The Trick is to Breathe

Last Saturday was a doozy. It was tiring day more emotionally than physically.

We had our initial Occupational Therapy Evaluation last Saturday with Teacher Richard at Alres. After two sessions where Teacher Richard observed and played with Noah and after I’ve submitted a questionnaire of I guess was like 20 pages, Teacher Richard created a profile of Noah’s strengths and challenges.

It’s one thing to know and accept that Noah has delays and will have challenges. It’s one thing to see them in paper, all measured in charts with check marks and sad faces.

I held my breath and listened to Teacher Richard. My head was spinning and my heart was racing.

We were in one of the center’s cubicles and I would stand up once in a while to look for Noah who was on the play mat drinking milk and resting.

The good news is that Noah’s social and cognitive skills are all “typical”. Funny how in the world of special needs that this is what we strive for. To be typical, to be normal, to be just ok.

His challenges lay in his sensory processing, which includes auditory. So we need to have his hearing checked again (he is due anyway) because Noah doesn’t answer to his name consistently. He may also have challenges with his sensory processing, which means his reaction to environmental stimuli is either at the low end of the register or the high end. It’s either he needs intense stimulation for him to respond, such as shouting his name to get his attention but you only need to touch him lightly so he’d turn to you. He’s very ticklish and we need to regulate that too. This calls for massages 3x a day and brushing his limbs with a surgical brush so he’d be desensitized.

One other thing, he still hasn’t developed an anxiety around strangers. In other words, hind sya nangingilala although he responds to people he knows by smiling and babbling but if he gets picked up by a stranger, he will just stare but not cry. I’ve always thought about this and figured that Noah’s around so many people all the time that’s why he doesn’t cry around new people. Well I figured wrong.

The goal now is for Noah to catch up to milestones that he has missed. We’ll be working on things that he should be doing when he’s 1.5 years old. One other thing that we have to work with is Noah’s small hands. He has short fingers and a flat palm which would make grasping, grabbing and pinching extra hard.

He was recommended to get OT 2x a week. I wanted to cry after the meeting. My heart was so heavy. I asked Dan in the car if he was worried and he said that he wasn’t and he knew I was. I asked him again at home how he felt and he told me that I needed to steel my resolve because we would have so many more similar sessions in the future.

Noah’s prematurity already means delays but adding the extra chromosome to the picture means well it only means that we have to work harder.

I know that what the report does not measure is who my son is. So just as I have decided before ,our lives will not be determined by what Noah can’t do but what he can do now. We will push Noah to be the best that he can be and provide him with opportunities for him to grow and learn. And for every step forward he makes we will rejoice and celebrate.

I gave myself a good cry, wiped my tears and then set off to play with Noah and David in their playroom.

I looked at Noah and see how far this boy had come. He started PT when he was just 5 days old. I brought him to Alres as a teeny tiny baby bundled in his linen swaddle. Now, he’s crawling and sitting up all by himself. This is just another stumbling block that we have to get over with. I took one look at the report again and found a way to be thankful that the checklist is there for now we know, as a family, the path that lay ahead of us.

Am I worried? Yes.

Am I anxious? Of course.

Am I hopeful? Why shouldn’t I be?

But first I breathe.