If you want to see a mother fight fiercely for her children’s needs, just take a look at my older sister – whoa. She is the ultimate advocate for her kids. I’ll take a small amount of credit for providing early training ground. Family legend has it I refused to talk to anyone else but her and I would whisper in her ear something only she could interpret. She would then spring into action, ordering people around and telling them what I needed. Bossy Pants. But it served her well, because when it comes to her four children and their needs …whatever the issue, just step aside. She reads, she researches, she consults with every expert and looks under every rock to see where she can gather more information. And when she formulates her opinion as to how each need should be addressed, she works with clarity and does not waver. Bossy pants in full effect.  (Just to be clear, my brother-in-law certainly plays a role as well…I got you J.)

From the moment Amichai was born, and even more so since the moment he was diagnosed, I tried to take a page out of her book. I read, I researched, I consulted with experts, and I looked under every rock to see if there was more information to be gathered. I wanted to be on top of the latest treatments and therapies. No doubt, this was an important step – one that I continue today, but in my initial haste – I skipped over the most obvious place to start: Amichai. Before diving into the studies, I had to first study my kid. I had to understand what his needs are not only from a CP perspective – but simply what his needs are as Amichai.  And when I got to know Amichai, when I got to get him – I had a deeper comprehension of how I needed to advocate for him.

I thought the focus of my advocacy for Amichai would be relegated primarily to dealing with his CP. That’s mostly accurate. I’ve always looked at Amichai’s work with his therapists as a partnership of three. I try to provide them with insight into his personality – what motivates him, what bothers him, what excites him, what challenges him…I also do not hesitate to give my opinion about what methods work best on Amichai. In my experience, any good therapist will welcome this information. Parents know their child best, and so as much as I rely on them, they also rely on me to ensure the most success. We evaluate and modify together.

And the truth is, I feel confidant advocating for Amichai in this realm. I come from a world where I understand how the body works. My own professional works requires that I sometimes work closely with PTs to better help my clients. I understand what effective training is and I understand the ins and outs of all the exercises Amichai needs to perform. I understand how and why his hips need to be supported when he climbs up a ladder and why it is important to rotate his forearm out (supination) when stretching. I speak the same language. I get it, and I think – without getting too philosophical – it is perhaps one of the reasons Amichai was given to me. From this vantage point, I was meant to be his advocate.

The thing is, Amichai has other needs…needs that don’t always fall neatly into my comfort zone. Most pressing on my mind these days is helping him develop coping mechanisms that a child of divorce will inevitably require. Even in the most amicable situation, I imagine children will still experience the stress and tension that comes with their parents splitting up. And right now, Amichai is noticing that and experiencing that. He needs to develop his own methods of management.

I wish he didn’t have to do this. I didn’t want this for him… but the alternative of staying…I didn’t want that for him either. Maybe leaving was my greatest act of advocacy. I keep those thoughts in the back of my mind now as the suggestions mount on how to tackle this issue. There have been ideas put forth by Amichai’s school. I am grateful for their help and attention, but even by their own admission they seem unsure of how to proceed, what path to take – how involved should they even be? They need to maintain a delicate balance of providing care for Amichai but also not bringing matters outside the school into the school. I have nothing but high praise for them and the dedication they display toward Amichai every day – but perhaps this is not the venue to address this specific issue. These are all topics of recent discussions and ongoing meetings.

What I am certain of is my role in all of this. Over the past few weeks, I’ve had various conversations with staff members at Amichai’s school. I surprise myself with the level of straightforwardness with which I speak. I consider myself assertive, but not pushy. I am a confident person, but never cocky. I have a voice – yet, I don’t need to be the loudest in the room nor do I care to be. But with Amichai – and specifically on such an important issue where we are talking about the emotional welfare of my child – I’m leading, and I make no apologies. I’ve realized that my comfort zone is Amichai. Whatever the subject matter, I feel confident in my ability to make the best decisions for him. No doubt, it’s a heavy responsibility, but I wouldn’t want it any other way… because I know him, I understand him, I get him. I was meant to be his advocate.