Disabled Lives Matter: An Open Letter to Jason Harrison’s Mother

Video: Dallas police open fire on schizophrenic man

Dear Ms. Harrison,

I just watched the horrific video of your son’s death and I am filled with emotion.

Let me start by stating that I am the daughter of a retired police officer, who was shot in the line of duty. Thankfully, for my father, his wounds were not fatal. I understand, firsthand, how challenging the job of a police officer is and I have tremendous respect for their bravery.

I clicked on the video of your son’s death with an open mind, expecting to see a bad situation gone terribly wrong. Instead, to my horror, I watched a video of your son being murdered.

As the mother of an adult-disabled child, I am heartbroken. I am shocked at how untrained, uncaring, and unprepared the police officers were to respond to your call for assistance. I am sickened by the heartless and calloused way they behaved while your son lay dying in your driveway. Hearing your screams and watching you run to the aid of your child brought me to tears. I cannot even begin to imagine your pain and the loss to your family.

For the past several months, the new media has been filed with coverage of protests and riots between police officers and the communities they are supposed to be serving. I have heard countless times – “Black Lives Matter.” If we truly desire to live in a society that values all life, where is the outrage for your son? Where is the “Disabled Lives Matter” protest?

The news coverage of your son’s murder seems to suggest that he somehow deserved to be shot because he was disabled. They are blaming him for not having the mental capacity and/or communication ability to understand and follow the officer’s instructions.

Weather or not your son lunged at the police, to me, is of no consequence. While a small screwdriver may pierce body armor and cause a wound, it does not justify lethal force. Where is the accountability of the police department? If your house were on fire, you would expect the firefighters to know how to operate the hose. Why is society excusing the lack of basic training of these officers? We can clearly see them taking an aggressive stance and shouting at your son. THEY escalated the situation. Their lack of basic psychological training should have disqualified them from responding to your home.

The sad reality is that society does not care about your son, or mine. There is no outrage at the lack of funding for quality adult programs, mental health services, or family support. We are forced to utilize law enforcement to assist us, while basic treatment is denied and/or cut.

I have had to make that call to law enforcement to assist me with my son, as well. It is not a phone call we make because we are bad parents or because we do not love our children. It is a call made out of necessity. It is a call made out of love to get the help our children should be receiving.

While the news media is minimizing the death of your son, I am writing this to tell you that his life mattered! It mattered to me and it mattered to every other mother of a disabled child.

Disabled Lives Matter, AH

2015, A New Year

For me, 2014 was a year of painful transition. As I look to 2015, I see a year that will be filled with more adjustments that will test my spirit. I am hopeful that in overcoming my challenges I will have an opportunity for peace. If I am lucky, perhaps even personal happiness – beyond the joy I receive from my children.

My beautiful daughter is a junior in high school and her days at home are slipping away. Soon she will matriculate to college and my little family will be reduced to two.

While I am facing a year of unknown turmoil, I refuse to let the darkness ruin the last year that I have with my daughter living at home. I refuse to allow myself to obsess over things that are beyond my control. I choose to have faith in my ability to overcome, as I always have, whatever life hands me.

On a daily basis I receive messages from people telling me how helpful my blog has been for them.  Parents connect with my ability to accept and find humor in my challenges.

What most of you do not realize is that you have helped me, as well. During a year when I could have easily been swept away in sadness and regret, I had you. Knowing that thousands of people were checking in on my life forced me to remain focused on the positive. Helping you through the challenges reminded me just how strong I am – how much I have overcome.

So, as we face 2015 together, let us remember that there is happiness in every day – we simply have to focus on it.

Happy & Healthy New Year, AH

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A Happy Day in 2014

 

 

Because You Have Autism

It has taken me several weeks to process my emotions and attempt to compose this blog posting.

While I typically have the answers to Mike’s question, this one left me speechless – unable to respond. In my mind, all I could conjure was because you have autism. Knowing that Mike would not be able to process the cruel realities of that response, I simply tried to redirect his attention elsewhere. While I successfully redirected Mike, the incident has been haunting me.

