What Security Means To A Special Needs Mom Like Me

Karen Quiñones-Axalan
Posted October 6, 2018 from Philippines
A HAPPY BOY
My firstborn son at two years old. He enjoys swimming up to this day.

My eldest son just turned five years old, but he could not speak yet. I am still eagerly anticipating for the day he can call me, "Mama".

Three years had passed when I first heard about Global Developmental Delay (GDD). It is a condition where a child is delayed in at least two of these development domains: cognitive, gross motors, fine motors, speech, and social development. My son is delayed in all of these areas.

When he turned three years old, the doctor said that GDD was just an initial diagnosis of a more specific condition. She said by the time my son reaches five years of age, it will be determined if he has an intellectual disability or if he has an autism spectrum disorder. Those words shattered me that I could no longer focused on my job. I felt the need to resign from work to become his fulltime caretaker.

I thought after undergoing an emergency c-section due to fetal distress, my baby would be wholly well. But as months passed, I observed that he was not reaching his milestones on time. He crawled at ten months, but walked at twenty-one months. He couldn’t point nor wave. He wasn’t as responsive as a typical growing baby would. 

Relying on mother’s instinct, I told my husband, family and friends that I felt something could be wrong with my son, but they dismissed my concern as being a worrier, an overthinker. They told me to relax because my son will eventually grow normally. Boys are often late, they argued.

When my son turned eigthteen months, my husband and I brought him to a pediatrician who hinted that my son could have autism due to his speech delay.  She advised us to have him assessed by a neuro-development pediatrician. I couldn’t control my tears as we headed home. It felt like my heart was stabbed by a knife. 

There was only one neuro-development pediatrician available in the area where we lived. We waited for more than six months to be accommodated. In less than an hour of evaluation, the doctor quickly concluded that my son has global delay.  She recommended that our son should undergo occupational and speech therapies as an early intervention.

We brought our son to a therapist. He told us that our son has a Sensory Processing Disorder. It means his senses have difficulty filtering the stimuli around him. He has a heightened response to taste, touch, sound, smell and vision.  My son also has hypotonia or low muscle tone which made it difficult for him to walk, run, jump and climb up the stairs. The therapy sessions are relatively expensive in our country. We can only afford one kind so we prioritized occupational therapy.

Whatever neurological issue he has, we have accepted him for who he is. We grieved for a while. We had hopes and dreams for our son like he could be a doctor, pilot, lawyer, chef or engineer. But today, we can only hope he could speak and learn to be independent.

Within our family, we do away with labels. Instead, we focus on nurturing him within a positive, loving environment. It is important to us that he is happy.  He loves to be hugged and appreciated for his little contribution at home. However, due to his limited abilities, every single day is challenging.

The moment we step outside of our home, reality hit us to our core. We are reminded how different our son is. In a crowded place, he covers his ears. Sometimes he screams. It must be his way to communicate his sensory overload. 

It dawned on me how difficult it is for my son to be voiceless. He is trapped inside his five-year-old body unable to express his struggles. Countless are the times when I have to guess if he has a headache or stomachache or any internal pain. I wonder what questions he wishes to ask me or if there is something he wants to tell me. I know he tries really hard to be understood, but more often than not, there is this barrier between us that hinders us to communicate with each other well. The frustration of not knowing is excruciating for me as his mother. 

According to UNICEF Philippines, there are around five million disabled children in our country. In reality, there is a few data available to support the claim since children with disabilities (CWDs) who were born from financially-challenged families are not recorded nor recognized because these parents hide their children at home. The Autism Society of the Philippines (ASP) has estimated 1.2 million people with autism. I am personally alarmed by this huge number because I have been looking for other parents who have children with disabilities or autism, but only met those whose children are enrolled in therapy centers. 

These CWDs face the stigma of a society on what is perceived as "retarded", "dysfunctional", "burden", “liability”, "consequence of sin" or "curse". People like my son had to fight hard to be counted, acknowledged and treated better as a human being. In our country, “autistic" is a derogatory remark to someone who acts poorly or behaves in an unacceptable way.

