Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Thursday, March 31, 2016

How to Save a Life

My son Weston is happy, delightful and....impulsive.

Diagnosed with Autism/Aspergers/ADHD, he is sensory-sensitive and hard-wired to move.

When he was a small boy, this high-energy and sensitivity presented itself as playfulness and a joy for life.

But Weston is now a teenager.

Gone are the days of playfulness and joy, replaced instead with a darkness of mood and an overwhelming sense of frustration. His light-hearted spirit trampled into submission by a world full of individuals who do not understand him. Combine his feeling of alienation with a high dose of hormones and split second impulsivity....

And you create the perfect recipe for teen suicide.

Last month, Weston reached his breaking point. He was depressed, angry, and frightened by his thoughts of killing himself. He asked to be hospitalized, describing a feeling of overwhelming helplessness, fueled by social anxiety at school and a lack of support and understanding from the adults in his life.

After several discussions with his physicians, countless med trials and two visits to the ER, we were directed by his psychiatrist to one of the best child psychiatry hospitals in the country, a small 12 bed hospital devoted to treating those in similar circumstances, misunderstood children ready to take their own lives.

It was here that Weston found respite.

He was surrounded and supported by a highly-trained staff. He mingled with similarly "labeled" boys and girls who could relate whole-heartedly to his feelings of alienation and isolation. For once in his life he found a place where he felt safe to be himself.

How sad is it, that the place my son felt most comfortable was in a psychiatric ward of a children's hospital?

He stayed there for almost 2 weeks.

Here, he received medication management and group therapy. He was given important tools to help guide him in negotiating his emotions. He made friends and became independent. He helped other children. He healed.

We, as parents, were given a "crash course" in the workings of the autistic mind and how to relate better to a child whose brain works differently. What we thought was a child with a lot of ADHD and a little bit of autism, was actually a child diagnosed with a lot of both. We were asked to look at Weston's disability as a strength, and understand how successful he can be if he is guided to follow his heart. While his inability to "filter" can cause terrible mood swings it can also create an innate sense of "awareness,"  an awareness that given the right environment could blossom into genius.

We were told his ability to communicate is sabotaged by a wiring in his brain that prohibits him from listening and responding appropriately, they explained the dysfunction to be a type of learning disability. They gave us probing techniques that would help to ease his frustration.

We were told we needed to be patient and to allow Weston the time he needs to mature. They explained it was no coincidence that the hospital was full of children during the school year and empty during summer months since most public schools lack staff who understand the autism profile and lack the appropriate training to support these individuals.

We were also pleasantly surprised to hear from many of the nurses how respectful and polite our son behaved. Every day we visited, we received a new compliment from a new staff member. Each told us they did not want him to leave.

The irony of this did not escape me.

Weston's hospitalization was the best/worst days of our lives, a very sobering and informative experience.

We witnessed first-hand the staggering numbers of struggling teens stuffed like cattle into unaccommodating emergency rooms. We were surprised to see these youths treated like prisoners. These were children with sensitive souls, in desperate need of simple, compassionate psychiatric care, but instead they were victimized even further as they waited in ER departments woefully unprepared to manage their care.

They waited, much like Weston, under blinding florescent lights, on rollaway beds in hallways, or strapped tightly to gurneys as muscle-bound security personnel ensured their safety and submission.

Like many others, Weston was admitted to a bed in the hallway

I rolled him by a window in a hall lobby
Here he slept, while I spent the night sleeping in the two chairs beside him

Did you know that many ER departments do not have a psychiatrist on staff. This one was no different..

Did you know that many ER nurses are not trained in psychiatric medication management and the need for properly-timed doses?

Our ER nurse was about to give Weston all of his medications, at the same time. If I had not checked what meds she was giving him, he would have OD'ed.

Did you know that hospital pharmacies do not have enough medication in stock (or a service) to provide all patients with the medications they are prescribed, and therefore do not give some patients like Weston all their required medications?

Do you know what happens to children (or adults for that matter) who suddenly stop taking their prescribed psychiatric medications?

There was a young girl in the room down the hall who screamed bloody murder for over 2 hours.

"Mom, why don't they help her?" Weston asked.

I did not know how to answer him.

Eventually, the screaming stopped when her mother was escorted out of the building by armed security guards. She had become angry and shouted at the staff, begging for someone to provide her daughter with the appropriate care.

But finding an open bed in a psychiatric hospital is difficult.....if not impossible.

Ask any hospital social worker how often they are able to make an immediate placement? Never mind their ability to find an insurance company willing to pay for it?

Proper placement can take weeks, with many children waiting in hallways of overfilled and overwhelmed emergency rooms.

As a family we were fortunate.

The suffering we experienced was nothing compared to what we witnessed in several hospital settings.

I am thankful to Weston's psychiatrist for helping us to navigate through a broken system. I do not know how you thank someone for saving your child's life. I do not think it is possible but I will be forever grateful to this kind man for his compassion and direction.

To my son Weston, I am grateful for our journey together. We weathered a tempestuous sea. We found both help and healing and became enlightened by our exposure to a suffering that was much greater than our own.

    Open Your Eyes
    All this feels strange and untrue
    And I won't waste a minute without you
    My bones ache, my skin feels cold
    And I'm getting so tired and so old
    The anger swells in my guts
    And I won't feel these slices and cuts
    I want so much to open your eyes
    'Cos I need you to look into mine
    Tell me that you'll open your eyes
    Tell me that you'll open your eyes
    Tell me that you'll open your eyes
    Tell me that you'll open your eyes
    Get up, get out, get away from these liars
    'Cos they don't get your soul or your fire
    Take my hand, knot your fingers through mine
    And we'll walk from this dark room for the last time
    Every minute from this minute now
    We can do what we like anywhere
    I want so much to open your eyes
    'Cos I need you to look into mine