Meaningful Outcome

Imagine this…

A 4-year old boy, diagnosed with ASD, not vocal but verbal (because he understands simple instructions and although he does not respond vocally, he sometimes comply). He has no skill that could lead to independence. He’s physically aggressive; he head-butts walls, people and throws tantrums when he cannot access what he wants.

My question is, how would you help him? If you were to help this child, what would you do? What would you prioritize?

That boy was my son years ago, 3 years and a couple of months to be exact. If you’ve read my previous posts then you already know our story so there is no need to retype it here. But if not, to make the long story short, we were at the end of our tether and did not know what to do. We needed help.

There are a lot of special needs parents who, at some point, experienced this dilemma. Maybe not as severe or perhaps even worse than us but we’ve all been through that first day of intervention when the therapist, the doctor or the staff would ask, ‘What do you want to happen?’, ‘What do you want to accomplish?’ or ‘What do you want for your child?’

I don’t know about you but my answer was simple. I want him to be able to say what he wants, to be able to communicate. For him to be able tell me when something hurts him. I often joked that our family’s needs are pretty basic, that our happiness stems from simple things. When my son acquires a new skill, saying that we were ecstatic was an understatement (it is true even now). In my mind, at that moment when I was asked what I want for my son, my request was simple. I believed it was something that a professional, with years of experience, could do. I remember the developmental pediatrician commenting, on passing, that it might be a tall order. It nagged at me but I didn’t dwell on it for too long because all I was focused on was the help we would finally receive after years of searching and coming up empty. It never occurred to me that what I was asking for was something monumental and could or would shape my child’s life.

As I’ve stated before, I am taking an online course to be better equipped for my son. I’m learning a ton and it’s not an exaggeration. To be honest, if I could sit still for a moment and gather my thoughts I’d have about a dozen posts, aside from this one, that I think is helpful for other parents to know. It’s pretty basic stuff but not something you’d pick up easily if no one points it out or teach you. Most are potentially life changing, if utilized effectively. This topic stood out most so I’m starting with it but I will try my best and share the rest in the near future, hopefully.

Anyhow, during our recent online meeting we discussed ‘Outcomes’ and one of the students, who I believe works as a therapist, asked our instructor, ‘What could be an outcome for a child within the spectrum, particularly ASD?’ My heart skipped a beat when I saw this question appear in the chat box, I kid you not. The instructor answered it perfectly but before I state his reply let me first explain what ‘Outcomes’ are.

Outcomes are life changes that represent a person’s aspirations, dreams and broad preferences. I won’t dig into details but all of us have this. For example, ‘I want to have a job’ or ‘I want to get married and have children’, for kids it could be ‘I want to be a pilot’ or ‘I want to be a superstar’, etc. In layman’s terms, ‘Outcomes’ are goals that we strive to achieve.

Going back to the question: What could be an outcome for a child within the spectrum, particularly ASD? The instructor replied, ‘It depends on the parents. If you have an individual, within the spectrum, that could decide for himself as to what he wants to achieve, then that is his outcome. That’s what he needs to work on. But if you have a child then it depends on the parents, what they think is important for the child.’ I am paraphrasing but that’s the gist of it and personally, it’s spot on.

Now picture this, a 6-year old child within the spectrum who still wears diaper and bottle feeds. He is enrolled to a day program and goes to extra therapy. In the day program, he is taught to write his name using the ‘tripod grip’, count from 1 to 10, color within the lines, build puzzles and do other tabletop and physical activities. His extra therapy works the same way. Because of this the child learned how to build puzzles, color within the lines, write his name and count etc. but he never learned and was never taught how to use the toilet or eat solid food. Now, is this good or not for the child?

If you paid attention and understood what I’m trying to convey with this post then your answer would be a swift and loud, ‘NO!’ if not or is still undecided then allow me to explain further.

I am NOT saying that learning how to write, count and all those are things are unimportant. They are important. But if you are in a situation like this one, as a parent or a therapist (because this works both ways), wouldn’t you rather teach the child to use the toilet and eat properly? Which of these skills would help him the future? If you are still having trouble then try imagining this child as an adult or maybe a teenager around 15 or 16. If he never learned how to use the toilet or eat proper food how would his life be?

Now this is just an example, there are other situations, in varying degrees and whether we want to admit it or not this happens in real life. Sometimes we lose focus on what we should address first. I’ve seen it happen to other children and I’ve experienced it with my own child. Some of you might be thinking, ‘Ah if you have a bit of common sense then that wouldn’t have happened.’ But that’s just it, this isn’t about having or not having common sense because even professionals suffer this oversight.

Imagine that your therapist, with more than 10 years of experience, tell you ‘Building puzzles and matching will improve his cognitive skills’ or ‘By this age, he should be able to recognize letters and numbers so we will work on that’, etc. and you are a parent whose child was recently diagnosed within the spectrum and have no clue as to how to help improve his life. If this happened, wouldn’t you just nod, take in as much information as you can and leave it to the professional while following up at the house even if your common sense is telling you that what your child need, at that moment, is to learn how to communicate what he wants?

That, right there, is the oversight. Parents and professionals, I’m not pointing fingers, often focus on acquiring skills that are ‘typical’ or ‘normal’ for a certain age group. We follow this ‘guideline’ (for lack of better term) blindly focusing on the big picture without taking into account the small details that could be more beneficial to the child.

The outcome that I want for my son have not changed. I want him to be able to communicate, to be able to tell me if something is hurting him, for him to be able to say what he wants. It is hard, considering my son cannot speak (vocally) and no one ever suggested ASL (sign language) and it never crossed my mind until last year when we went for behavioral assessment at PIECES Child Development Services. There I met Teacher Chai who helped me get the first word out of my son, which turned out to be ‘JUMP!’ exactly on my birthday. All those years, I thought my son was incapable of speech when all he needed was a different platform. We still have a long way to go before we achieve our desired outcome but we are progressing.

Now, I don’t know if I am making any sense or I just confused you but let me just state that this is a person’s life we are dealing with, a child’s life. As a therapist, I think it is our duty to inform the people that we serve as much as we can. It is their right and our responsibility. Intervention isn’t just about teaching skills, it is helping change people’s lives so we have to be vigilant. As a parent, I think it is prudent to educate other parents, to help inform them of possibilities not just for their children but for them, as individuals as well. I am NOT saying not to listen to professionals but always remember that there are times when they could be a little misguided. Being aware is the key to your child’s success. I’ve said this before and I am going to say it again, no one knows your child better than you do. You should know better than anyone what he needs in order to lead a good and a better life. Help your child achieve a meaningful outcome, help him gain something that would benefit him not just for now but for the future.

If you are still unsure of what the hell I’m talking about, then let me just ask you one question, something to think about while reviewing your child’s IEP or something to discuss with your therapist during evaluation/assessment that I think could help in selecting targets during sessions.