Acceptance...the first step

 

You are perfect from what I see

     One of the toughest times in the life of the parents is of accepting the disability their child could be facing. We take it so much for granted that our child shall be born perfect. The mother waits those 9 months with dreams of having that perfect baby and nurturing it to perfection.
     At birth seeing the child and her own pain, one never thinks that there could be an issue unless the doctors do the required check ups and inform. Many countries still do not screen the child for hidden disabilities and most times unseen disabilities like hearing loss go unnoticed till the child is about 1-2 years of age. Mild and moderate goes unnoticed even longer. The parents too grow with their baby and adjust to its need till a family member or an outsider points out a problem that has gone amiss.
     From my own experience I missed out many months too as I was so overtly overwhelmed with having a perfectly looking baby girl after the birth of  two of her cousins who had other disabilities. So when my family member pointed out, I dismissed it. You never think that the child who is growing with you is facing an issue. Both adjust to the new life that comes with the birth of a baby.
     The moment the mother realizes that there is a problem and it needs diagnosis, most times they wish it to go away or just stay in denial. Even going to a specialist takes strength and acceptance. It’s of course unnerving! Very difficult as it’s a path few are able to easily accept and walk on. There is no defined path as each child is born differently lived in different circumstances and environment.

Accepting you with all that I see and all that I have 

     Fear of the unknown path, direction, correct advise, finances and ability to be able to support the child with needs are just a few of the concerns. Mothers have the hardest time accepting that her baby that she so dreamed of, can have an issue. Social stigma in various communities also adds to the pressure of bringing up the child with special needs. So prayers and wishing for miracles come as ways of coping with it. Self pity, denial, self bashing and guilt take over their world. They don’t realize that it’s not their fault and though we are so advanced in science, we still cannot predict many disabilities that may come along with the birth of the baby. Self pity and guilt takes over their new world and the child is suddenly neglected. They give up as it’s scary and the many thoughts that take over their lives somewhere leaves the child out. There is a certain disconnect with the child.
     I have had many conversations with mothers over the years very closely. As I heard them, a lot was there that was left unsaid. Their hesitation and anxiety was always understandable and I did say to them that it’s okay to acknowledge that “this is difficult and maybe it was better they did not have that baby”. I have seen a kind of sigh of relief in them as these are feelings society would shun this thought and judge them as bad mothers. Each mother goes through this phase as she knows she is now bound by many changes that come with a disabled child. It’s scary and daunting. Her world shall not be the same and doesn’t know yet what her “new normal” shall be. No one openly accepts this but when I acknowledge that I did go through this and many other mothers did too...most of them feel relieved and accepted. They bury these feelings due to fears of judgment and also are unsure about feeling that way. “How can you wish you didn’t have that child! It’s inhuman and unthinkable!” So instead they bury these feeling deep inside and hurt with guilt between the various other emotions.
     Accepting every feeling coming in is I think the first step towards acceptance of the situation. To let her know that it’s okay to feel this way...is the biggest strength and power one can empower her with. The guilt is lesser and she starts to empathize with herself and the baby. It’s the fault of neither. So a new and stronger bond is formed of love, compassion and empathy. She learns to accept the situation and the baby and it’s easier then to take the next step. She accepts that there is something amiss and she needs to move forward and get a diagnosis and support that comes with a child with disabilities. Once she accepts this...it’s easier to get her involved and guide her to a space where she can work closely with her very “special” baby. But yes...despite this we can still expect varied emotions and it’s a seesaw kind of situation where she would require someone to be a pivot and see her through this phase. I truly believe “acceptance is empowerment” and it’s the first step towards supporting a family towards the world of special needs. 

Early intervention supports academics

  

Digestive system in clay

   Can’t stress more on early intervention! Working with Prisha in the first 5 years was very enriching as well as exhausting, yet I see the benefits of it over the years. Talking to her in rich language while showing her things around me, bringing in details, stressing on important parts of speech etc and also always pushing her to think and make a decision, helped us a lot in her skills she has developed today. One such example is in the picture below.

    For biology, she needed to make a 3D model of the digestive system in clay. Now I have always encouraged my kids to use the resources around instead of rushing to shop which is an easy option but it saves money, time and is easy on the environment. She looked into the deep well of her resources in the cupboard and found some left over clay from her previous school( 2.5 years old now, yet good once soaked 😉) and a bag of red wax clay( again 2.5 years old left unused). She rattled off on the phone about it while I did my groceries. I don’t give suggestions anymore as I believe in self empowerment and self help. Due to intense hands on work all these years, she found solutions to problems like...lack of enough raw material, alternatives, finding ways to work with old resources as they were dry, finding the right material that’s plastic coated to avoid sticking, etc. The red wax was new material she worked with and instructions were in Bahasa. So she found ways to work on it. By the time I returned and did the rest of my work through the day...she worked behind closed doors(to avoid me walking into a messy room and blowing my top off) and by night she presented the model to me! Look at the details... the way the organs are piled up like they do in our bodies and then color difference that served two purposes...avoid buying another pack of clay and then shows the difference between organs and the intestines. Bonus... looks beautiful and above all...she learnt about the digestive system in a very creative way! True work of art! 

     Now tell me why art isn’t important....why creativity is for selected few and only academics are important.  We are born creative and art should come naturally. It brings extra zest to learn the subject besides relaxing the mind from the learning pressures. Encourage kids to self learn, take away the pressures of learning by helping them develop their creative sides and help them become problem solvers through this journey. They also feel more pride as it’s their work of art. They also feel good that their parents trust them with their skills and get more confident about themselves. They learn to take failures better and through small victories learn to be self motivated as they grow. Never ever too late....resist spoon feeding, instead let them experiment, fail and find their path to success!! I shall be uploading the project once completed. Hope this post helps someone to see how early intervention supports kids life long.

Awareness talk in IWA Jakarta

Amazing response from the group

An active session

An amazing afternoon spent with IWA ...Indian Women's association group. It was lovely to have a very good attentive audiences who were eager to learn about my journey, hearing impairment, speech therapy and its importance, role of parents and society in helping them to be integrated and how it's possible to lead a normal life where nothing is impossible. The hard work we put in inspired many to come forward and share compliments, their feelings, the vulnerability of few who face this issue and need help and of course lots of good words that humbled me further. All this and more I owe to my guru Mrs. Alaka Hudlikar. She made me the woman of substance as they say and gave a direction and purpose to follow in life. It's always humbling to help someone who is going through those lows of life which you have overcome.  I am blessed to be able to put my one small drop in this ocean. Sharing the moments through YouTube. #agbell

https://youtu.be/ddP8fHUhyG4

I hope this brings little awareness around.