Parenting a child with special needs comes with challenges. While most parents celebrate the milestones of their children, parents with special needs children condition to celebrate the milestones later than usual. Every child develops differently and parents learn to accentuate the strengths of their children to help them overcome their struggles. Ismail, our ASH1L Warrior, is a studious kid and has come a long way challenging his limitations.
Ismail was born through normal delivery in September 2009 and apart from anemia, his mother, had reported no health concerns during pregnancy. The birth was complicated as mother became unconscious leaving Ismail in the cervix longer. After his birth, Ismail had to be placed in an incubator for 2 hours due to breathing issues. However, within 2 hours, Ismail showed improvements and he could recover. Ismail latched well and weighed 3.4 kilograms at birth.
Ismail had hit all his milestones on time except for delayed speech. He was non-verbal until the age 4 and by age 6, he started speaking in full sentences. His parents took him to a doctor and he was diagnosed with autism. They immediately started speech therapy which helped Ismail speak in sentences by age 6. As an infant, he loved to watch the washing machine and objects that rotate around him, and he wanted to watch the commercials on the TV a lot. He has good visual memory, and he wouldn't forget something he saw once, he would go after a month, he would still know.
When he started school, Ismail was different from his peers as he was not interested in engaging with them. He preferred to play by himself and lived in his own world. Ismail has temperament issues due to anxiety. He struggles with integrating loud noises and is very sensitive to them. Ismail’s biggest challenge is anger and anxiety. He is extremely punctilious about time and fixates towards being punctual. This attitude further worsens his anxiety and eventually triggers anger. He gets vulnerable and exhibits aggressive behaviours, mainly self injurious like head banging. He also has negative thoughts rendering himself as an insignificant child. In order to manage his anxiety-associated behaviours, Ismail was prescribed a drug “Abilify” but he gained excessive weight.
When Ismail was around 4 years of age, his parents noticed some irregular movement in his eyes. It was confirmed as nystagmus and it was corrected with a surgery. Ismail requires corrective glasses for his vision. He is scheduled for his second eye surgery soon.
Despite all his challenges, Ismail is a gifted and erudite kid with exceptional skills. At age 6, Ismail taught himself to read. Being a perfectionist, he is very good at his grades. On a positive note, his obsession compels him to achieve great grades but on the downside, it triggers his anxiety thereby affecting his ability to socialize and remain calm. Ismail has overcome most of his autistic traits and he is now considered having Asperger’s syndrome.
His parents hope the research on ASH1L can help Ismail conquer his anxiety, nervousness and fear so that he can lead a calm life filled with tranquillity and peacefulness.