Struggles of hearing aids

     

Being hearing impaired isn’t easy. Wearing hearing aids is even harder. Listening through it and trying to manage back ground sounds along with unclear spoken language due to various reasons is extremely challenging. People have different ways of speaking, accents, tones and of course distance from the listener are a few of the challenges. Many times people turn around and speak under the breath which can extremely be frustrating. Today I asked my daughter to list down all the challenges she faces at school in grade 11. She is on trial with new hearing aids which require further programming. The list she gave me just broke my heart. She works really hard and it feels extremely frustrating to see how difficult it is for her. We try and we will keep on trying to help her. At times we are tired and exhausted from this daily fight. Every day is a challenge where we are trying to accept every difficulty. Nobody will be able to even imagine except the deaf of course, how tough it is to have a hearing loss in a world which is extremely noisy and extremely loud. She is tired after an hour of exhaustive class and then it’s a whole day of school and then it’s the homework. By 9:30 PM we are asking her to go to sleep so that she has enough rest and her brain has calm down and is ready for the next day. I hope seeing this list, people will be more empathetic and understand the challenges faced by the deaf community. It’s just not the person but the entire family that suffers together. We are all waiting for the big day when she’s able to graduate from her education and stand on her feet. The climb now is much higher and we need to support her even more. The struggle is real, support is precious, understanding is required and compassion and empathy are the most essentials! It’s a tough fight and we always motivate ourselves by thinking of how difficult it was when she was just a baby we just get her to get a few words. Today she stands and gives presentations of even 30 minutes all by herself. I’m sure we will do this well and she will be a winner in times to come. We never gave up, we never give ourselves a choice, and we will never give up in future as well. For the moment we shared try to work around these challenges and make it as easy as possible for her. After all it’s the resilience and persistence that will make it happen. In the process I’m sure we will find hands that will support us and comfort us when we need it.

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. 

Motherhood challenge

Today was a very busy day! I had many mothers that needed help. What I am realizing is how complicated it looks yet it’s very very simple. Speech delay for various reasons. The age ranges from 1.5-3 and most mothers are concerned about the children not being able to speak. As I ask for videos I realize so much has changed from the time I became a mother 23 years ago. Mothering has become a difficult task and it has different kind of challenges. The speech delay is of a concern early by parents. And rightly so. Reasons are many and as I watch the videos...I find most children don’t have proper diagnosis. Most mothers are waiting for diagnosis, have diagnosis but aren’t too sure if it’s right, have speech therapists but I am not happy with what I am seeing. It’s unnatural and is taking away the joy of learning in children. They are not interested or just have too much going on or can’t process all that’s happening around and so speech delay is happening. I had many conversations today...few were feedbacks and progress of sessions done few days ago and few were new! It’s getting more clear to me that the kids born today shall have lot of challenging situations creating issues with speech. I am not surprised that most kids aren’t talking due to various reasons due to the environment around that’s not conducive to learning language and maybe are being termed autistic or being given other terms. Decades ago we barely heard of autism, hyper or ADHD. Today kids are quickly being labeled. Most cases today that I have do not look autistic but require an environment that creates space for learning and is rich in language. Mothers today are anxious and the need to make their kids smart is putting a pressure of different kind. Kids have tons of resources which they don’t need. They just need a space that just lets them be kids and to let them enjoy a natural and organic way of growing up. Few mothers have told me how well they are responding after a session with me. The autism tag seems to be under question and they are having lesser pressure and are enjoying teaching or learning with the children. It gives me so much joy as that’s how it should be. Let’s not separate the mother from the child but make learning or therapy a part of everyday life. Most therapies look like a wall that’s so hard to climb. I am hoping to break more of these walks and connect more mothers with their children. Grateful that I have so much to offer to mothers of today thanks to the mentor I have! Mrs. Alaka Hudlikar I have so much respect for you and can just show the world what good a therapist you are! I am extremely fortunate to have you. 

Say a firm “NO”

Why are we scared to address our kids, refuse few things and to just firmly say a no? Why do we give in to everything they want or need? Why do we want to overprotect them and are so afraid they will be hurt...we are afraid to hurt their feelings , why? Why do we make them feel that they are extremely privileged and have a right to get away with anything? And when situation demands they behave a certain way and they can’t ... we justify their wrong actions! Do we remember ourselves as kids when we did not have this much liberty? This is even more applicable to the special needs child! Having one or two kids these days is a norm and of one is special needs...every rule is bent for that child. My kids grew up with rules and discipline and they knew the reasons and the logic. If it applied to my son it applied to my deaf daughter. No exceptions, no privileges and no obligations. More parents are afraid to say a firm “no”! Is it that hard? We don’t realize we are handicapping them further by giving in to every whim and fancy. They quickly learn that they are “special” in many ways! Life gets difficult when these kids grow up and are expected to change their behavior in public. If they don’t, parents have to give out special offers or bribes and if that is not acceptable, they decide to stay away from public as it’s hard to be judged. Easiest in my view is to teach the special child the same values as your normal child. It gives us advantages...
1. They learn the rules and discipline.
2. They are treated as normal kids.
3. Reducing scope of future tantrums.
4. There is a lot of language exchanged which is another opportunity to increase their vocabulary.
5. You make them independent for a future life and prepared for society.
6. It gives you independence in the future as a parent as you wean them off. You don’t need to be tied for life with that child’s tantrum.
7. Society doesn’t need a bad behavior as parents are afraid to say a no.
8. Saving yourself an embarrassment in public by a tantrum.
As parents of special kids we have a special responsibility. Let’s not burden them with additional handicap. They know no better and hence it’s we who as adults have to support their growth in a positive way. By making them realize the power of no we empower them for life. They are prepared for the world and don’t need an undesired behavior. A “no” can be handled in many ways...at times a firm and at times a soft and at times a distraction! It’s just we as parents who need to hold ourselves and our hearts and do the work. Of course it’s a lot of work and intense sessions. But then as parents it’s for the long term benefit of the child and we as parents...so just go parents...gear up...get your act together and just say a firm ...”NO”! Say it as you LOVE your child. It’s for their future!