Last month, we celebrated Mike’s birthday with a dinner party at Outback Steakhouse. A few of Mike’s teachers and classmates joined us in the celebration. If you follow my blog, you have heard me mention Mike’s special friend, Lisa.

Lisa and Mike were classmates for four years and developed a true friendship. I have taken Lisa and Mike to Disney World, movies, school dances, dinners, and all of the school functions offered. They ate lunch together in the lunchroom and on occasion would even hold hands. In the most innocent way possible, Lisa is Mike’s girlfriend.

Mike and Lisa had not seen each other for several months prior to his birthday dinner and they were thrilled to be together. They sat at the end of our long table watching YouTube videos on Mike’s iPad, both smiling – happy to be together.

As we were leaving the restaurant, Mike grabbed my arm and said, “Lisa goes to the doctor to get a baby.” The comment jolted and confused me. I had no idea what he was referencing. In my mind, I started sorting through the catalogue of movie and YouTube scripts. I was stumped and a little concerned that other people heard his comment. I tried to shush him and redirect the conversation to his birthday, but he was determined to make me understand. He repeated the statement again and held up his iPad for me to see.

On Mike’s iPad was a cartoon picture of a family. The mom was in a hospital bed holding their new baby and the dad was sitting next to her. I immediately understood what he was saying and it was as if I knife had been plunged through my heart.

Mike understands the seasons of life. He wants what everyone wants – a family of his own.

That night as I walked our dogs, the tears started to flow. How do I tell my son that he cannot have what everyone else has? How do I explain that his life is ‘different’ and NOT equal? How much does he really understand? How much pain and longing will he experience throughout his lifetime?

Today, as I sit here writing, tears streaming down my face, I still do not have the answers. The only one I can come up with – because you have autism.

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“Thank You, I Needed That”

Several years ago, during one of our holiday trips, we went shopping at Downtown Disney. For those who are not familiar, Downtown Disney is an open mall, filled with shops and restaurants. The stores were very crowded with vacationers and locals enjoying the holiday decorations.

Mike, as always, was walking in front of me. I typically walk behind Mike. I am able to guide him through crowds verbally and redirect him, as needed. Also, he tends to walks at an extremely fast pace, whenever I get ahead of him, he speeds up to pass me.

As we were walking through one of the stores, Mike spotted a young man standing in line to check out of the store. The man was in his 20s and had two prosthetic legs. I can only assume that the young man was a war hero. His father was standing behind him and noticed Mike’s course correction in their direction.

Mike was on a MISSION and, in his excitement, picked up his pace. I immediately knew where he was heading and started chasing after him, calling his name – anything to slow him down. In my mind, I was hoping that I could explain his autism before he invaded their space.

As I was rushing over, I locked eyes with the young man’s father, he smiled and mouthed, “it’s okay.” I immediately felt some relief – at least he understands.

As we approached, I began apologizing. I started explaining that Mike has autism and is attracted to uniqueness in individuals. Before I could get the words out, Mike hit the floor to examine this young man’s prosthetic legs. Did I mention that we were standing in a crowded store! I was HORRIFIED!! The young man and his father were extremely kind and understanding – assuring me that it was alright.

As quickly as he hit the floor, Mike stood up. He looked the young man in the eyes and said …

“HIGH FIVE, Robot Legs – AWESOME!”

The young man gave Mike the high five, looked at me, and said …

“thank you – I needed that.”

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Jerry Seinfeld, NO AUTISM FOR YOU!

Jerry Seinfeld announces that he might have autism

– and the crowd goes wild!

After reading a few of the rants, I am left with only one question, ‘when did autism become a competitive sport?’

On occasion, I find myself asking this question when I read my blog. It typically plays out like this…

POST: Send help, Mike has repeated, “her skin turned to ice – her hair turned white” a million times.

     COMMENT: You should be thankful your son CAN talk.

     COMMENT: I would give anything to listen to my child script.

The comments are jolting and typically turn an otherwise positive outlet for parents into an uncomfortable downer. We are all affected by autism, why should any of us be thankful for the trials?

In case you are feeling isolated, please know, we ALL wish your child could talk! While I am happy that Mike has some language, I wish he could have a conversation that did not include movie scripts. Autism or not, as a parent, we ALL wish we could eliminate the challenges our children face.

