Parenting a Child with Autism and Seizure Disorders

My youngest son was diagnosed with Autism Spectrum Disorder, Moderate – with Receptive and Expressive Language Delay (DSM-V code: 299.01) two years ago. I can still remember sitting in the doctor's office and the devped breaking the news to us. Though I had my suspicions, it's still different having them confirmed. 

We got a full-time caregiver for him as I work long hours. I'm thankful that my husband arranges for all the therapies and school requirements. I just show up at the PTC or school activity when asked.

It doesn't mean that I don't know how to take care of my son. 

Everytime his yaya goes on her day-off, I take care of him--whether to feed him or bathe him. I thought we had a system going on until an event took us by surprise just this weekend.

We were having a quiet morning at the grocery one Saturday. I was going around getting our essentials while my son was in another cart. Like always, he had a Tide bar in his hand as he likes the smell. However, I was surprised when I saw him covered with vomit as apparently he threw up. We thought he bit into the detergent bar. So his caregiver took him to the restroom to get him cleaned up. 

A few minutes later, she called me saying that my son looks a bit weak and that we should go home. When I saw them, he could barely lift his head and we carried him back to the car. However, I became concerned when he was unresponsive even if his eyes were open. We then decided to bring him to the ER which was fortunately, just across the mall.

Upon arriving, the guards had to help me carry him inside. When the nurses saw him, they immediately called out, "Seizure", and quickly rushed him to critical care. It was then that I broke down. 

I saw him hooked into whatever machine to monitor his vital signs and an IV was also inserted. In regular days, he would've cried loudly but in that case, there was no reaction whatsoever. I sat down with him and kept on calling him but no response--just wide open and twitching eyes. 

The ER was able to contact our pedia and upon seeing his eyes, we were referred to a neuro pedia who had him sedated. It was a long hour where I alternated between crying, talking to him and praying. I knew he was waking up when he began moving on his own. He said, "help me", when he saw all the things on him and vomited again--probably due to the meds. 

It took 4 nurses to get him cleaned up and transferred to another bed and he slept his natural sleep. From the ER, we were transferred to a regular room where the neuro pedia saw us and an EEG was performed. 

Fortunately, we were discharged a day later armed with lots of information about seizure and anti-seizure meds. 

Seeing my son go through that is just a traumatizing experience. We were told that it's not something to be too worried about as long as we manage the seizures--meaning keeping him safe and that someone should be with him 24/7.

Regardless of the doctor's assurances, I can't help but worry. When my son was diagnosed with ASD, we got him into therapy which would help him to become an independent and contributing member to society. But this impairment is one roadblock which we're not prepared to handle yet. 

I know we'll get through this and that our son will power through. We'll just take it one day at a time. 

My First Tooth Extraction

I'm nearing my 50s and it's only now that I experienced getting a tooth extracted.

The tooth in question was my front right molar which was actually root canaled more than 15 years ago. The tooth finally fractured a couple of Fridays ago. Unfortunately, my dentists aka my sister and brother-in-law have migrated abroad so I had to look for somebody local. I managed to snag an appointment at Affinity Dental Clinics here at Alabang. 

I was very early for my appointment though I assured the receptionist that I was willing to wait. When it was my turn, I was handed a hairnet and lead to a dentist chair by a very kind Dr. Matabuena. She did an initial  examination and said that I already have an infection as manifested by a pimple on my gum. She had an x-ray done and they confirmed the infection and that my tooth was already fractured thus the extraction recommendation.

After drinking a week's worth of antibiotics, I returned to the clinic and I ensured I arrived a few minutes before my schedule. 

The procedure did not take long (barely an hour). I didn't know if they injected me with a calming thing other than the anesthesia but I was too undisturbed considering I just had a tooth extracted and I even saw the tooth (I was tempted to post it here but am now sure how to hide it).

I'm now recovering from the after-effects. When the anesthesia wore of yesterday, I could feel the pain. It wasn't as excruciating as I thought (try suffering through a caesarean birth then you'll know what pain is) but still bothersome that I could only lie down the rest of the day.

I was given three options post-surgery, well four but only considering three:

1. Dental implants which will cost probably the same as my son's tuition fee;

2. Crown or bridge

3. Dentures

The fourth is to just let it be but I won't rest easy knowing and feeling there's a hole between my teeth. 

Going for option 3. 

