Meet the Boys
[prefers no photo be posted] Andy, age 27, born prematurely with underdeveloped lungs, but otherwise grew up as the average boy next door. Though the single fact that we were very young parents, and thereby he was a guinea pig, probably qualified him as a special needs child. He is a gifted artist. Andy began drawing recognizable objects with crayons at age six months.
He is the most amazing big brother. As a teenager he accepted his brothers via adoption, completely immersing them in his heart. Andy recently proposed marriage to his girlfriend in the rose
Beyond sharing these tidbits, I respect his love of privacy.
Lee, age 14, born prematurely at four pounds, neglected and abused as an infant, came home to us at age one year (the size of a six month old), living with a completely preventable birth defect...fetal alcohol syndrome. FAS encompasses behaviors too wild and varied to list, learning disabilities, short term memory difficulties, growth deficiency, co-morbid syndromes of Bipolar Disorder and ADHD, as well as food allergies, to list a few. Although we were not able to gather his complete medical and life history until nearly age 5 years, we knew from day one we had a live wire on our hands. Lee keeps our day-to-day life much like being a test crash dummy family...living from one wild ride to the next.
His short term memory difficulties make homeschooling quite an adventure as he has to be repeatedly re-taught…particularly in math and spelling. While Lee has many interests each is fleeting due to his inability to sustain focus and much of his time is spent wandering in circles, literally, of frustration. As with all children of fetal alcohol syndrome, Lee will always need an external brain to help him control his impulsive behavior. There simply is no pause factor between think it and do it or anger and retaliation. His brain is permanently damaged from the terratogen of alcohol while in uterus. Everything is made all the more difficult because Lee looks like any neurotypical boy, only displaying subtle physical traits of FAS, and society expects him to behave as such. He is taunted frequently by peers due to his small stature, another effect of FAS. Having begun growth hormone injections a little over three years ago, he remains three to four years behind in growth.
Telling you these facts about Lee cannot fully explain the stress and uncertainty of life for and with a child of fetal alcohol syndrome. Neither can it convey the passion with which he lives life, nor the love and compassion he has for others. And his laugh, ah his laughter, there is none more delightful or contagious. Lee enjoys cooking, animals, golf, video games, all things Star Wars and socializing. It is difficult to remember a time when he did not talk, run or climb to the highest point available.
I find joy in the spontaneous fun and energizing vitality with which Lee sprinkles our lives.
Mac, age 11, born prematurely at three pounds, neglected as an infant, came home to us at age two months. He lives on the autism spectrum (Asperger's Syndrome), with suspected ARND (alcohol related neurological disorder), Sensory Processing Disorder, asthma, and allergies. As an infant he was diagnosed with reactive airway disease, gastroesophageal reflux and suffered breathing/heart apnea requiring frequent resuscitation. He lived the first eighteen months of his life frequently in and out of the hospital, at home attached to the wires of his apnea-heart monitor, taking numerous medications, enduring percussion (being pounded in the back to clear his lungs) and vomiting most all of his feedings. Neither he nor I slept more than thirty minutes at one time the entire eighteen months. There was always things to do and medications to give to keep him breathing and enable him to hold some of his feedings down.
Today Mac is an intelligent, creative boy who can watch an in-depth film of how to construct a space shuttle and then do it...probably in record time. But please do not expect him to follow social graces. Difficulty with social skills is a defining aspect of a person living with Asperger’s…those social rules and ques have no relevance for Mac.
A voracious reader, he loves to draw, invent, assemble and disassemble things. If he can see it and read it or see it and hear it, Mac learns. He does not usually retain by auditory methods alone, which is somewhat confusing as he listens to music and retains every word. Until we were aware of his Asperger’s, like everyone we assumed he practiced the well-known selective hearing technique.
Mac looks like an average all-American boy, and society expects the all-American boy behavior which he cannot give. He experiences peer ridicule, which he does not truly grasp the jest of at this time, as well as those disapproving looks from adults. He is perceived by the public eye as being rude and uncaring.
