Life After NICU

Sensory Processing Challenges, Our Journey Continues

A few things I never thought I’d say:

“James, don’t bite your arm.”

“James, don’t drag your head across the floor.”

and my favorite, “James, don’t lick the tree, (short pause) or the telephone pole!”

Our latest challenge continues to be addressing James’ sensory needs. He has a variety of them, and they seem to be affecting several areas of his development. With so many different opinions on the topic, and such a multitude of activities to choose from, it can feel overwhelming trying to figure out just what to focus on. So thankful to have the guidance of someone I trust as we explore some options and find what works for James.

First Photo in the NICUIt’s not surprising at all that he has some different sensory needs than a typical two-year old. Some of it he comes by naturally. I have a few texture issues of my own to deal with, sorry buddy. And some of it comes from spending more than five months in the NICU. Four of those months should have been spent in a dark, quiet, gentle, floaty uterus. Instead of that peaceful place, he was in an isolette, exposed to loud sounds, lights, and pain. An experience like that is bound to have at least a few lasting effects.

James is the definition of a body in motion. There is no walking, he runs everywhere. He constantly moves and wiggles, even when trying to sit and watch Mickey Mouse. His arms and legs never stop. I understand that two-year olds are busy and always doing something, but this is a different kind of busy. It’s almost like he’s uncomfortable in his skin and can’t figure out what to do about it. No wonder he has so many delays. I can’t imagine trying to concentrate on learning activities when you feel the constant need to move. I know how annoying it is for me just to have a twitch in my leg, and this is so much more than that.

James and NaydiaThen there’s the mouth. Everything goes straight to it lately. Well, everything except food. He licks floors, feet, windows, his swing set, furniture, toys, and yes, trees, and what he doesn’t lick he chews. I think he truly craves the feeling of all those sensations and textures in his mouth. Our job is to find a way for him to meet those needs in a more appropriate, socially acceptable manner. Hopefully we can find a few tricks that work before he starts preschool in August. I’m sure he won’t shock his teachers, they’ve probably seen it all, but I would really like to have a few tools they can use when he starts licking the walls or the rug, or another student. Just the thought makes me cringe.

And we can’t forget his feeding issues. Not sure if they’re sensory or medical or some combination of the two, but our hope is that by addressing some of his sensory needs we’ll see an improvement in feeding as well.

As always, I’m working at keeping it all in perspective. I was reminded over the weekend that he has some really good skills that can be built upon and expanded, and that it’s not fair to compare him to others. Not fair to him or myself because it sets us both up for failure. James is doing fantastic! A glance through some of his NICU photos tells me that pretty quickly. He has come a LONG way and I’m so proud of him. He’s perfect exactly the way he is. Like I’ve said when I wrote about his sensory issues before, I don’t want to change his personality or his little quirks, I love those things about James. I just want the world to be a little easier for him to navigate, and I’ll do whatever I can to facilitate that. We have lots of strategies to try over the next few weeks, then we’ll regroup and see where we are. Maybe you’ve been where we are. What tips can you share that worked for you? And if you’re just starting a similar journey, you’re not alone. We can learn from one another as we go.

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5 thoughts on “Sensory Processing Challenges, Our Journey Continues

  1. Why do I always feel like I am telling you stories????? I hope you don’t mind, but sometimes it seems like I can relate to you in some small way when you talk about James. Please forgive me if I ramble……
    So here is my story for today……
    Our family has friends, seemed like family members we were so close, that has a son that was born premature. I don’t remember how young he was, how much he weighed, but he did spend many many months in the NICU like James. He had oxygen, many medical difficulties, and a feeding tube. Jacques was a middle child at the time. And I remember him having problems with putting things in his mouth……when they tried foods, he would gag as well. But when it was time for everyone to eat, he was the first at the table, he had to have a bowl and spoon and cup just like his older brother. And we couldn’t leave it empty. There HAD to be something in the bowl, something in the cup. When his older brother would put food in his mouth or drink, Jacques would imitate him, pretend he was chewing, pretend he was drinking. It always made us smile watching him because he so wanted to be like his big brother. Sometimes he would “accidently” swallow, and choke, but at some point he realized “hey, this is pretty good!!!” and progress began. Although he still has a feeding tube, he does eat and enjoy food. Just has to have the tube to supplement his feeding. We have lost touch with this family, and haven’t seen them in many years. I believe Jacques is around 17 now.

    So I guess what I’m trying to say is (and I know you will never!) don’t give up. Things will work out just as it is supposed to, at the timing it is supposed to happen. James is always moving…..he is making up for times when he couldn’t!!!! That is how I see it!!!! You are doing a great job and doing the best in every situtation! Thanks for sharing James with us!

    • I love that you share your stories! It is so encouraging to me. You’re right, I will never give up, but it makes it so much easier to keep going when you hear about others who have faced similar challenges and made it through. Thank you so much for telling me about Jacques. We will keep plugging away, one small step at a time.

  2. Our OT has been great to give us exercises to do to help Mason in public. When he is super floppy and flapping and spinning we have him push on a wall or us OR “jump” up and down 10 times (his jumping is still lagging but he tries). Anything to give a stimulus to all his joints and help calm that need for constant activation. Sometimes I carry him around a store with him hanging upside down or do a handstand. Yes, I get some looks, but it helps. Swing, swing and swing some more. I think we are going to put a hammock swing in our house because it helps settle him down. Just keep your mind open to the oddities that can help. It’s humorous at times and I just have to laugh so I don’t cry.
    In a restaurant we are always saying, “quit turning upside down”.

    • I love that you said Mason likes to be upside down. James LOVES to be upside down too. He likes to be held that way and he tries to turn himself that way. By far his favorite position. And swinging is big for James too. These boys need to get together. (: Good advice to be open to the “oddities that can help.” I try not to pay attention to ‘looks’ anymore and just do what James needs, but it can be hard. Definitely laughing and smiling through it all, or you’re right, we’d just cry. Thanks for all your suggestions Jana!

  3. Pingback: Creating a Safe, Sensory-Seeking Environment | 22w6d

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