People with special needs are vulnerable to all forms of violence. By default, they are victims of bullying. How psychologically damaging it is for those who could not defend themselves? How can a nonverbal child report a sexual harrassment? Who protects those who are in conflict areas or in evacuation camps? How will a disabled child process the confusion of the recurrent natural disasters our country face every year?  

 

I hope society will be kinder to differently-abled people because first and foremost, it is not their fault they were born with a neurological, physical or behavioral difference. It is not the fault of parents, too. It is already emotionally, financially, physically taxing to raise CWDs. We need support rather than discrimination .

 

Raising a child with special needs is an isolating journey. 

 

Dr. Devon MacEachron, a psychologist, introduced a term called neurodiversity. It is a concept that neurological differences  (such as autism, ADHD) among people should be recognised and respected. She said that neurodiversity might be crucial for the human race just as biodiversity is for life in general. These children have different abilities that might unlock solutions to the world’s problem. Should we force these children to behave in a certain way so they can fit to our environment? Or should we create a friendlier environment to fit these children?

 

I believe I will have peace of mind when CWDs can have access to affordable, if possible free, quality education and health services. I will feel secured when society would promote inclusion, not isolation, and offer opportunities rather oppositions for differently-abled people. 

 

I mustered much courage to write this piece because I'm mindful of my son. But I realize I could protect him more when I raise awareness on his developmental delay. This is not only breaking my silence, but also attempting to break the stigma.

During the diagnosis, I asked, “Why me?”. But an inner voice replied, “Why not?”.

 

Today, I dream for a more accepting, altruistic world.

 

Security for me is living in a society that cares for the special needs community, that they are consulted on what kind of environment they can thrive best to utilize their unique abilities, and that they can be free to be who they are.

 

I dream for an opportunity for me, together with the special needs mothers, to attend trainings on how to handle our children. I want to be part of providing services for them.

 

There is a burning desire in my heart to put up a Center for Development for them, targetting those families who could not afford therapies. I envision organizing a livelihood opportunity for the mothers, and establish a community savings program with them so we do not shortchange the specialists who would handle our differently-abled children. 

 

I dream for the day when a special needs family can relax in public places because we are met by smiles rather than stares, that we are openly welcomed as blessings rather than rejected for being an burdens.

 

I dream that it becomes a norm that the workplace will employ neurologically different people alongside mainstream workers. It will be a collaboration, not segregation, of employees just like how instruments in an orchestra seamlessly produce harmonious music of what is deemed to be a noise but actually rises into a glorious crescendo. Just like how strokes of a wide spectrum of colors blend together to produce a marvelous artwork of what is deemed an eyesore but surprisingly turned out to be a monumental masterpiece.

 

This is my dream because security for me is to live in a world that accepts and supports equality in the midst of disability and neurodiversity. 

 

This post was submitted in response to The Future of Security Is Women .

Comments 15

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jlanghus
Oct 07, 2018
Oct 07, 2018

Hi Karen,

Thanks so much for opening up and sharing your very real, and personal story about your adorable son.

Maybe this is your calling to create the development center/support group for parents and children that are autistic since you know there a lot of people going through the same thing but not talking about it? Yes, I think so, especially if you're so passionate about it. It sounds like a great idea! I love your dream, too, btw. Let us know how we can help make your dream a reality!

Is their a non-verbal language that he can learn so that he can communicate, such as ASL, or baby sign language? This would greatly help all of you.

Hope you have a great day!

Karen Quiñones-Axalan
Oct 08, 2018
Oct 08, 2018

Hello, Jill,

This one is not an easy piece to write. I shed a lot of tears. But I feel empowered as soon as I wrote my dream.

Oh wow, “calling” is a huge word, thank you for seeing that! I will embrace this calling. Thank you for pointing it out. It does feel like this is the direction that I am looking for. It excites me! Unbelievable!

I need to research more. I need a lot of support from all of you: mentorship, encouragement, ideas, resources. One step at a time.

Yes, I have taught him simple sign languages. I need to learn ASL so I can teach him more.

Thank you for acknowledging my dreams and for believing in me, Jill!

jlanghus
Oct 08, 2018
Oct 08, 2018

Hello dear,

You make it look so easy, though:-) You wouldn't know it!

