What is it like to raise a child with a motor disability?

When you find out your child has a disability, fear first arises and questions arise, such as, "How am I going to do it? Will I be fully capable of carrying it out despite all the obstacles and difficulties? "

But then you're certain that your child is the most beautiful and important thing in the world and that you'll be with them for the rest of your life. Affection is the most important thing, and love for a child is unconditional.

Once we sort out the emotions we impact with the reality that we live in a world that is not yet fully adapted. That the costs of maintaining their quality of life will be high, that personal comforts and projects will have to be sacrificed to support them, and that perhaps not everyone around us will be willing to help us.

While people who have children with disabilities face a daily battle against all kinds of obstacles, they also receive enormous rewards of love and empathy. We leave you with some of the realities of raising a child with a motor disability in today's world.

Procedures: How to deal with bureaucracy if you have a child with a disability

Once the child is diagnosed, it will be time to put our emotions on hold for a moment so we can quickly guarantee them access to a better quality of life by obtaining help from the government, health insurance, and/or organizations in the country where we reside.

When it comes to subsidies and/or access to materials such as wheelchairs, walkers, special beds, and therapeutic products, some countries are more organized than others . They have clearer or more confusing administrative processes, and more or less paperwork will be required.

To avoid delays and misunderstandings, if government agencies don't respond quickly due to bureaucracy, it's advisable to seek advice from other parents with children who have gone through similar situations so they can help us.

Nobody is to blame, working on emotions has its process

In an interview with El Mercurio, Sonia Castro, mother of Rocío, a 15-year-old girl with cerebral palsy, confessed what she felt when she received her daughter's diagnosis :

"It's a very complicated grief, because your daughter is still there. But your dreams, the image of the children running in the yard, are gone."

Time passed, and Sonia felt like she was isolating herself from everything. Her daughter was already 7 years old and her negative thoughts continued.

“I was 27, but I felt 72. I was devastated, with severe bouts of vertigo, back pain, and not a day went by without a headache . I had breakfast with paracetamol. I didn't sleep at all. And I asked myself, 'Can I last another ten years? No, not one.'”

That's when she decided to rethink her life and dedicate her full time to her daughter. Rocío's father wasn't part of her upbringing, and she decided to accept it that way and move on. If she wasn't okay, neither was Rocío .

Sonia focused all her pain on activism for inclusion, channeling her energies there. She's currently a blogger for a site called Mamá Terapeuta (Therapist Mom), where she connects with and gives advice to mothers who have gone through or are going through the same thing as her .

Here we tell you the story of Sonia Castro and her daughter Rocio , who has cerebral palsy.

Parents and families of children with disabilities go through several stages , and the way they resolve their feelings until they stabilize will vary.

Some may focus on something spiritual, others may seek psychological help or take refuge in faith. It won't be the same for everyone, and going through fears and doubts is completely understandable in these cases, and any positive activity helps a lot.

How to give a child with a disability the best possible future?

We tend to project the best future for our children, so it's very hard to hear that the person you love most in the world will struggle in many aspects of their future life and will have to work three times harder to achieve their goals.

However, it won't always be like this, because like every process, it will be hard at first, but then things will settle down and having a child with a disability will make us understand many things , it will even make us want to change the world to make it more inclusive, more fair, with more rights and equitable for all.

Advocating for integration and equal rights and opportunities is one of the most useful tools for changing things for the better. No one is eternal; we won't be in their lives forever, and leaving them a well-adapted society is an excellent legacy for future generations.

Raising a child with a disability will also mean hearing expressions like "retarded," "handicapped," "differently abled," "a special person," "God's children," "angels," "people with problems," and so on. The reality is that not calling things by their name demonstrates a lack of empathy and cultural understanding.

Containers, cups, and pots have different abilities. Special are superheroes who have superhuman powers. Something disabled means something lacking in value , and we know that every person has value.

Retarded and retarded are horrible and insulting ways of referring to someone, and even a person with a motor disability does not have intellectual problems , and we all have "problems", unfortunately.

Refuting prejudices with dignity and wisdom will be a way to better confront them and make them easier for a growing child. Speaking up, speaking out, accepting oneself, and daring to take on personal challenges are all part of growing up and adapting.

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How to deal with social shock?

As stated above, we are not eternal, nor will we be with them 24 hours a day. However, their personal growth and development will not depend 100% on their will, nor on the effort you as a parent put into raising them.

Your personal development will also depend on society, state policies, current rights and the fight for new rights , as well as the environment in which you operate, the economic reality, and many other factors that are beyond our control but that we will try to address no matter what.

Is today's world sufficiently adapted for people with disabilities?

It is true that in addition to dealing with a host of personal issues, our son will also have to deal with building, structural, urban and architectural issues .

And while there is growing awareness about the integration of people with disabilities, it's not just about inclusive elevators, designated parking , or special seats in movie theaters.

This also includes the condition of sidewalks, the use of wheelchair ramps, and accessible furniture, such as ATMs, public transportation, and vending machines .

Inclusion means that people with mobility disabilities CAN BECOME INDEPENDENT and that no one necessarily has to drive them. They can move around cities alone, without impediments, because they are also designed for them, for everyone.

What will their personal development and independence be like? Is it possible?

Having a child with a motor disability achieve independence, develop their professional and emotional interests, and feel fulfilled and integrated into society is one of the greatest achievements a parent can have.

It is also a social achievement, as the system has ensured that this person can develop with the same opportunities as others without disabilities , whether in school, at university, in public spaces, or in their personal life.

But the achievement will also largely be our children's, who have fought against adversity and never given up.

What we want to express at Theramart is that it is fundamentally society that must change and adapt , not people with disabilities. Diversity combines points of view, lifestyles, and approaches. It makes us more tolerant and supportive.

Raising a child with a disability is just like raising any other child. It means being proud of their achievements, big or small. It means wanting them to be happy and able to explore the world alone or with others. It means wanting them to be free and able to CHOOSE, without obstacles.