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ejaydoeshisbest · 10 days

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What My Special Needs Brother Has Taught Me

I am making peace with the reality of taking care of my special needs brother as we get older in years. For context, I am turning thirty this year, 2024.

I am already imagining us in the future; all grey hairs and wrinkled skin. Our joints aching, and he, whining and complaining.

I will still be preparing his meals because my brother is afraid of hot oil and the heat coming from the stove.

I will spend most of my money on his medicines unless a good government program finally helps to assist autistic elders in the Philippines.

I will still work a decent-paying job to provide for his basic needs and if I have some extra, maybe I could put in a good insurance company and HMO.

My best hope is for him to become independent and find good work on his own, of course. But if he doesn’t, then I have to make sure we both don’t suffer.

Personal Struggles with Accepting Responsibility

If you were to ask someone stronger, more mature, and more resilient than me about the challenges of caring for someone in the family who has special needs, they would probably say that it is a blessing and their personal calling.

They probably would accept the responsibility with pride. If ever they doubted, or feared, or felt moments of weakness, I’d like to think they would carry on sacrificing a major chunk of their lives for the benefit of the whole family.

If you would have asked me the same question some months ago, I would have glumly replied that I have no choice.

For the longest time, I was a weak, self-centered person. I put myself first above others and fled at the first sensations of a binding responsibility, especially if I felt that it was a heavy burden to carry on my own.

For a long while, too, I resented my special needs brother and my parents.

I didn’t ask to be their eldest child who was supposed to support a special needs sibling for the rest of my life. To be fair, they weren’t forcing me, but the passive aggressiveness and guilt-tripping tactic was just as effective.

I thought that my brother would keep me from living my best life, that he would hold me back from so many opportunities and wonderful adventures. Providing for his needs meant sacrificing a lot of my free time and freedom.

Now, though, I have begun to settle into the role of helper or caretaker around the house.

Perhaps it was time. Perhaps it was age or biology or a combination of all three.

It has been difficult. It still is. True enough, it meant a lot of sacrifices; personal time, days off, simple pleasures, creative hobbies, and other projects. But there will be no one to bear this burden but the family members who will remain.

I’m finding the peace in accepting that. But it doesn’t erase the fears I still hold to this day.

My Fears of Taking Care of a Special Needs Sibling

Expenses

Raising special needs children, children with disabilities, children on the autism spectrum, neurodiverse kids, or whatever term one chooses to describe their current situation is more expensive than neurotypical, “normal” children. Some, if not most, need constant supervision for the rest of their lives.

They need different therapies to improve speech, movement, and other behaviors to be functional in a public setting.

Then you need teachers with specialized training to educate them in the hopes that they would use those skills to achieve full or partial independence.

Though my brother went to a specialized school with competent, kind, compassionate teachers, all the expenses came from my father’s pocket, without help from the government. At least, to the best of my knowledge. He worked hard so my brother got the proper education he needed.

Living in the Philippines is hard enough for lower-middle-class families like ours. I can barely scrape by with the meager salary that I had during my last job before I tried freelancing. I don’t feel confident that I’ll have the kind of money that my father had in his youth, so I’m scared that I might not provide for my brother’s future needs.

And those needs will grow more expensive as we both age. That is why I fear our future expenses.

Lack of Government Support

I’m not the type to blame the government for everything, but reading a recent article still showed the lack of progress or any concrete plan for assisting Persons with Disabilities (PWDs) in the country.

The news article stated that there aren’t enough “full-fledged learning centers for learners with disabilities in every locality due to the shortage of health professionals who can assess children with special needs”.

After reading that, I worried that there was still a lack of government support for adults with autism who are capable of working a simple job.

My brother isn’t on the severe side of the autism spectrum, you see. He can talk, and dance, and understand you, just as long as you talk simply. He could still write his name, albeit squiggly. He can understand movies and children’s books. He can understand simple orders.

I am grateful that at least he doesn’t need round-the-clock attention. But I’m afraid that if he doesn’t use the skills he learned in school, he will end up losing confidence in himself, and forget the skills he acquired in the expensive school.

While I’ve read that the popular shopping malls in the country have been hiring people on the autism spectrum since 2016, I have yet to personally encounter actual adults with autism working in the many malls that I visited. I’m not sure the information holds up now.

I don’t know if the Philippines would ever have a professional kind of assisted living program for the mentally challenged or disabled. But it would be a great burden off the parent or guardian’s shoulders if there were indeed competent caretakers to watch over the special needs individual as they make ends meet.

Then again, these facilities cost quite a lot of money. It would be up to the government, along with the rest of society, to share this burden to improve the quality of lives of all. I’m willing to do my part as well.

The only benefit from the government that helped somewhat was the discounts on bills and groceries when I presented my brother’s PWD ID at the cashier.

I shiver to think what would happen if there was no government aid at all. I don’t want to be one of those elderly people I see on the news. The ones who are in their 80s and 90s still taking care of an autistic aging adult.

My Own Physical Health Limitations

My brother is physically stronger than me. Ever since I was a small child, I was a weakling. I remember the years when every morning, my breakfast was thirty minutes of nebulizer and my dinner was a nightly dose of preventive inhalers.

I’m grateful that I’ve grown out of those severe asthma attacks, but no one can say for certain if it will come back with a vengeance. I hope not, for my family’s sake.

Still, I’m afraid that my health could not keep up with the demands of a full-time job, and some side hustles to help with the finances, while also taking care of myself, having a social life, and taking care of my brother.