Be Comfortable with the Uncomfortable

 

When I'm asked by people nowadays, I always say that I'm very happy with where I am and what I do right now in terms of work. It's the hardest job I've ever done and I don't think I've worked and used my brain this much in my entire life. 

I'm also asked why I'm happy. It's because I know that I'm needed and that I am always and I mean ALWAYS appreciated and acknowledged. It's embarrassing sometimes but my boss sang me praises in front of our vendors and other senior leaders have also thanked me publicly for the work that I have done. 

I work almost 12 hours every day and not counting the time I spend to go to work and go home. I have to talk to numerous people and write countless papers where the drafts sometimes gets overhauled by my boss. I meet people inside and outside the office so I can put together the programs that the business needs. 

Regardless of the hardships, I'm still happy and fulfilled. I'm also thankful to my boss as he saw the potential in me. He did not lock me into a role based on my past skillsets but he saw that I'm capable of more things beyond of what I did. For that, I owe him my undying loyalty and I made that pledge to him while walking to a meeting. 

I still have so many things to do and I hope I will be privileged enough to see all of them through. 

Good Fit

I consider myself as a good boss. In my previous couple of jobs, I managed to promote people and make their lives easier. I would think that up to now, my former team still hold me in high regard. Whenever people would leave, I let them go with light hearts because I know that I've given them what I can and it would give me more opportunities to develop other talents.

With my new job however, it's so difficult to find people with the skillset that I need. In the year and a half that I've been with my new employer, I've had one person leave me and looks like another person in the way. According to them, it's the pay. It may be possible that whatever they do is not commensurate to the pay that they're getting. I beg to differ though. I guess I'm just not finding the right set of people.

Since this is a new department and role that was created, it's difficult to really pin down the talent that I need. I need someone who can write well and has an analytical mind. One who can also argue and not afraid to talk to people. Since my background is operations, I know I cannot get someone from my old team so it's either I get someone from within or someone who already has the background on the products that I manage.

I can feel myself panicking once again as it looks like I'll be working longer hours than usual once again to take up the slack. 

Sidelines

It happened again. 

Once again, I was left out from the list of people who were invited to an event. I know I was invited as I received the official notice but when they did another round, I was omitted from the list.

I clarified that I was invited and that I should go. But then, I was forgotten once again. It hurt a lot because it's not the first time it happened. All of the people were there except for me. Hay naku. I give up to think I've reminded and requested so many times. I know where I'm not wanted.

Left Out

I'm used to being left out. Happens even to my own family--where people sometimes "forget" to invite me to some gathering and I only get to hear or know about it when somebody tells me or I see pictures of the event. 

I should be used to it. 

But it still hurts sometimes when I see pictures of events where I'm not invited to but I see people whom I know is there. Makes me think that there's something wrong with me. Or maybe I'm not an exciting or pleasant person to be around. 

I am used to it. 

That I've learned to shut the world out and keep everything to myself. I've learned to "get over" things because I can't seem to open up to people to way I used to; that I can never find a place where I "truly belong".

Should I get used to it?

No? Maybe? Perhaps? Yes? I don't know. The best that I can do now is to acknowledge my feelings and accept the fact that I cannot please everyone and that there will be people out there who will not like me. Maybe because they're just reacting to how I treat them or how I project to the world. I can be aloof and I can be clueless sometimes. Maybe this was just how I coped. 

This is me.

So I guess I just have to live with the version of me and strive to be better and not let these things affect me. I know my worth and I know whose approval and acceptance are important to me. 

They are still my family. They are still my friends. I am still me. I guess I just know where I stand and I am mature enough to acknowledge that. 

Life goes on. And so must I. 

Disconnected

I thought that I was fine being myself when I partially disconnected myself from the world--a by-product of the pandemic in the last 2 years. 

Being an original introvert, I had no problems doing things by myself, whether that would involve eating at a restaurant, going to the mall, travelling and what have you. I only relied on myself and thought that I'm capable and strong enough.

But I feel something is wrong. 

I've lost the ability to feel, like, I'm resigned to a fate where the outcome is something that I do not want. Simply put, I've lost hope.

I began to feel this way ever since the election results came out last May 9. Some would say that it's just politics and life goes on. But I can't just bring myself to live in a world where the people who I trust to run my government lies to my face and gaslights me into thinking that everything is fine and dandy. Worse, is when people get away from twisting the truth into their favor. 

Hopefully, I can snap out of this soon.