Wilbarger. Not to be confused with Wahlburgers the restaurant though it is quite a tastey place to dine at.

gunandahri

For the few of you that read this. God bless you. I really appreciate the support. It has been awhile since I have written for many reasons. The first is that thankfully my audiobook narrator career has been doing so well I formed my own company about 5 months ago now. Yeah me. What this means is I now work 7 days a week instead of 6 both as a mom and as an entrepreneur and also promoting indie authors because I just think what they do is awesome. I even run a local moms playreading group now so I am finding a way as they say. Anyway on top of that, the whole moming thing has really been taking a toll on me not in crushing my artistic bones. LOL! Oh my was I in a rough place when I began this blog 3 years ago I think it was with my career on life support I said. Oh dear. It has been rough with all the pottying issues which I have written about ad nauseum. I imagine I lost a few of the handful of those who read my blog for that very reason. How can this woman constantly write about her pooping issues? Well not mine I mean theirs but I suppose their pooping issues are my pooping issues right? Your response they will get there when they get there and besides its a battle you can’t win. And right you would be about that only I never imagine I would be talking about this when they were almost five. So after seeing a behavioralist advised by their school which did absolutely zero and a play therapist which hasn’t sadly done a whole lot more than that we have gone back to the old potty chart with stickers and well…fingers crossed…knock wood…hands in prayer position…it seems to be working. Oh but to get back to why would I write about such a thing repeatedly because it felt like my life day in and day out. I was surrounded by poop even raising chickens. If you haven’t raised chickens you should know it’s also about dealing with a ton of poop. It felt like everywhere I turned there was poop. Poop poop and more poop!!! I honestly felt choked by it. Happy to say that part of my life seems to be easing a bit. I am no longer washing all of the sheets every morning day after day after day and I am no longer changing them each 6 times so 12 changes of clothes every day. That all started about two weeks ago so I am not counting my chickens just yet. Hah! But once they hatch I will. Honestly though that is not what I wanted to talk about. I know you are relieved right? I am going to address something that I haven’t spoken of in this particular context. Developmental delay.

What the heck does that mean? If I knew believe me I would share. I do know that it is different for everyone and some things aren’t so obvious as others are and some things only come to the forefront as your bears get older. My bears are now 4 and a half years old and I am beginning to understand that developmental delay can also involve sensory issues.  It isn’t just speech and fine and gross motor skills. There can be an emotional piece as well. What do you mean you ask? Well what I mean is that the OT who they now see in addition to their services they receive at school (it was advised by their play therapist (okay so he has helped) when he realized their issues were out of his wheelhouse) will throw big words at you like “proprioceptors” and “vestibular system” and if you are someone like me who considers themselves kind of smart you look at them knowingly while inside you are making a mental note to google these words as soon as you get home instead of asking what those things are because you don’t want to appear stupid. I don’t really do that…Okay yes I do!! Might as well be honest. Anyway I have since learned that proprioceptors are these tiny sensors on the ends of your nerves in the inner ear, muscles, skin, joints, tendons, and other stuff and they are important because they signal to your where you limbs are in space. Your brain takes the info from proprioception and from the vestibular system (it contributes to your sense of balance and where you are in space) in your head to communicate your overall sense of body position, movement, and acceleration. What all this translates to as I have come to understand is that for whatever reason both my bears aren’t receiving the stimuli from their environment so they are seeking it outwardly especially the smaller bear. She throws herself into walls, always has to be climbing over things, starts spinning like a top and just cannot come back down. She is always grabbing for things and almost never completes a task before going to another one. She gets so worked up it results many times in pushing me or her sister or something else. She seems to feel little pain and doesn’t mind that much if her head pounds the floor. She is constantly putting herself in dangerous situations with no regard for the danger like jumping off the top of a ladder instead of turning around and climbing back down it. She is constantly seeking input that for some reason, they believe it is the developmental delay, she cannot sense from her environment. Her body always has to be in motion. Whatever the cause her proprioceptors are doing a crappy job and need some help. We were advised to get weighted blankets and no it’s not, as my husband thought, like being buried under a rock. The blanket is 10% of the child’s body weight and it applies that deep pressure onto those proprioceptors and has a very calming effect. I call them their super soft blankets that mommy got just for them. Shhh don’t tell them what they really are. Needless to say they love them. I also got them swings for their rooms. I know right. I want one of those!! Yep they are mesh sensory swings they call them. They look like hammocks really. The swing has almost a womb effect supposedly and can apply that deep pressure to the entire body. You can see it by the way they sit in it or in my bears’ case the smaller does tricks in it and throws herself around (not quite what I was imagining for those things) and the bigger is kind of afraid of it. Yep..bummer. But it is new so I am hopeful. I even have a therapy brush now thanks to Patty Wilbarger and the Wilbarger method (ah now you see where the title comes from) that I rub up and down their arms, legs and back each night again for that deep pressure. My bigger bear loves it and while the smaller wasn’t such a fan because it means she has to stay still she is now beginning to realize it feels nice.

