It’s hard to know where to begin or if there was something I could have done differently. I keep going back over the last few months, the last year, the last two years really and beyond that and wonder if there was something I did that brought us to where we are today.
We knew this summer that things were different with The Fifth Element. We chalked it up to the “terrible twos”, the new summer schedule, all sorts of things until somewhere in the middle I began to think it was something else. The tantrums, the hesitancy to play with kids she saw daily, the whispering of “no, no, no” until it became screams and frantic pleas to be held so close it felt like she wanted to meld into me completely. The sheer anxiety and desire to be held almost always was more than I could bear. I started watching her behavior more closely, seeing the language delay and all the while wondering if I was being paranoid. But I wasn’t, H saw it too.
By the time we hit her second birthday, dealt with summer road trips that left us exhausted by the hours of screaming in the car, her need to physically shut things out by playing possum or covering her eyes when she saw the ocean for the first time, the need to shut doors, windows, buttons, drawers, it was clear we were dealing with something we hadn’t with the other two girls before.
Tuesday we went for our first round of evaluations for sensory disorder. There seems to be some sensitivity with her hearing too. There is anxiety that is palpable and speech delay. All of it crushes both H and me. I want to fix things for her so badly, to make life easier. At the same time I feel all sorts of frustration because we don’t officially know what is wrong, how to help or how to deal with the guilt I know that I feel over this happening to her. My guilt is tripled, quadrupled over my impatience and exhaustion when whatever this is that we are dealing with keeps us from doing things like easily going to the store, on family trips or just putting on shoes and changing diapers.
I know I need patience for a diagnosis, for her and to figure out how to deal with this all on a short as well as long-term basis but right now I just want to stop feeling like H and I are all alone in this journey. I want to stop feeling like every day is so hard and that I have no idea what I am doing.
Despite it all she still loved Disney World.
Very powerful article. Even if she has SPD she can do wonderfully with a OT. Looking backwards, I wouldn’t be surprised if I was an undiagnosed SPD. I still have some sensory issues that can lead to anxiety. But I have done wonderfully in life.
I’m here if you want to talk.
Thank you. We still need to do that drink.
Sigh – no fun.
Just remember you didn’t do it. And also remember that there is no magic key to making everything perfect. There are strategies, and there are optimum environments, but the irony is that we as parents need to be flexible to figure out what the inflexible kid needs most.
I’m definitely here to be a sounding-board if need be — but every kid is different. 🙂
Oh thank you!! It’s all really new and there is a lot to learn. Part of the frustration has been eased knowing we aren’t the only ones seeing it. I’ll be in touch.
My oldest has sensory issues and anxiety. She’s 6.5 so we’re further along than you and I can’t say I haven’t been on the edge of losing my mind sometimes but with some help and a ton of patience (sometimes faked) she’s doing fine. Whatever this is, you can get through it. But good luck, because I know it’s hard.
(I can offer specifics offline if it would feel good to commiserate.)
Thank you Robin. It’s been challenging and scary. It’s hard when we ate out and things happen and I feel like I have no way to help her or cope. She lived Disney but hated the pumpkin patch. It’s a big puzzle with list pieces is what it feels like.
Please don’t be too hard on yourself. Do the best you can.
You’ll figure out a plan for your family and the best ways to help her. All of you are learning about this together, and it will take some time, and some trial and error. You’ve already taken the first step to get evaluations done, and you did that by trusting your instincts. Make sure to keep trusting them – you know her better than anyone else, including the best OTs in the world.
Hang in there and keep your chin up. You are doing the best you can at the moment. I know you and the doctor’s will figure out what is going on and how to deal with this situation. Just love that little girl and take a deep breath.
I don’t have anything else to add over what has already been said, but I wanted to give you support and good vibes. You’re an amazing mother, and by listening to your instincts, you are already on the way to helping TFD. Mother’s guilt is the hardest thing…