Walking the special needs caregiver path can challenge even the people with the strongest sense of self to remain true to their core values, beliefs and boundaries. Hopefully, before you became a special needs caregiver, you had time to establish a sense of who you are, what you are willing to do and not do and who you want to be.
But, who are we kidding? Can we even remember that far back? You know, before the sleep deprivation, the adaptive way of life that we now live, the challenges?
Surprise… you CAN remember.
Maybe not right this second. Maybe if I ask you to recall who you were and what your boundaries were before living the special needs life, you won’t be able to give me a description or a list. But, if you come across a situation that rubs you the wrong way, your red flags still go up, don’t they?
Your sense of self, your sense of YOU, your boundaries… they are still in there.
I remember going to an ABA therapy center to investigate whether or not it would be a good path for my son to pursue. To this day I can’t say if ABA would have been valuable because the woman who owned the center sent up so many red flags for me it was like Sheldon from The Big Bang Theory was doing a special episode of “Fun With Flags,” just for me. The first thing she wanted to teach my son was how to curb his behavior to blend in with typical children if they are all in the same room together. I have a strong belief that my son should be able to be who he is. Why in the world would I want such a thing? Additionally, the thought that he could blend in when he is low-functioning and would maybe not get the assistance and understanding he needs terrifies me. And, when I tried to explain this to the woman, she vehemently disagreed with me, saying this is what MUST happen.
No, honey, what MUST happen is that we leave… now.
But maybe your belief system is different than mine. Maybe you want your child to blend in. Maybe this woman’s ABA therapy center would be perfect for your child.
I have to honor that. And so should you.
We all have these red flags that go up when a situation for our child doesn’t feel right. We also have a sense of joy, elation or at the very least a connection when a situation for our child does feel right. And these reactions are connected to your core values, your beliefs, your sense of self.
But sometimes we don’t listen when the flags go up. We know that we should but sometimes a situation seems like a dare-to-be-great one… if only. If you can say a situation for your child (or yourself) is amazing, if only… is the situation really amazing? Or is what is amazing you your vision in your head?
And then we stay too long with the vision instead of the reality when it’s time to go. Has this and does this continue to happen to me, for myself and with my son? GUILTY. Absolutely.
Want examples? How about when you know your child needs a certain kind of therapy but its just not working with that particular therapist? But changing is a huge hassle, you are exhausted and maybe, just maybe, if you keep it up, things will improve. Even though all of your red flags are up because the situation is just not right. Or, you have set a bathtime sequence for your child but no matter how many times you follow it, bathtime is a disaster. You want to go back to wipe downs but EVERYONE (spouse, therapist, teacher) is telling you that THIS is what needs to happen. Your red flags are up – you know that for you and your child its not happening right now, but you push on, against your better judgment, your boundaries, your knowledge of what works for you and your child and what just doesn’t.
LISTEN to the red flags. LISTEN to your inner voice. This is your TRUE self – the one who doesn’t want to, after a hard day at work, all of the after school stuff, dinner, laundry and goodness knows what else – fight a battle over a bath. Deep inside if you know that the bath sequence is not a priority for you in your role as a caregiver, FOLLOW THAT KNOWLEDGE. And when the school asks why you are not following the bath sequence (or toileting, hand washing, whatever), TELL THEM THE TRUTH. It’s not that you don’t want your child to be able to do it. It’s that there is only so much of you to give and right now you want to give in a different area instead of banging your head against the wall when your child is not ready to relinquish bathtime stubborness or fear of water or whatever it is that is making bathtime a living hell.
This DOES NOT make you a quitter or a lousy special needs parent. It makes you human.
Who are you? What is important for you and your child on your special needs caregiver journey? And what can you let go of, at least for now?
The only person who knows this information is you. Listen for the red flags. They will help guide you to be your authentic self as a caregiver and just as a person. And then set the boundaries. If other people don’t like it… well… we don’t have time to worry about that. We have to look out for number one – our children. And then, there’s us. We need to take care of us, too.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!