So back to the sensory stuff. So I talked alot about the one who struggles physically sensory wise and the other…well..she really struggles emotionally. What does that look like? It means total break downs to things that are completely disproportionate to what is actually taking place. It means very high highs and very low lows. It means being such a light sleeper that a pin drops and she wakes up. So much so that when I come upstairs around 10:30 to turn out her light and then come upstairs again around 1am after I leave my recording studio the light has been turned back on. Sigh. Something as simple as a doll dress not fitting as dropping something on the floor. Now understand I know when my bear is tired, hungry etc these aren’t tantrums it is more than that. There have been many tears shed over how to help her and sleepless nights as well. It is heartbreaking to watch your child agonize over something that is so little. My first reaction was, way back before what I understand now to be a sensory issue, it’s not that big of a deal and you are being silly. Looking back I wish I could change that. I have tears in my eyes just thinking about it. I wish I could take back those words and simply just hug her (I hug her all the time so please don’t worry) but even that doesn’t really doing anything when she gets in those places. Like watching her through the isolette in the NICU 4 years ago I feel powerless in those moments that can go on for awhile. Much like the bear that spins like a top the other can cry and be inconsolable for awhile.

I apologize because this particular blog post isn’t very funny but then again sometimes I am not very funny and perhaps now is one of those times. I guess what I want to say with anyone else who is dealing with this is that you will get through it and parts of it will suck..a lot but you will get through it because that is what we do right. We keep moving forward and loving the crap out of our kids. We advocate for them always because especially at this age they do not have a voice to do that. I welcome comments, insights, corny jokes or anything you want to share. I don’t have a conclusion to this or a pat little ending because this isn’t a story this is something that is my life that I am navigating to the best of my ability and working to give my bears everything they need to be the best bears they can be.

5 Comments Add yours

  1. Jennie Ensor says:

    your twinds sounds like a huge challenge! hope you can find time to look after yourself

    Liked by 1 person

    1. Thanks Jennie. That is something I have made it a goal to work on this year 🙂 getting my hair done tomorrow which seems small but its major as it is just time for me not clients, not family just me so i too can be the best mama bear I can be.

      Liked by 1 person

  2. Susan Hull says:

    That’s a wonderful post, Marnye. Our little bears are blessed to have such an engaged mommy. Love ❤️ to all four of you.

    Liked by 2 people

  3. You are not alone! My somewhat bigger bear also has some sensory issues – I thought he had proprioceptive disorder but his pediatrician says it’s more just straight ADHD. They have similar aspects however. He can not sit still, though it’s more of a tic – they’re both sensory seeking behavior though, whether you call it a behavior, compulsion, tic, or anything else. Happily, he’s not dangerous, malicious, disruptive or violent so we can all just accept our little jitterbug. The emotional side is harder to deal with. Many a time I’ve told him “this is nothing to get so upset about” whether it’s the loss of a toy, the end of a tv show or game, or just having to leave the house. But to him it is. Hugs help! It’s nice to hear someone else who’s been there too.

    Liked by 1 person

    1. Thank you so much for sharing this and I am glad you have some answers kinda. It helps right. Wishing you the very best!! And yes I do and will continue to hug the heck out of them both 🙂

      Like

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