgrounds and transport him back to school. He wanted to accomplish this task without any involvement from the ‘local’ police officers who were observing him. He was informing me that he intended on using his handcuffs to gain control over Mike.

I immediately understood what he was saying – Mike’s size matters. He can be very intimidating to people who don’t know him. He feared that the ‘local’ police officers would attempt to assist him and possibly use unnecessary force. In that moment, I knew how much this man cared. I knew I could trust him.

With the assistance of the school staff, Deputy Barker handcuffed Mike. When Mike realized that he was the ‘bad guy’ and wasn’t going to get away with his behavior, he complied. He calmly walked with Deputy Barker to the police car without incident. He was placed in the backseat of the car, and transported back to school where he finished out the school day.

NO, I was not asked to pick him up.
NO, he was not suspended from school.
NO, he did not receive additional,
unnecessary disciplinary actions.

The school GETS it –they did not reinforce Mike’s behaviors and they

did not reward him by sending him home.

Now, the thought of my autistic son being led away in handcuffs was not a pleasant one. It’s incredibly painful to know that your child is probably scared and that there’s nothing you can do about it – except trust. My faith in Deputy Barker mostly came from his composure during out brief phone call. He wasn’t frustrated, intimidated, angry, upset, or flustered by Mike’s behaviors. He also understood the bigger opportunity – to teach Mike a lesson, while ensuring his safety.

While the purpose of the field trip was to educate the students about agriculture, Mike learned a far greater lesson that day. He learned that there are unpleasant consequences to bad behavior. He learned that he must respect and listen to police officers.

I couldn’t be more thankful for the compassion and understanding that Deputy Barker showed that day. He made sure that Mike was uncomfortable, scared and SAFE. He made sure that the experience taught Mike a life lesson that he NEEDED to learn.

The next day, I visited Deputy Barker with Mike. We reviewed a social story about what had occurred. We reviewed the options and consequences with Mike. HE GOT IT – he has participated in the Strawberry Festival field trip EVERY year since, without incident.

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Some lessons are best learned the hard way.

The Pain

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I can remember my daughter’s first day of Kindergarten – 5-years after Mike was diagnosed. I was standing amongst the other mothers watching our babies, in their Catholic school uniforms, embark on their first day of school. We ALL had tears in our eyes but my tears were different. While I was emotional about my daughter’s transition to Kindergarten – my tears were mostly for my son.

As a former Catholic school student, there’s an emotional bond in wearing that plaid jumper and those navy blue shorts. Seeing your child in ‘their’ first Catholic school uniform is a transitional moment. It’s a bond that can only be appreciated by ‘other’ Catholic school students.

As I looked at my daughter’s Kindergarten class, I found myself consumed with the little boys. The pain was unbearable and I was relieved that I was able to mask my tears – attributing them to my daughter. In reality, my tears were for Mike. He wasn’t wearing the navy blue shorts, with the white shirt, embroidered with the school logo. He had autism!

Over the years, I’ve had countless moments like this. They mostly surround events or experiences that Mike should be participating in.

I’d like to be able to tell you that, with time, the pain subsides and that there’s acceptance – if there is, I haven’t found it. At any given moment, something can trigger me emotionally and I’m reduced to tears. What has subsided is some of the stresses. Gone are the 30-hour a week therapy programs and my obsessive search for ‘the cure’.

While I still grieve the loss of the son I was expecting, I’ve come to understand that the grief and pain that I feel is my own. Mike is not grieving any of these losses – certainly not missing out on Catholic school. When I shift my focus from MY perspective of happiness to his – I see that his life IS fulfilled. There is balance, acceptance, and Mike is happy.

It’s been 16-years since he was diagnosed and my goal for him is still the same. It’s the same goal I have for my daughter –be happy! If they can achieve that, they’re better off than most of society.

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