Accepting autism is a process, wherever you fall on the spectrum, there are hardships, and there is humor.

For me, humor has been my lifeboat. As soon as I was able to laugh, I knew I would be okay. It takes a measure of acceptance to laugh through your life – whatever you are dealt.

I have the unique background of being an autism parent and an autism clinician. I have worked with countless families covering the full spectrum.

To the parent of a child on the lower end of the spectrum who is envious of the parent whose child is on the higher end of the spectrum, I say, be careful what you wish for. If autism were a competitive sport, there would be very few winners.

I can assure you, sitting on the floor of a school bathroom, crying with a 12-year-old with HFA because he cannot understand ‘why’ he does not fit in SUCKS!

In that moment, I was not thinking – gee, I wish Mike could experience this. Quite the opposite, I was thinking, I am so happy Mike does not experience this – he is HAPPY! While he has some desires beyond his limitation, for the most part, he is comfortable in his own skin.

From the outside, we can all look at Jerry Seinfeld and envy his success, for none of us truly knows his struggles – nor are we entitled to know them. I believe George said it best …

 “Jerry, just remember, it’s not a lie if you believe it.”

– George Costanza

So, lets all put away our daggers. Let us unify and focus our envy on the people who REALLY deserve it – the smart people, with money and vacation homes. The people who get enough sleep and have nice clean homes. You know them – the people who do not have any children at all!

It’s a JOKE –Yada, Yada, Yada – Serenity NOW!!!

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My Haunted House

I hear footsteps, crashes, doors opening and closing, voices, and strange noises on a regular basis. I am often jolted from my sleep in a panic. I am unable to locate objects or find that they have been moved. I often find things inexplicably broken.

Yes, my house is haunted – It has been for years.

In the movies, we often find ourselves wondering why the families do not move out of their haunted houses. Why do they subject themselves to the stress and anxiety of living with ghosts? Who would want to live in fear, waiting for the next haunting to occur, always on edge and unable to fully relax in their own homes? Why do they stay?

For me, the answer is simple. Moving would be pointless, there is no eluding the ghosts. They haunt me wherever I am. Even in solitude, there is no reprieve, for I know the phone can ring at any moment. A single call can rip me from a seemly normal routine and turn my day upside down.

Several years ago, I used that analogy to describe to a friend what it is like living with autism. I have never been able to come up with a more accurate description of my home life. I live with a heightened sense of awareness, constantly monitoring my environment for unexplained or unwanted noises and even silence. For I know from experience that any of those things could mean disaster. The unexpected is expected – it is only a matter of time.

Among other thing, over the years, those unexpected sounds have included broken lamps, a TV being pulled off of the stand, leather furniture being punctured with a candlestick, broken glass on a fireplace, the pool cleaning brush breaking out the screens of the pool enclosure, a stuffed animal being sucked into the pool pump system, and a $12,000 flood.

If you are the parent of a child with autism, you know exactly what I am writing about. Being jolted from our ‘normal lives’ is our normal life. We are constantly on edge and alert. Even sleep, when we get it, brings little relief. Being jolted in the middle of the night is a common occurrence.

It is not surprising to learn that many parents suffer from depression, anxiety attacks, and even posttraumatic stress disorder (PTSD). We never fully ‘turn off’ from our commitment and responsibilities. We are on call 24 hours a day, 7 days a week, 365 days a year and it never ends.

While I am ‘haunted’ ‘less frequently now that Mike is older, I am no longer ‘living with the ghosts.’ Simply put, we cohabitate. I am unaffected and unfazed by situations that would cause most people to run for the door. For me, accepting cohabitation was the only way I could gain control and achieve happiness. It was a choice to let go of being irritated by the accommodations one must make to live in a haunted house. By making that choice, I have been able to find my happiness within his happiness, even when it inconveniences and/or annoys me.

I have accepted that my house will always be haunted. I have been able to exercise the most annoying ghosts and even enjoy some of them. Thankfully, for now, the ghosts have not been as startling but who knows what tomorrow might bring? See that is the thing about living in a haunted house – you never know what will jump out to get you next.

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My Favorite Ghostbuster