You're very welcome. Listen to your sisters, here...ha:) We've got your back, and want to see this happen for you!

Yay! Yes, excitement. You've got this!

Yep, and yep!

Sounds like a plan:-)

You got it...always!!!

Can't wait to see/hear about the first step, and your progress!

Karen Quiñones-Axalan
Oct 11, 2018
Oct 11, 2018

Thank you, birthday Jill! I will update you for sure.

jlanghus
Oct 11, 2018
Oct 11, 2018

You're welcome, dear:-) Looking forward to it!!!!

Olutosin
Oct 07, 2018
Oct 07, 2018

My awesome sister, the world is waiting for your dream. Domt forget, as we discussed, its so simple. Just start.
I love your dreams but I love your son more.
Hugsssssssss

Karen Quiñones-Axalan
Oct 08, 2018
Oct 08, 2018

Hello, Sister Olutosin,

I am personally encouraged by your trash-to-treasure journey and how you are touching the lives within your circle of influence. Your testimony inspires me, and this is one reason why I am learning to be brave to fulfill this dream.

I am learning from your experience. Yes, I will not forget what you shared.

Awww. Thank you for believing in my dreams and for loving my son.

Hugs!

Sally maforchi Mboumien
Oct 07, 2018
Oct 07, 2018

YOU have been doing it and you can do more. hold on to your dreams. Hugs and love to your son.

Karen Quiñones-Axalan
Oct 08, 2018
Oct 08, 2018

Hello, Sister Sally,

Thank you so much for your support. It means a lot! Yes, I will hold on to this dream.

I am praying for you and all the sisters in Cameroon. Please stay safe. This too shall pass. Hugs to you, too!

Lily Habesha
Oct 08, 2018
Oct 08, 2018

Karen,
Looking at your smiling picture every time i check on WP site makes me smile. I used to think, there's no problem in your house for the time being.
I never know you've a child with special need. I visit some center to support people with special need. I know mother who has a child with special need, it is not an easy journey my dear. But for all the problems, there is always a solution.
May God give you strength, you'll learn a lot in this and make you grow tougher.
But, all will be well with your child, don't worry.

With love,
Lily

Karen Quiñones-Axalan
Oct 10, 2018
Oct 10, 2018

Hello, Sister Lily,

How are you? I miss you!

I still smile today because my son makes me laugh a lot. He is a blessing!

Yes, it is hard. That is why I dream for a Center for Development for the special needs community. They need a lot of support, and their mothers, too.

Yes, there is always a solution!

God has been so good for providing grace and strength everyday.

Yes, sister. All is well. Thank you!
I hope all is well with you, too.

Hugs.

Tarke Edith
Oct 09, 2018
Oct 09, 2018

Hi lovely Karen
Thanks a lot sister for litting us know the conditions of your son sister dear let me tell you abit of the experience l had with my third son , when he was 22 months old that is when he was able to stand up and work as concerns talking , Tah was able to call any name when he 6 years old ,l cried visited many doctors to no avail . but today sister l am happy to inform you that Tah is the best child in my house family and Even my negbours. He is able to do all the house work with no body commanding him , he can spell every word that filters in his ears indeed sister that child is the best in my house . so dear let just think that your son will be like mine just hole on sister God is in control it will be well with you as it is well with me today with Tah.

Karen Quiñones-Axalan
Oct 10, 2018
Oct 10, 2018

Hello, Sister Edith!

Awwwww. Please hug your son Tah for me. That is such an inspiring story. I hope I can meet him.

Thank you for encouraging me, sister. Yes, I believe that what happened to your son will also happen to mine. Yay!

How did he learn to speak? Did he have some therapy? If not, that is truly amazing!

Hugs!

Tarke Edith
Oct 10, 2018
Oct 10, 2018

Hi Kareem
Ideed sister Tah was a testimony in my life ,he started talking when he was force to atent neasury school even though not talking ,so as he interact with other children he was force to talk today he is in form two in the secondary school and is doing very well

Karen Quiñones-Axalan
Oct 11, 2018
Oct 11, 2018

Wow, thank you for sharing, sister Edith. I am proud of your son and to you, too.