Source Magazine: Responsible Parenting
“What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive.”
Kunal and Reema was a happily married couple. They both were well educated and good in their respective professions. After 5 years of marriage and with lot of medical treatments and therapies, one day Reema gave news to her husband of expecting a baby. It was one of the most beautiful and awaited moment in both of their lives. After a few months, Reema gave birth to a baby boy and they named him Karan. As the time passed, Reema felt her son Karan was a bit different than other kids. Karan wasn’t enjoying other kids’ companies. At this age, he was3½ years old but he was not responding to his name, was not able to speak more than 3-4 words, was not making eye contacts when others talking to him. He liked collecting cars (preferably red in color); and used to flap his hands while walking. On a few occasion she got very irritated and cried a lot when someone showed affection to him and wanted to cuddle.
Reema talked about these concerns to Kunal but he made her shut and told that it was just her illusions and over concerning nature. Reema didn’t agree with Kunal’s views and went to meet Pediatrician. After examining and hearing concerns of Reema, the Pediatrician told her that her son might be at risk of Autism Spectrum Disorder.
Like other parents, Reema felt as if someone had “hit in her stomach” and had the wind knocked out of her. She felt as if other people had the same smooth life but her life has changed forever.
Like Reema, other parents of a disabled child feel the same. Parents go through different emotions at different stages.
According to Elizabeth Kiibler-Rass, in her book “On Death and Dying” introduced that the kind of emotions a parent goes through when raising a child with any disability including Autism are linked to five stages of grief. These stages might not go chronologically but parents are on a continual cycle, going through different stages at different times. These stages are denial and isolation, anger, depression, bargaining, and finally acceptance.
Reema also went through these stages of grief cycle.
Shock and Disgrief
Reema’s first reaction after hearing the diagnosis was disbelief even when she suspected something was wrong. She murmured – “This can’t be happening” and thought there had been some mistake. She even started feeling of breathlessness; went to automatic pilot mode and sat through the rest of the meeting with the doctor without really taking any more information.
Solution:
Reema left that meeting and gave herself time to react what she heard. She asked the doctor to give her another appointment. She went to her husband and discussed whatever doctor had told. They read all the relative literature, article and blogs on the internet. They both took all the necessary information and jotted down the list of questions needed to be asked to the doctor.
Denial
After getting all the information, Reema and Kunal sat together and again thought of whatever has happened. After a few minutes of discussion, they both went to the conclusion that there might be some mistake. They had so many things to be re-clarified with the doctor. They also went ahead and consulted more doctors to re-clarify their queries then started looking for some magical cure on internet.
Solution:
Reema and Kunal were very positive and optimistic for their child. After meeting with doctors and getting sufficient knowledge, they understood that there is no magical pill which can cure Autism automatically.
Anger or Rage
After going through the Denial stage, Reema took a deep breath but suddenly got angry – “Why me? There are other people around with their perfect lives, how come our own child has this disability?”, “We do lot of worship to god, then why god gave us such a punishment?”
Solution:
Reema threw out all her emotions, it was her right and there was nothing wrong in this. She took her anger in positive direction and looked for more services and assessments for her child.
Confusion and Powerlessness
Reema went through different websites and even met many specialists in this field. She even heard lot of words that sound foreign. She felt of losing her power and got confused as she was hearing words which she hadn’t heard earlier for her child. These statements and advises were coming from those experienced professionals which she had never met earlier. She had only one thought in mind “Just to Trust”.
Solution:
Reema started reading basic books on Autism and started learning the terminology; little by little she gathered knowledge and got less confused.
Depression
Reema wasn’t having a proper sleep, every time she was thinking about her child and autism. It became a 24×7 hours job for her. She realized that she was on a train she never wanted to board and there was no getting off.
Solution:
Reema discussed about all her emotions with her husband and had a good cry. Kunal took her out for some shopping and dinner to make her mind divert from Autism, at least for few hours. They both had a good time. Reema had a fresh breath now.
Guilt
After coming back from shopping, Reema recollected all her memories about her period of pregnancy and was trying to find out the cause of Autism her child has. “Was it the glass of Wine I had at my birthday party when I was pregnant? Or, was it due to the vaccination my child had?”, “Am I being punished for something I had done?”
Solution:
Reema stopped thinking for a while. She thought that she can’t change her past. “No one is perfect here. I only did whatever I thought best at that time.”, “So past has gone; focus on present.”
Shame or Embarrassment
Karan was invited in a birthday party, Reema felt shame about not having a perfect child “What will people think if I take him to the party?”,and “Everyone would be staring at him, when he would flap his hands while running. People will think I am a terrible parent when he would act this way”.
Solution:
“Well, my child is bit different; why should I worry what others will think. I am enjoying my life with my child”. Reema thought for a while and then stood straight and tall, she was confident now, she wanted to make this experience positive for her child and not for others. “After all I am a special parent of my very special child, they will respect me.”
Fear and Panic
Reema was bit panic and fearful whenever she thought of admitting her child in school. “How will he adjust in School?”, “New teacher, new school, new atmosphere, would he be able to adjust?”, “Is my decision right for this school?”, “What would be his future?”
Solution:
Reema wrote all these questions on a piece of paper. She took a deep breath and practiced a relaxation technique learnt from a counselor. She searched the self-help group on internet and even searched for school having sensitized teachers for Autism. She read the testimonials and feedbacks from other parents and collected few contact numbers of parents. She called them and had a word regarding the facilities available in the school. Later, she had a word with the school counselor and discussed all her concerns.
Hope
Karan joined a multi-specialty center. His symptoms were improving day by day, now Reema had a new hope. Treatment kept his behaviors under control and gave a positive impact.
Reema celebrated and cherished each and every moment. She shared her thoughts and accomplishments with her husband and near ones.
Acceptance
By now, Reema accepted that her child was having autism. She already worked through all the emotions. Though, her challenges were not stopped or solved to the level, but she was now able to cope up in odd situations and was gaining some control over her feelings. She also had a few accomplishments to savor and cherish that seemed ordinary and small to others. She started looking her child as a person, not a disability.
1 Comment
Very nice… Felt as if it’s my story!
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