Special Parent of a Special Child

I always say that with a special child is born a special parent. Being a parent is the most challenging role that anyone plays, but when you have a special child, the elements change with the absence of one very important factor, “hope”. But why is it still special. You learn to love someone unconditionally, without expectations, you learn to enjoy every incremental improvement, you learn to admire normalcy.

The journey of identification

I speak as a mother and not as an expert.

The first thing is err on the side of caution. If at any stage you feel that your child is behaving differently, is not showing age appropriate development, not looking at you, not responding to sound, not walking on time,? not talking, does not interact much, cannot focus on any activity for long, or focusses too much on the same activity, or spends too much time alone, is speech delayed or is afraid of unknown people or circumstances, please do visit a professional child psychologist.

Some of the common symptoms are:

speech delay

attachment to one song or toy

stacking of things one over another

rotating an object

flapping of hands

not responding to name by 1yr

getting uncomfortable with unknown people or places

aggression

The symptoms may not be common in all child having Autism or ADHD. While they may be very good at few things like would have walked at 10 months or can solve 50 piece puzzle at 2 yrs but is not talking on time, it does not mean that we take it less seriously. I did commit that mistake.

Austism and IQ and not related. Some kids have very high IQ, some normal and some have very low IQ. But their social interaction is always a gap.

The earlier we identify the issue, the better are the chances of improvement.

We have specific institutions which help in identification, the therapy centers have psychologists who can run the basic assessments, the child psychologists are available at hospitals and clinics. But whenever a schoolteachers raises concerns, or as a parent you see the difference, the right thing to do is to move forward rather than wait and watch and ignore the issues.

Dealing with Myself

Before I talk about how we dealt with the child, I think how I dealt with myself has been more important, because that defined how I dealt with the child. The child basically is very perceptive about our feelings. If we are happy, it reflects on them, if we are stressed, we pass it on to them.

Denial and acceptance- It was not easy to accept why my child was different. I blamed myself for maybe having skipped a few folic acid tablets, to my tendency to throw up during pregnancy to what not. Then I thought maybe I was not giving enough time and focus. Then I realized that stay at home moms who had two kids and treated both the same had a typical kid and an atypical kid. So the sooner I moved from my guilt it was easier for me to be at peace.

Why me- Actually this was easier to deal with. I have another child too and since I never question "why me" for her then I had no rights to ask “why me” for my second one.

Seeing the child suffer – The biggest challenge is to see the child suffer, dealing with the normal world that we try to fit them in. Now the only objective I have is to enable her to be happy and everything, her growth, development, fitting into the society, comes around it

Balancing the act- It hasn’t been easy being a working mom, being a mom of two children, and then running all the time for therapies and doing the therapies myself. At some point in time, if I sat down for 5 minutes, I didn’t know what I was doing, I would feel terrible, like I wasn’t doing enough, I was chilling out when I should be doing some therapy or taking care of my children. The shifting feeling from joy to guilt was so profound that it would go to disturbance level. It is only after I realized that overdoing things would not help and I had to organize my life and my child’s schedule better and let go at times that things became more settled.

The "me time"

While normal days are always the ‘normal’ ones, I switch off on few occasions, go for family functions, go for solo trips, girls’ trip and yes the family trips. It definitely helps with the “happiness quotient.”

The partnership

Between me and my husband, it wasn’t easy for me until he accepted the issue. But when he did, he was totally a partner in all the efforts of finding schools, sitting at the therapy center, just helping her with daily chores. Initially he felt I could only deal with her and she was not aggressive with me and that she did not want to be with him, but slowly he put in that effort and now we both have equal love and affection from her. This dual dependency model made both of us independent. He worked on it and it worked. Else I would have been tired, burnt out and would have had no space for myself when needed.

Dealing With My Child

?The difference- The difference used to hurt me initially until I accepted it. While all the young ones would talk, mine would sit in one corner, not engage with anyone. For 5 annual days straight, I saw all the children performing, mine would practice, do well until the final day and then just freak out with the loud noise and crowd and changed environment. I got her dressed up each time, went to the auditorium each time and came back with her without her performing. I still accepted that she learnt in the process. It was only this year that I saw her on the stage. And I cannot compare that joy with anything else.

Dealing with other children - I saw very small kids literally nurturing her, drawing stars on her hand when she would do well in class, taking her to the classroom, taking her to the restroom. These were KG kids helping her out. If she answered a single question, her teachers and peer group would applaud. But then she knew she was not same as them, in a class of 35 students, she felt alone and miserable and behaved aggressively. This was the darkest phase. I realized that she could not just be thrown in a normal set up and be expected to behave normal.

The stretched days -At one point in time I was taking her to full day school , then travelling for 1.5hrs for another 1.5 hrs of session and then working with her myself for another hour . It honestly led to her being super irritated and me being burnt out.

The Other child -Ever since we identified ASD with our second child, I guess my first child went into the oblivion. At one point in time I was so busy with trying to make things work for my second child, that even if the elder one wanted to share her day, I would feel like she was wasting my time. Fortunately, she is a very giving, caring child whose life centers around her younger sister and she has always said , “take care of her, I will take care of myself” and she has done that since she was 9 yrs old . It was only now when she moved to 10th that I started consciously focusing on her back. But in between years, I honestly have very little memories of what I did with her.

What Worked Out

The Therapies - I always wonder if I could have started earlier and the Covid days weren’t there when we were in the process of identification. The biggest change that came in the child were through the therapies. First time when she learnt to focus, to follow instructions it took time but then things became incremental.

While Occupational Therapy may be something that we may wonder, “why do we need this”, it actually helps the child with focusing and that is what augments the learning, or speech skills. Speech therapy and for little older kids the special education, makes the effective combination for the children to scale up.

The changes will not be overnight, it requires immense amount of patience to see those learnings take place. Some days I felt happy looking at how she learnt, then she unlearnt them as quickly. In the process I have learnt to accept the slow progress, the going back and forth on what she picks up, but when I look at where we were 3 yrs back and where we are now, I know how much our hard work has paid.

The Inclusive School

My child is on the lesser side of the spectrum. So I did not know if I should put her in a special school or normal school. Normal school was proving to be tough for her. So we found the best answer in an inclusive school. All her therapies are done during the language classes, GK classes, computer classes. She is with the class during her activity periods like swimming, karate, library and basic classes like science, social science and maths period. She has a shadow teacher who sits with her in the classroom and helps her to understand the instructions and keeps telling her what to do.

This has really helped us reduce our travel time going for therapies, reduced the working hours for me and my child and she is much more confident with her shadow teacher. This by far has been the most normalizing thing in our journey.

?Each day is an incremental journey, sometimes I feel my friends and family don’t understand me because I am literally dealing with a situation each day, I remain strong and positive and happy, but the struggle is real and sometimes it does get into me, I do worry about the future, I try not to, yet cannot ignore it. But each day when I see her learn even a small thing or say a complete sentence, we as a family celebrate. We never did any of those for my elder child and now we realize the importance of just being normal. The love she gives us is unparalleled. Wishing power and strength to all the parents and siblings who are part of this world.

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