Learning to Navigate

It’s been quite awhile since I’ve written, there’s been rarely a moment to catch my breath. But today, gratefully, it’s been a good day…so I thought I would take a moment to share.

The journey that I’m referring to began approximately ten years ago, when my nephew Tyler was born. Reading my former blog entry will bring you up to speed.

Tyler & I moved to the Cape with my girlfriend Janet approximately three years ago and during that time, things have been trying to say the least. Initially, I felt as if I had awakened to an artist’s dream…I was fascinated and mesmerized by the beautiful and breath taking scenery that surrounded me. Oceans, beaches, wildlife, galleries and artists everywhere…I was immediately rooted within my version of heaven on earth. But all of this was quickly overshadowed by a storm brewing within my son.

Tyler has undergone countless evaluations and received a multitude of diagnoses. And although I’m certain this list is far from complete, so far the doctor’s have determined that he has Asthma, Allergies, ADHD, PTSD, Anxiety Disorder, Asperger’s Syndrome and Wolf Parkinson White Syndrome. The latter brought about a trip to the Boston Children’s Hospital for a heart catheter ablation this past June.

We have been to countless doctor’s, specialists, counselors and behavioral therapists in an effort to not only secure the proper and most appropriate care for Tyler, but also to address the behavioral issues that have recently begun to spiral out of control.

Tyler is an extremely bright boy and his development was not hindered in the least in regard to speech, walking and learning among his peers at an early age. Quite the contrary, Tyler was quickly dubbed ‘the little mayor’ due to his friendliness and talkativeness with others. He maintains a seemingly infinite wealth of knowledge and facts and is eager to share these with anyone willing to listen. He possesses an inquisitiveness that rivals none and has an imagination to match. Academic evaluations have deemed him above average or superior in most of his subjects, but socially he has begun to stumble.

Tyler’s early years were anything but usual, and he dealt with far more than I care to remember at such a young & impressionable age. Despite everything, we have arrived here…to this place of reckoning, awakening, frustration and tribulation. And now the three of us have been thrust into an arena where we are uncertain of the rules, the game plan or strategy techniques. The adults at least, are well aware of the risks & what’s at stake…but how to relate that to a child who is struggling to understand EVERYTHING….?

This summer has been wrought with behaviors, tantrums and frustration. After nearly eighteen years in the field of Human Services & Special Needs, I’d like to believe that I’m a patient person, that I possess an understanding, compassionate, empathetic and loving heart. But I would be remiss in complete honesty, if I didn’t say that all of these things have been strained and stretched to the limit these past few months in particular. I love my son with all of my heart…and he is my son, I knew it the very first moment that I held him. My sister has countless struggles of her own, and although she believes she will always be his mother…she has, in truth, been absent from day one. But this is not about her, or her struggles, or her inability to be the nurturing parent that Tyler deserves. This is about a little boy, struggling to feel comfortable in his own skin, anxious to belong, to fit in…to feel safe and loved.

Over the past few years, I have watched Tyler grow and evolve from a friendly, talkative little boy…to a child frightened of his own shadow, terrified of bugs, uncertain of his friends, unwilling to leave my side and wishing he were dead…simply because it’s bedtime.

I distinctly remember the little baby I held in my arms, the toddler so willing to please and help out…and the little boy…who begged me to stay. This is not currently that child. This child is angry…beyond words. This child, despite his intellect, reverts to baby talk and tears. This child wants to be in complete control of his surroundings and his world…this child, assumes that everyone hates him, nobody cares about him and everyone should simply die. This is the child I am currently struggling to support, the child I want to save, protect, empower and love.

He currently growls from depths, I never knew existed…spewing hatred and vile things that look abnormally wicked on his sweet and beautiful lips. I know that this hatred is meant for neither Jan or I, but it doesn’t help to lessen the pain that it ultimately inflicts. There is a tumultuous storm of anguish and emotions brewing inside of my little boy…and although we’re doing everything in our power to ultimately assist him…we haven’t a clue how to save him.

That doesn’t mean however; that either of us have given up. Despite the frayed nerves, frustration, feelings of powerlessness and confinement…we’re still here. We’re still trying and still reaching for answers that we hope one day soon…will come.

In the meantime, we haven’t wavered from a path of structure, consistency & love. What more can we do?

Despite everything, I still see the same little boy that I held in my arms and promised to love & keep safe. This path, may not be the same one that I initially envisioned…but it’s our path…and if nothing else…it’s a path still woven with LOVE.

7 Responses to “Learning to Navigate”

  1. I have an autistic son who can be difficult at times. But I can’t begin to imagine what it’s like to go through what you’re going through. I hope that somehow, things get easier for you all.

    • Thank you Leander, knowing how difficult things can become…I truly appreciate your sentiments. Sometimes, it feels like we’re caught in a perpetual cycle of frustration & confusion. But at the end of the day, despite everything that may have occurred, I find myself grateful just to have gotten through one more day…and perhaps, just the tiniest bit closer to where we need to be to effectively help Tyler. ❤

  2. The ocean there is simply beautiful for I was there about four years ago and enjoyed the beauty it gave to me each day I was there. There is an artists who has a lighthouse there and has his studio in it and his work sits on the outside when he paints. I am sorry to read that your son is having a rough time and you and your friend as well. Your son, you and her will get through this and one day when you least expect it he will thank you for loving him. If you should need an ear then I will listen, you can yell and do all that stuff and I will not take it personally…my numbers on blog…Smile you and know that all will work out…Bev…by the way, thank you for your comment to me for you seem to know me and know that we all have our dark times…or non- creative times…

    • Thank you Bev, your words lend a great deal of comfort. The scenery truly is gorgeous here and it serves as a gentle reminder to me during the difficult times…to simply breathe and soak in my surroundings. When I remember to do that I am instantly grateful to be precisely where I am.

      As for the dark days of creativity, I understand completely…and yes, we all have them. My artwork, much like writing, helps me to clear the clutter and sift through my emotions. Often what I’m feeling can’t seem to be expressed or released any other way but through uncensored, unexplained and unplanned artwork. It’s during these times, that I’m able to create without expectations or the critical eye that tends to appear otherwise. It’s extremely healing, but if I’m not in the proper frame of mind…my brushes also remain untouched and my canvas empty.

      Thank you for offering to listen, I can’t begin to tell you how very much I appreciate that. Somehow I sensed that long ago. 🙂

      • Your welcome Tanya…Thank you and paint for you the many sunrise and sunsets that you see there….I created several pieces of art when there with oil pastels and I never enjoyed using such until the day I my feet hit the Cape and inspiring it was…Again, thank you for your kindness to me…Bev

  3. Lianne Noel Says:

    Thank you for sending me to your page , if you had not I would never have read the words that instantly made me feel better. You have describe a mirror image of my life with the girls (well almost as my girls were older when they came into my home) , and up until today reading exactly what I think and see on a daily basis I felt like i was the only person going through it. It is comforting knowing that others are , and are not only surviving but becoming stronger. It is amazing what you did for your son , and I hope one Amy realizes the sacrifice you have made.

  4. You’re welcome Lianne, and I’m glad this post was of some comfort to you. Trust that you are far from alone and that others indeed share a similar path. If ever I can be of some assistance, you know how to contact me. And whether or not our sisters ever fully understand our sacrifices, isn’t nearly as important to me as knowing that one day our children will. 🙂

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