Sunday, October 28, 2018

At a crossroads


Last year, I received a message on Facebook regarding an article I wrote on Smart Parenting on Special Education options for children with autism. 


This mom was the third parent who reached out to me because of what I wrote. I am always touched by the lengths parents go through just to get answers when on the autism journey. But I am more humbled by the realization that there are so many of us out there who are still struggling to find answers. 

Here is my exchange with Chiara:

"Hi.  I am not sure if you are the same person who wrote a story about (the) struggles (of) finding the right school (for) an autistic child, Ton.  I am a mother of a 7 yr old boy with ASD.  I cannot tell (you) enough (about) my struggles but I guess one parent with an ASD kid would understand another with one.

I am just desperate for my son and willing to give it a try back there if there is a school that fits right for my son’s needs.
Thanks.


Me: Hi. Yes, I am the one who wrote the article in Smart Parenting. 

I looked at your profile and I'm guessing that you are now living in Canada? I am not familiar with SPED services in Canada but I always thought that they were superior over the ones available in the US. I once lived in California and have heard horror stories about the limited resources and services available and how a parent has to "fight" for the right of their child to avail of the government-funded SPED programs. Moreover, private therapy sessions are insanely expensive and so those are rarely an option for most families with a special child. 

I have had that option to move my (now 11-year old) son, Ton, back to CA to avail of public school SPED intervention but have hesitated doing so for a few years now. I have instead found temporary contentment in his current school, One World School (OWS).

Like most good SPED schools in the Philippines, OWS is pricey. Annual tuition now runs at P450,000. This, aside from the private therapy sessions that total almost P42,000 monthly. For now, I'd take this amount over a public SPED program in CA for the following reasons:

1. Love and care from teachers/therapists that I don't think my son can get from their American counterparts. Due to fears of lawsuits, most educators are afraid to hug children or to firmly discipline them. The Filipino touch when it comes to education is priceless. I want my son's teachers and therapists to love him and approach intervention with that kind of caring in mind. 

2. I have the best specialists in the country. I waited years to get slots for the best developmental pediatrician, therapists and, now, school. I can only imagine what caliber my son will have access to in a state-run SPED program. 

3. "Affordability." Even if I pay roughly 1 million pesos annually for my son's intervention, that amount will not come close to what I would have to spend for a good private SPED school and private therapists in the US.

4. Support staff. Because I can affordably hire yayas and a driver here, I can be sure (almost) that my son will always be in good hands. Of course my support staff has undergone autism caregiver training, too, to allow them to better help Ton. 

5. Quality of life. Because I have a lot of help and family here, I get a lot of support emotionally, mentally and physically. There is more time to take care of myself and, consequently, I am a better mother to my children. This is something that would be impossible in fast-paced America. 

I want to emphasize that my reason to keep Ton in the Philippines is temporary. Ever since our autism diagnosis, I have been all-out in our intervention efforts. Right now, I think this is what Ton needs. Until we feel that we have exhausted all channels to help him here, we will stay here. 

Eventually, our family predicts a return to the US; partly because my husband stays there most of the time due to work but mostly because Ton's needs might change.

As he enters his adolescent years, he may need access to more services and opportunities that the Philippines might no longer be able to provide; for example, the opportunity to go to college or to be employed. These are things where the Philippines is still at its early stages. 

Let me know how else I can help you. Best of luck and prayers for your son and family. Hang in there. After 9 years of autism, we are grateful for the beauty and blessing of Ton. Take care."



It's been 3 years since I wrote a blog entry here. During that time, I would catch myself with an idea, something to share. But due to life's pressures (particularly my own), I have shelved any writing, pending the resolution of my own issues. And, if not for my "spring cleaning" of my Notes app, I would not have stumbled across this Facebook exchange again and found the urge to write about this. Because it is extremely timely.

Ton is now 12. Our struggles are different and we are at a crossroads. On the one hand, here we are savoring the security and love that he gets from the best SPED school in the Philippines. But on the other, we are slowly accepting the reality that we have to slowly help him live independently, as he should be when his parents are gone. And that is where America is once again tempting. 

Part of the preparation for the move to the US is training him on
Independent Living Skills like this.

Adolescent and early adulthood autism programs are still in the infancy stages in the Philippines. I envision my son living in an apartment on his own, buying his own groceries, gainfully employed. And, in as much as we could easily just provide for him comfortably in the Philippines for the duration of his life- with a yaya and driver at his beck-and-call, that would be a disservice to him. I don't want him to keep living the rest of his life as a child when he has the chance to experience it like an adult. With disabilities, yes, but independently. Eventually, it seems that we will have no choice but to bring him back to California.

We've also had to keep him busy with
physical activities in preparation for adolescence.

The decision will not be easy. We have three other children, one of which is going to college soon. My youngest daughter has some social anxiety issues. And, most importantly, I still have to sort through a few more cobwebs in my head. Until things fall into place, there is no budging us from our current arrangement. It used to be that Ton ran our world but not anymore. Every family member's wellbeing has to be taken into consideration.


He has weekly archery, running and rock climbing
sessions with coaches.
I've been anxious. I haven't been sleeping well. My mind won't stop playing out scenarios and options. But, one thing I've learned after going through my own emotional, mental and physical struggles these last five years- things play out as they should. There is no forcing things. I will know when the time is right. And it is soon. 

My "forever baby" is no longer a baby.