“You can’t, Nina. It’s just for bad boys,” Luke replied with mirth. His attitude seemed half matter-of-fact and half teasing.
Is he serious? I thought. Does he really think that kids only gets to go to OT if they are “bad”? My heart clenched. Or, is he just taunting Nina about the fact that he gets to play in the OT gym and not her?
My eyes studied my children through the rear view mirror and I proceeded to speak in the calmest, most gentle, non-accusatory voice I could: “Luke, what did you say? Do you really think you get to go to OT only if you’re bad?”
And so began a discussion I didn’t even know was needed – one that centered around why Luke “gets to go” to OT and what OT is for:
Luke does not go to OT because he is a “bad boy”. He is a good boy. God doesn’t make bad people…
Yes, Luke may make some “bad” choices at times, but that isn’t even really the reason he goes to OT. He goes to OT because we know his body and brain read messages differently than some people’s do. OT can help him get used to all his senses and the messages they send. It might also help him with some skills he wants to get better at. He is – and can continue to be – a good boy who will continue to go to OT even if his behaviors are good. No need to do anything bad to ensure that OT continues. In fact, good behavior – such as cooperation – can make OT even more fun and useful.
Now, all this was not a one-sided conversation. I asked questions. The kids responded. I expanded on their thoughts. I tried to keep things simple and honest. And, by the time we pulled up to the place that we were headed to after OT, I was comfortable with how the chat had turned out.
However, a couple of weeks later, I began to feel uncomfortable again…
Questions About the Kids and Therapy
We were scheduled for a back-to-back Behavior Monitor observation appointment (basically, when someone akin to Supernanny comes, watches and takes notes on our home life and itneraction for two hours) and a Wrap Around Team Meeting (a meeting with a Care Coordinator, Daddy, me and three others to check in on how our care plan and goals for Luke are going.) When I let the kids know there would be someone coming to sit with us and then some more folks coming to chat, Luke asked, “Are they all for me?”
I could not help but to wonder: Does Luke really understand why he goes to OT once a week? Does he understand why we a Behavior Monitor and a Behavior Specialist have been coming to our house regularly? What does he think about the other two folks that come for the Care Plan meeting? And, if we add in Counseling and a Neurodevelopmental Pediatrician or Social Skills classes into the mix, as have been recommended, won’t that be just a little too much? And, how about Nina? To what degree does she understand all this Luke-focused stuff? Is she feeling short-changed that all these appointments and meetings keep happening for and about Luke, not her? Moreover, do Luke – at not even six – and Nina –at just over four – even need to understand these things? And, if so, to what degree?
What the Kids Think
After a few more brief discussions and experiences with Luke and Nina some of the answers to these questions began to take shape:
- Does Luke really understand why he goes to OT once a week? To some degree, he does. He thinks it’s a “place for kids and adults to learn all fun stuff, like how to swing and go super high like Buzz Lightyear” and that he goes for his “sensory diet” which means he has “sensory issues” and “react(s) to senses in a different way.” But, he does not really get in what different way and he also thinks Nina does not need OT because “she’s more loving and compassionate” than he is. (Yes, all the quoted words are direct quotes from Luke and make me sad to think what he overhears and how he synthesizes some things.)
- Does he understand why we a Behavior Monitor and a Behavior Specialist have been coming to our house regularly? No, he thinks they come “because I (meaning Luke) am mean” and that he is not really a mean boy, but has mean behavior sometimes and that the behavior folks can “help find out ways to help it because they’re here for behavior, right?”
- What does he think about the other two folks that come for the Care Plan meeting? He thinks the people that come for the Care Plan meetings are here for the “same reason…for me (meaning him, Luke)” and he is glad they come “because they help me with behavior and stuff like that. However, when I asked him if he wants better behavior, he said “uh ah, no”. Why? “Because I like their cards”. (One of the behavior people brings cards that Luke likes to play with sometimes. It’s pretty clear to me that Luke thinks that if he keeps improving with behavior and regulation, he will lose out on some fun. Not so and uh oh! Got to get on helping him reframe that one!)
- And, how about Nina? To what degree does she understand all this Luke-focused stuff? Is she feeling short-changed that all these appointments and meetings keep happening for and about Luke, not her? Nina pretty much echoes any statement or sentiment Luke makes, and, unfortunately, has been mimicking Luke’s less desirable behaviors and habits. There has been a lot of acting out and tantrums on her part lately, especially when the behavior folks are here. (Truly, we sometimes wonder if they should be here for her instead at this juncture. Luckily, they are a family-focused service!) Our suspicion, which has been confirmed by her actions and comments, is that she is feeling short-changed and that she really wants to enjoy the OT gym, too. She has rationalized that if she behaves badly, she will be able to go, too. (Oh, the conversations, explanations, strategies and reinforcements that lay ahead for us and Nina…)
Moving Forward with Therapy
- If we add in Counseling and a Neurodevelopmental Pediatrician or Social Skills classes into the mix, as have been recommended, won’t that be just a little too much? For me, yes! But, I will keep adding to, subtracting and tweaking therapies for Luke – which currently include OT, behavior modification, care coordination and home sensory diet and OT stuff – as needed. My ultimate goal is to offer all my children whatever they need to best develop and use the gifts and talents that God gave them. I truly believe that the way each child is made is a gift and like some unexpected gifts, I am just trying to find the best way to accept and enjoy all that each of my children is.
- Do Luke – at not even six – and Nina –at just over four – even need to understand all these things? And, if so, to what degree? This one, I still debate over. At the moment, I am simply praying that God graces me with the guidance and the wisdom that I need in order to offer answers and strategies as I should – lending the “right” amount of explanation, understanding and temperance to the “right” kid of mine at the “right” time.
Of course, I am planning to ask Luke’s occupational therapist if Nina might join him in the gym at one of his upcoming appointment, or to find some equally desirable “just Nina” option to quell the envy. Ideas for this are welcome!
I am also marveling at how therapy seems to beget a need for more therapy – or at least more reflection, discussion and tweaking of which child needs what the most at any given time. For it seems that with each need that is met, another one seems to arise.
I guess that is what parenting is about though – navigating needs and offering enrichment in order to best guide children on the journey from being the individuals they are born to be to maturing into the adults that they have the potential to become. Special needs or not, every child is unique and requires caring, thoughtful attention and unconditional love. My biggest goal for myself as a parent of three beautiful individuals is to always see each for who they are and to love them accordingly. For, when it all comes down to it, therapy can be defined as a “treatment for an illness or disability” or as a “healing power or quality.” The therapeutic value of unconditional love covers it all!
This post has been written as a part of S-O-S Best of the Best (BoB), Edition 9: Therapy, which will go live on the 15th. Be sure to pop over to BoB to read about such things as:
- the initial stage of discovering a child has a special need and parents reactions to the realization that therapy is necessary
- the guilt-inducing situation some parents face if they feel they cannot get children the “right” therapies
- how children make varying degrees of progress in therapy
- discussion on how one might know therapy is “right” or being implemented correctly
- if therapy really makes a difference
- what kinds of therapy are available and what the potential of them is