patience & persistence
January 17, 2012 § 1 Comment
If I could, I would write these two words in ribbon and tie them to my day, a beautiful reminder in moments of doubt and uncertainty that I must move mindfully forward with patience and persistence as I wade through preliminary procedures for my son’s Individual Education Plan. For those that do not know, my son is diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified an Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder. This year my son started Middle School and as his peers settled into the routine of this new milestone, my son unraveled. Months later my husband and I are still searching for answers and guidance.
I have requested a battery of tests to identify my son’s abilities and challenges in an effort to insure he receives the education he deserves. My son has grown tired of tests, my husband and I still have little information to inform our decisions. Like the proverbial needle in the haystack we keep striking blindly into our days reaching out in search of answers, hoping to grasp the yet unattainable.
While we wait on test results, I brainstorm; I read and research various sources looking for pieces of my son in text books to help me understand the simple truths that complicate his days. Interpreting social situations is painfully frustrating. Dividing tasks into manageable steps that can be systematically followed in a timely fashion to complete an assignment requires assistance. My son struggles to stay on task, his mind cluttered with ideas that tug at his attention; light, sound, textures invite him to hide or alternately explore. These truths are ever present and often unacknowledged.
If you were to meet my son, you would probably find him endearingly quirky. He works to make eye contact and contort his face into appropriate responses. At times he will stand in another’s personal space, speak excitedly in run on sentences about subjects beyond his age, punctuating his thoughts with misplaced humor. In those moments you may wonder at his maturity or quietly question if there is something else informing his behavior. My son works daily to navigate unspoken social cues and to meet countless external expectations. I hope a day will come when others will meet him halfway; attempting to understand and appreciate his hidden gifts. Loyal, determined, kind, and curious he is a source of immeasurable joy and inspiration. A new day is on the horizon and I am filled with hope for his future.
My son’s school is organizing an event to educate students about invisible handicaps. My son has offered to lend his voice to the day in hopes of raising consciousness for and appreciation of differences. It will be his first formal act of advocacy for himself and others like him. As he gathers his thoughts, I wonder at the words he will share and how they will be received.
It is a year of growing pains, trying to adapt to change while challenging others’ expectations daily; creating friendships and partnerships in a new school setting. Patiently and persistently we move forward towards answers and acceptance.
scribblechic 
He is so brave and such an inspiration.