Hang In There - Walk for Melod
Melod was born July 28, 1996 and it was one of the happiest days of our lives. I was just about 10 at the time and never did I ever believe that me and my older brother would welcome a third sibling to the bunch. Every morning I'd run to see him in his bed, and then run back home from school to play with him. He was one of the happiest babies you'd ever meet, and there was never a time where he wasn't smiling or laughing.
He was developing like any normal child - crawling, walking and eventually starting to form sounds and words. But that all changed when he was about 18 months old. There was something off. Doctor's ran tests and they diagnosed him with a foreign word called "Autism." My family had no clue what this even meant, but we soon found out. Melod started to grow physically, but mentally he would remain at a baby's skill level. He couldn’t talk. He was very active, running and bouncing from wall to wall, constantly rocking back and forth on the couch and mouthing everything he could get his hands on. He required 24/7 supervision, needed to be hand-fed and also wears diapers to this day. His attention span was non-existent and he never sat still.
Melod received educational intervention from a very young age - at home ABA teachers and went to a school for the developmentally disabled. My family became used to an alternate lifestyle. Social gatherings were near impossible. Make sure all the doors are locked. Get used to the curious stares from strangers. Normal things like haircuts and clipping nails became a 4-5 hour ordeals.
Through it all, Melod was a very happy person. Which made it much more shocking when we were notified by his school that he was hospitalized for self-injurious behavior. At the age of 12, Melod started open-hand slapping himself on the head with both hands. At its worst, Melod would hit himself hundreds of times a day. He would throw himself on the ground and thrash around. He’d try to bolt out of school or home at any given chance. When extremely agitated, he’d bite himself. He started ringing his wrist until the skin was broken and also scratched himself until he bled.
Melod would get only a few hours of sleep each night. We’d wake up at the crack of dawn to the sounds of echoing claps. We were forced to medicate him and would try to restrain him until he’d calm down and send him to school. Then we’d have to carry on with our days, whether it’d be school or work.
All hope was lost and my family was depleted. We made the toughest decision a family can make and enrolled him into a 24-hour residential program. Home was no longer a productive environment for him. We put our trust in God and the professionals.
Melod had the lowest of lows in the years to come. Phone call after phone call of bad news – injuries, hospitalizations, biting staff, and eventually seizures. He was given a hockey helmet to wear for protection. Whenever we thought things couldn’t get worse, they did.
Fast forward to today, Melod has improved a great deal. He fought his way to be where he is. He is less active and much calmer. He can perform simple tasks on his own when asked, pays attention for much longer and has become much more confident in himself. His self-injurious behavior has subsided a lot, but he still has his rough days which can be very intense.
Even during the worst of times, Melod would have moments of light and crack a smile. That told me there was still hope. If he could smile through this, so can we. We learned to live not day by day, rather minute by minute. It grounded us – showed us what is truly important in life. The curse did not come without its share of gifts.
That is why I’m walking. I’m walking for hope. I’m walking for the strength to fight back. I’m waking for every person who is going through the same struggle and feels that there’s no way out of this. The truth is – there is ALWAYS hope.
Melod has had a fascination with coat hangers all his life. He’d tear up closet after closet until he was satisfied with one. He’d then twirl and twist it for hours. It calmed him and gave him happiness. His obsession was well-known and school staff wrote in his yearbook to “Hang In There.” This quote stuck with me. All his life, Melod and my family has hung in there.
I am convinced that the advances in Autism research has directly helped correct Melod’s behavior and educate him. The hours upon hours of intervention, education and therapy has guided Melod and my family through a very difficult situation. The training provided to selfless professionals with huge hearts was key to Melod’s success. The overwhelming support of Autism community and its advocates are vital to Melod and individuals just like him. Through research, we can continue to search for better techniques and therapy to brighten the lives of those who need it. And only through research, can we find the cause – and ultimately – the cure to Autism.
On behalf of Melod, I ask that you give anything you can to help and I thank you from the bottom of my heart.
The Tarin family.
Hang In There - Walk for Melod
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|October 14, 2018||Jones Beach- Field 5||8:30am Registration Opens ~10:00 Sensory Friendly Welcoming Ceremony~NEW this year. No rolling start. We will have one single large start immediately following the Welcoming Ceremony.||Eddie Russo, Long Island Walk Manager 516-809-8211 firstname.lastname@example.org|
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