Editor’s Note: Let us celebrate our love for our child – a blessing, a miracle, a creation of the Lord. Our IL member Swethasri shares her story about her journey with a special child. It is touching and very moving. Share your thoughts and stories with us too. Click here.
I wanted to share my life journey with my special kid who is with Down syndrome.
Writing here is just like I am sharing everything with my mother. You can call this a vent or sharing or giving information about few things or teaching how your life will change after a special gift given to you by God.
I got married to a very well dignified and educated family. It was an arranged marriage. My husband is very loving and caring person till date even after lot of challenges.
Everything was fine for the first 2.5 months and then all kinds problems started like relatives interference from my side which leads to very bitter arguments. I got pregnant with my first child after 9 months of marriage.
Even during my pregnancy lots of fights, disrespectful arguments, disagreements, insulting my husband, misunderstanding between me and my husband happened. I lost that beautiful loving relationship with my husband which is awfully inconsolable even now.
I delivered my boy and after 2 months he was diagnosed with down syndrome. There was crying, non-acceptance, guilt and on top of everything the fights and misunderstandings. In both of our family.; We don’t have anyone with intellectual impairment. My boy is the only one so we were in shock and all those initial stress.
So I joined my husband back to his place when my boy was 4 months and a paediatrician referred Early intervention. From there all kinds of struggle started. But I always thank God that he gave me a wonderful very special gift which many ladies praying who want a baby after 5 years, 10 years,15 years of marriage. I always thank Him what he gave me.
I learnt lot of things about the people, society, how they differently see my child and especially my relatives. I was in touch with them but somehow started getting away from them slowly.
I reduced going to any kind of functions like marriages and gave high priority to my boy. I was convincing myself, its all because of KARMA that we have to face all these things.
My boy,he was delayed in all milestones like creeping, crawling, walking. When he was around 2 years we moved to United States. Again a life changing move but in a positive way. It felt like God did not close all the doors. He opened this opportunity and we were able to breathe little from all congested extended families.
I am very very thankful to God that he gave me this opportunity as I always. So here in US till 3 years old Early Intervention happened at home. All the therapists come home and do the services. I do see a very big difference in the society. the awareness level is very high and people are very happy to welcome my boy and accept as a human being which gives me a very big relief. God heard all my prayers!
My boy completed 3 years then he started going to the public school and he was on 1:1 and also whatever therapies he was receiving in the EI continued in the school. He was doing pretty well in social, physical, but not very good in communication so he was continuously receiving Speech therapy.
I did a small analysis about my relatives and at one point in time I completely disconnected my maternal and paternal relationship including my parents. Some how I don’t have any kind of regrets that I disconnected them. Because my husband was always with me as a very positive support.
My boy slowly started moving away from other kids and did not want to mingle with other kids. He started some kinds of repetitive behaviours. When we talked about it with the paediatrician they said its a behaviour found in Down’s syndrome. Once he grows big then he will stop doing this. But he is not progressing so we are complained to the school about his less progress and asked them to increase the therapies. They were kindhearted enough and agreed after a lot of advocate. But still he was delayed in speech in the level of 2 year old boy. But he is now 8 years old and still struggling in communication.
Very recently he was diagnosed with Autism so its a Dual Diagnosis! Another big challenge! That’s why he is not progressing much and also his negative behaviours interrupting his academics and day to day skills.
Currently we are exploring more resources and trying to get help for my boy who can do his daily living normal to some extent. We moved to a different town and the school system is really pushing back and wants to reduce services. we need to advocate for more services because of his Dual diagnosis and he is still non-verbal.
It is a struggle. Its not very easy to have a special child at the same time I do see many positive with my boy. His innocence, his smile no one can have. As a normal people we always cry for more even though we have million dollar but my boy or any special kid, he is non-verbal he doesn’t criticise, hurt, bully, judge or gossip about others. At the end of the he is very happy and he makes me SMILE! Despite all of the stress. I am so happy to be a mom of my boy. He is so special to me.