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The Struggle is real

One of the most difficult roles one is expected to adapt to is that of a parent. With no prior guidance or warning, individuals/couples are expected to be on top of the game and never goof up their job; as a parent. From changes in one’s daily routine, new eating patterns, the difference in sleep patterns, hardly any area is left in the lifestyle of the couple that remains unchanged after the arrival of the new one. However, some specific set of parents have it a tad bit harder than the remaining rest. The parents of children diagnosed with Autism.

Having the opportunity to get up close and personal with a couple who fall in the above criteria, the following is an account of their struggle as parents of Autistic twins. Mr. A and Mrs. B are the proud parents of their 3-year-old twins; Master X and Master Y. Both the children were diagnosed with Autism Spectrum Disorder approximately a week back at the Genius Lane Child Development Centre.

Mr. A and Mrs. B, both felt that their children are not behaving like other children of the same age group. They were both yet to indulge in meaningful verbal communication, had great difficulty in maintaining eye contact and the biggest concern of all, no understanding of toilet training. All these difficulties proved to be big hurdles in the couples parenting skills.

Mr A at one point mentioned, ‘I don’t remember the last time I went out with my wife for an outing alone’. The couple unanimously agreed that their lives changed drastically after they realized that their children need extra care. Having an Autistic child in the house is difficult as it is but having twins, no better than a nightmare for the parents. They recalled that the twins usually indulged in throwing things out of their rightful places. For example, when X would throw the clothes out of the cupboard, Y would throw things in the kitchen, leaving the parents flustered and feeling completely out of control. Mrs B has started waking up early morning and cooking the whole days food as the twins would not let her out of their sight throughout the day. She also mentioned that there were moments where she felt that she is failing as a parent. She, like many other parents in the same situation, blamed her children’s delayed development to bad parenting.

It is usually seen that whenever there is a discussion about Autism Spectrum disorder, the main focus is usually on the children. How to plan interventions for the child, to get the correct diagnosis, help the child overcome his developmental delays. Hardly does the focus go on the parents or the full-time struggle they go through. Mr A remembered 4 mobile sets that he lost to his sons’ anger in the past 3 years and Mrs B solemnly mentioned that she has been diagnosed with Blood Pressure issues due to the high-stress levels throughout the day.

Mr. A finally decided to get help with the children and approached Genius Lane Child Development centre to help them handle their children’s’ tantrums better. The couple claimed that they were able to see some positive changes in both the children’s’ behavior within a week of starting the intervention. Both X and Y started showing visible improvement in maintaining eye contact and has already increased their sitting in one place time to approximately 3-4 minutes at a stretch.

The two things that really helped the couple were the videos provided by Genius Lane post diagnosis of ASD and the peer support they received immediately after joining the program. They were able to connect and communicate with different parents who were subjected to similar behaviors at home and realized that they are not alone. They got to know that the developmental delays in the twins were actually common symptoms of the disorder and finally realized that there was nothing wrong in their parenting. Mr. A happily mentioned that they immediately started following some of the suggestions shown in the videos as a part of the program and saw visible positive changes in the twins’ behavior. Mrs. B here mentioned that she finally fees she is not alone in this parenting journey.

Being a caregiver to a special child is a full-time job with no pay, and like any other job, it comes with its own highs and lows. When asked if they would change anything about the twins, the couple without any second thought said nothing at all. ‘Nothing can replace the feeling that we get when we see them smile’.

The struggle of being a parent of an autistic child is real, yes! However, manageable with the correct guidance, intervention at the right time and some unconditional peer support.

- By Ms R. Mehra

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