It feels like I already have a child with no partner to help me.

All this pressure is taking a toll on my mental capabilities as well. If I don’t stop overthinking, then it will only cause further strain and negatively impact my health.

I need to train my mind to become resilient.

Ironically, that is what my brother is teaching me the more I reflect on how to better care for him and address his needs.

What My Special Needs Brother is Teaching Me

Accept Responsibility and Face Reality

I have learned that accepting responsibility and forcing myself to not overthink about the future and every little detail that irritates me takes a load off the mental and physical stress.

Would it be nice for government assistance? Yes. Would it be nice if my parents set up funds for his future? Definitely.

But that isn’t my reality. All I can do is focus on what I can do at the moment. It may not be enough but at least it’s a plan. Plans still count as something.

I also realized that things will get worse if I choose to run away from my problems. For years, I hoped that it would resolve on its own as I faced my own challenges. I hoped that a solution will fall from the sky and save us all. I hoped that my parents would think of something grand.

Again, the reality of our situation is that it won’t get any better if I don’t contribute.

The reality is that my parents are getting more lines on their faces with each season. Grey hairs are growing faster than they can color them. Their skin is sagging.

I feel myself getting older too. I am on the last stretch of my 20s. I better contribute to the family while I still have remaining strength.

That is why when well-meaning people insist that it really isn’t my responsibility to care for my special needs brother, I tell them that I am not comfortable abandoning them altogether. I need to be present to tackle all the problems on hand so that my aging parents would not suffer.

It may not be my fault that I am physically weaker than average and that my brother has special needs, but it is still my responsibility to act.

That’s just acting like a decent human being and as a good brother.

Besides, we’re Filipinos. It’s ingrained in our culture and tradition to stick together. Unless the family is downright toxic, then by all means, cut them off.

Furthermore, I did my years of selfishness. I partied. I played games to my heart’s content. None of it was fulfilling. All of it was wasted hours and days on cheap dopamine.

I had fun at the moment, but the pain multiplied depending on the time I had delayed addressing important obligations.

In my defense, it wasn’t like I was delaying gratification. I treated these simple pleasures as rewards for being an adult. Still, I admit that there was selfishness there.

Lastly, I have no interest at all in starting my own family. I’m happy being single for the rest of my life. I am an antinatalist, after all. Maybe this is the universe’s way of balancing things out.

Build Strength and Resilience

I used to have this victim mindset all the time. But taking care of my brother grants me a new perspective in life.

It forces me to look for solutions, instead of dwelling on problems. It forces me to become positive and helps me access this delusional confidence to survive and to keep showing up for work.

I realized I am more motivated to finish things and stick with my chosen struggles if it means supporting someone else. It makes things worth doing. It gives me strength and purpose.

I’m aware that helping others boost overall mood, but I’m not doing it for that. I’m not helping because I want that surge of positivity.

I’m helping out of love and out of reciprocation for the sacrifices my parents had made.

I'm helping because I have a lot of years to make up for.

Live with Hope

My special needs brother makes me see what matters most in life.

It’s about bringing people together and trying your best to protect them. It’s about sharing the load with others. It’s about giving more than you take.

It’s about living life one day at a time; to be comfortable with the lows and to enjoy the highs. It’s about never giving up and always believing in the power of hope, that whatever happens, we’ll get through this together.

It’s about honoring the sacrifices of my father and mother, cultivating a strong support system, and being a support system in return.

It may not completely erase all my fears, but living with hope manages them enough so that I have the determination to pick myself up every day and continue focusing on the present. And hope that all my efforts will count for great things in the future.

There are no guarantees, I know. But it won’t stop me from working.

Having said that, I’m not going to overwork myself. That in itself is a bad strategy. Balance would be the key here.

Work the hours, clock out, live well below our means, cook healthy meals, and ask for help when needed.

Be Sympathetic

Sympathetic. Empathetic. Compassionate. Kind. Patient.

Helping care for my special needs brother has let me release some of the negativity in me.

With a background in dramatic storytelling and a short stint as a PR writer, one of my major roles was reading and researching all the negativity in the news to hook people’s attention.

Maybe I had absorbed too much negativity that I viewed my life bleakly.

I had become jaded and toxic to the point that I had to be less sensitive to the plight of others to protect whatever pool of emotions I had left, which, ironically, made me seem dull, insensitive, and an emotionless husk.

I viewed my life with crushed hopes and broken dreams.

Now, I am re-learning how to search for the silver lining in each situation. I am re-learning to be more understanding towards hostility. I will still fight back even if it means defending myself and my time, but I am more reflective of such negative encounters.

I understand that we’re all lost, alone, and confused. I understand that we either lash out or keep our emotions bottled up.

Helping take care of my brother, I sometimes see that I’ve wasted so much of my energy on negativity and toxic behaviors. I am learning how to let go.

I would also add that I have a rocky, tumultuous relationship with my father. But the care he provided for my brother humanizes him. I still hate the guy, but I respect his sacrifices.

Conclusion

I still have a lot to learn. Every day is filled with frustrations. But without my brother, I am still stuck being a self-centered, hedonistic individual, afraid to face the reality of the past before it haunts him in his future.

Because of him, I am willing to do my best each day, good or bad, and to have faith that I can overcome obstacles.

Words: Ejay Diwas

Art: Viviai Art

#autism #autism spectrum #special needs #neurodivergent #fears #brother #care #government assistance #philippine government #philippines #filipino #autism awareness #special needs children #autistic adults #love #hope #family

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