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. 

A new direction...INCLUSION

     

A great start with Her name to begin with...Goddess of learning!

I walked into the office of the school as I had a meeting with the school head. Wondering what to expect as I just had a brief idea based our little conversations we had recently. After the initial pleasantries he spoke about the project that supported my volunteer work at the disabilty center in Jakarta. He asked me to write the name on the white board as being an American, remebering an Indian name could be challenging. I went up to write " Saraswati"....explained to him that it means the Goddess for learning....very appropriate for a center!
Disabilities should find inclusiveness and acceptance as its a huge part of society. As years are going by, more new disabilities are finding space and we are at a point where we can no longer close our eyes to it. Inclusiveness not only helps the child but also their parents as they feel they are being heard and not just kept out. I have to see my vision finding a place. Its been a small cause close to my heart since Prisha's deafness. Finding ourselves as the "odd ones out" most times , I feel the pain of parents who are seeking a place for their kids and the general empathy lacking in society about disabilities due to lack of awareness. Hence I have been very verbal about it in every forum...be it seminars, forums, schools or even communities around me. The bubble that many live in, there is little space for such causes and hence they need to know and feel as human as that creates a more aware society and a better world.
       Inclusion and acceptance of disabilities and over and above empathy for them in the heart of society is on my mind. I have seen and faced how no one understands how much it means to be respected for what you are and are going through. It means even more when you are made to feel at home and included in society. They don’t need pity and sympathy. Just acceptance, inclusion with few adjustments and be seen as human as they themselves are. Hence every place I am at I end up talking about the center I have come across. Multiple disabilities yet all are together and are happy kids. They need to be stepping out into a bigger world and even if a few are integrated...its a step forward. Its about one hand at a time.
     The head of the school has agreed to take a few students and a teacher in 2 weeks and visit the disability school and take it up as a project for learning for the students. I shall be coordinating between the schools! I am so excited about this as its a kind of dream come true! Its just not about my dream for myself but for a few kids who deserve a bit more opportunities in the world outside. Its humbling and very fulfilling and I hope I can handle this. The volunteer group for mums was formed just few weeks ago and is already having many members and meet ups and work is being done as and when needed. This is the next big step! I am hoping that this dream is fulfilled and I can see few kids soon move from the center to a normal school through collaborative work. As I scribbled on the board....I felt as if there was a divine intervention. What a way to start !! Writing the name of goddess of learning on a absolutely clean white board does indicate something!
     Meanwhile I am happy to keep putting my thinking cap, do some leg work, talk to few people around and get few things rolling for a larger purpose in life! Isn't that what we are looking at or should be aiming at? Beyond myself and out there holding one hand at a time! I shall update as the days go!

Am on Facebook

      After my blogging and Youtube uploads I have been encouraged by many to do go beyond, my mind and heart push me too. There is so much information that is there but sometimes it boggles you with the language and the magnitude of it. Sometimes a bit concise and simple language can make all the difference. The lecture at the deaf school too encouraged me to do go beyond and spread awareness amongst the masses.How and where was the question and then I thought of networking site. Everybody is on Facebook and that inspired me to start a page on FB and it has been liked by quite a few. If nothing more I expect the masses to learn a bit more about it as one never knows who would be affected and also they might just share with someone they know. I update it daily with a bit of information from me and some from the net. Am hoping it makes its place felt in due course of time.

https://www.facebook.com/pages/Impaired-but-Empowered/264962493565917

I am enjoying this and hope to improve on it as the years go. My personal experiences too would be there.

stages of mothers' mental state

I have realized over these 2 years that when one detects a child with impairment not only in deafness but also in any form of disability, the mother goes through very typical stages.I too have gone through it and see all the mothers go through it, as it is the mom who has actually gone through the pains of giving birth and is closest to the child.She spends the maximum time with them.
1. The moment one realizes the deformity or the disabilty, the first reaction is of shock.It takes a long while to realize it is actually happening.There is a lot of crying and trying to realize the reality.
2. The mom starts to get into a denial mode where she refuses to believe it is actually true.She fails to accept that the apple of her eye is having a problem.
3.Self blame follows where she feels she did something wrong, or she did not pray enough , or that she was not careful enough or all sorts of reasons where she blames herself.'Why me' is another very comman question she asks herself.
4.Jealousy is another very big part.One starts to envy anybody who is normal.You start to detest the world.One isolates from everything around and is only into self pity.
5.There are many moms who have contemplated suicide after wanting to kill the child.Basically wanting to escape the situation.
6.Many blame the child as it has got her into the situation and do neglect the child.
7.There is alot of unrest on the homefront too.The father too has his mental state to look after.
8.Financial situation also plays a big part in this whole situation.With cost of living going up any disability does bring with it a bit of financial drain.Doctors have to be consulted, tests have to be performed,remedial action is to be taken.All this and more does take a toll on parents' mental condition.sometimes families do break up in such tough times.
These according to me are more comman.There could be more and will keep posting as they come up.In such times it is very important that the family is together.A lot of support from near and dear ones can help the family to cope with it and give a good future to the child.When families break up it is the child who suffers more and I feel as a mom, it our duty that since we get the child in this world ,we owe him the best possible treatment.Do not be ashamed of the child .It is no one's fault.The child should be looked after so that he does not suffer from the 2 disabilities- one he is born with and the other that we give by not supporting him\her.