Mac is a train fanatic, enjoys the music of Led Zepplin and the Beetles and wishes he were born decades earlier. Mac is also my outdoors man, (albeit a clumsy one) often found on his bike or digging in the dirt with his construction vehicles.
As with most Aspie's, he is a loner. Living with Asperger’s Syndrome and sensory integration dysfunction, Mac has a difficult time functioning amidst the hyper activity of Lee and the extreme emotional outbursts of both Lee and Wil. He withdraws, retreats or is at times found with his head stuffed between the sofa cushions. Who could blame him? And do not make a sudden change of plans, please; advance notice and reminders along the way are a must.
I find joy in viewing the world through Mac's eyes…being in those little moments when a child on the autism spectrum lets you in; there is not a more beautiful vantage point.
Wil, age 11, born prematurely at two pounds, neglected and severely abused as an infant (the second worse case of child abuse in a large metro county), came home to us at age one year the size of a three month old...body broken from head to toe, lacerations and extensive bruising, malnourished, curled in fetal position, a little body of broken bones unable to make a sound or suck a bottle.
He lives with spastic cerebral palsy and several co-morbid issues...including but not limited to ARND (alcohol related neurological disorder), PDD-NOS, Sensory Processing Disorder, strabismus, and food allergies. As an infant Wil had a feeding tube and later surgery to control extreme gastroesophageal reflux. He has undergone numerous eye surgeries and lower body surgeries. He will need additional surgeries.
Wil also suffers from Post Traumatic Stress Disorder due to severe physical abuse the first year of his life. He has no conscious memory of the abuse, but his body reacts involuntarily to quick movements and certain touches as though he is about to be struck or otherwise physically harmed. I cannot list all the horrid things my child experienced the first year of his life.
While working to physically heal Wil as an infant, I spent every other waking moment insuring his abusers were imprisoned for the maximum of 20 years without parole...not enough. He has a life sentence due in most part to the abuse.
Wil is easily frustrated when socializing with other children. He is frequently asked “why do your eyes do that weird thing where they go different directions?” He never retaliates toward others, but when he feels the burden of being outcast…such as being told you can’t play this with us because it’s too hard or your legs don’t work right…he comes to his dad or me in tears.
When Wil is angered he becomes completely unmanageable, difficult to restrain and must be removed entirely from the situation. He often takes hours to calm, usually with the aide of music. Still, Wil greets each day with a smile, a kiss and a hug for me. He has taught me to push through every challenge put before me because it is what he does. And despite having every reason to distrust the world, Wil loves everyone unconditionally.
Wil also loves NASCAR...ask him anything about NASCAR, anything. He also enjoys country and Christian music and banging his drums. Wil's eyes are beautiful, deep pools of blue, and who could resist that dimpled chin. He was never expected to walk, talk or have measurable intelligence…just try to keep up or hold your own in a debate with him. He never ever gives up.
Wil is my soulful child. He has an insight and love of life beyond compare. His thoughts and the way he is able to simply, yet meaningfully, express life's truths never fails to touch my soul.
I find joy in Wil's zest for living, his kind spirit and his ability to make everyone smile.
And...
Lee, Mac and Wil continue in various combinations of psychiatric, speech, occupational and physical therapies. When the boys came into our lives as infants, we were told to expect them to have great difficulty in bonding...it was never an issue. The majorities of their health issues have been overcome or are well-managed these days with Wil having a few more surgeries ahead.
As a family we struggle daily with the physical and emotional turmoil of special purposes. We are blessed by the physical and emotional turmoil of special purposes. The line where struggle ends and blessings begin is blurred. I use the term special purpose because a special need indicates only the taking, and they give far more...so please, never refer to me as a hero or having done something wonderful in adopting our sons.
Just as with our biological son, Lee, Mac and Wil were our sons from the moment of conception. God created them for us, and we searched really hard to find them and bring them home. My sons courageously fight the odds stacked against them and strengthen me daily.
The reality is they are each all-boy...they are brothers...we are a family. We do what boys, brothers and families do. Our lives are filled with happiness, hope and love. I have no doubt that my sons will realize whatever dreams they strive for, because their dad and I will never tell them they cannot.
