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Friday, July 11, 2014

Momma Bear and The Sensory Kid

Miracle Man has always had sensitivities and "quirks". For instance, the textures and temperatures of foods affect whether or not he will eat them.  He refuses to eat chunky or chewy foods, but likes softer textures.  So, I can get him to eat hummus and guacamole (I know, right?!?!), but I have a hard time getting him to eat avocados, beans, or apples.  He will eat smooth yogurt (even plain greek), but if it has real fruit in it, he won't even let it get past his lips.  If one smidgen of chunky food gets in his mouth, he spits it.  Right. Back. Out.

When he was much younger, I could not vacuum the living room or turn on any appliance that sounded anywhere near  as loud as a vacuum.  If I did, he would start shrieking and screaming his head off. It scared him to death! So I used to vacuum around his sleeping schedule. Luckily, most of the time...if he was sound  asleep...he would continue snoring away and I  would be able to get the crumbs and dog hair off the floor.

It could get tricky, though, on days when I needed to vacuum several times throughout the day...instead of only  during naptime. You see, we had this rug that seemed to magnetically or cosmically attract every.single.speck  of dust in the entire  house, plus the neighbor's house. Tragically, it used to need to be vacuumed sometimes up to three times a day! With Miracle Man's sensitivities, if I needed to vacuum while he was awake, I felt like I was      tOrTuRiNg      him.  He would scream and cry hysterically, and it was extremely difficult to soothe him. Typically, when he was upset like that, he wouldn't calm down for at least an hour.  So, as a busy mom already strapped for time, sometimes I had to choose between keeping the rug clean of debris and the meltdowns that ensued, or letting go of the mess and keeping Miracle Man feeling "safe".

As the vacuum-phobia-screaming thing continued, it also escalated.  There came a point that whenever Miracle Man even saw  the scary-loud-sucking-up-apparatus, he would fffrrrreeeeeaaaaakkkkkk out...before I even turned it on!! We needed to find a solution so that I could vacuum with Miracle Man around.

So, with the help of his therapists, we tried to desensitize him to the sights and sounds of this machine that I , for one , am in complete awe of.  I must digress here for a moment because this is a topic that I think about all.the.time...I absolutely love vacuuming!  Well, not the actual lugging around, sweating, hard work part of it.  But, I am always fascinated by how AMAZING that invention is!  I mean, whoever came up with that thing is like my BFF for life!  I marvel at its awesomeness whenever I plug it in and begin sucking up dust, cheerios, powdered sugar, cat fur, cat puke, crazy loom bands.  Ooooo!  I love ,  and I mean LOVE vacuuming up those !  It gives me this twisted sense of satisfaction to just...zooooppp them up!  Gone!  No longer all over the floor!  Hehehehe!  (insert evil grin here)  You simply cannot deny that the vacuum is totally AWESOME! 

Anyway, back on topic...so to desensitize Miracle Man, we would have him in one room with the therapist and me in another room with the vacuum.  We would start by telling him that I was going to turn the vacuum on and then gradually bring him closer to me.  Each time a therapist was here, we would work on this, getting closer and closer to me, and then finally bringing him into the room where the vacuum was. In the beginning, we also would cover his ears when necessary. Over time, we would have successes, and then failures. But for the most part, the desensitizing worked. I was once  again  able to turn on my fav machine and go to town on those dust bunnies, dried up pieces of scrambled eggs, bits of pizza crust, Lego pieces (sacrilegious, I know), you name it!

We were so successful, in fact, that for quite a while now, Miracle Man has been able to handle the sounds of things like the vacuum or the blender like a champ, especially if I preset him (tell him ahead of time that I'm turning it on). I usually also preface it with a countdown of three so that he knows exactly when the noise will begin.  But our success was so profound, I could even vacuum right.next.to.him! 

Over the past month and a half, though, he is having a tougher time with his sensory processing. He is back to screaming and shrieking when the vacuum is on.  And it seems like every day, Miracle Man is having a harder time with noises. He has begun covering his ears for every loud sound he can hear, like the garbage truck going by while he is outside.  And while he is covering his ears, he is telling us, "Loud.  Loud.  Loud." 




Too, we just got a door alarm for the house because we're worried about the kiddles finally escaping to find a better set of parents. Naturally, whenever the alarm goes off, Miracle Man covers his ears and says, "Horn. Horn. Horn." It takes him several minutes after the "horn" is done before he stops covering his ears and he can move past the disturbance. His hearing (or his processing of what he hears) has gotten incredibly sensitive! 

On Father's Day weekend, we tried bringing the whole family to the fireworks.  Big MistakeBig. Although we had anticipated some  anxiety, we weren't completely prepared for his reaction.  He shrieked and screamed so badly that it was clear to us he was being Harmed.  We kept trying to move away from the blasts of beauty to find a better place to be; a place where he couldn't see the lights.  We ducked behind a tractor trailer next to the midway of the town fair we were at.  He continued to scream, and he looked...Terrified!  We covered his ears and moved still further back. Now, you should know that when Miracle Man has a seizure, his eyes get all funny-looking and his pupils dilate.  His eyes just look so...different . It makes him look like a different child. Well, at the fireworks that night, he started to get "that look" all over his eyes. We were very nervous, and he was so distraught, that we ended up heading to the car.

Safely inside the car, the booms and bangs were muffled, and the lights were hidden from view.  Miracle Man began to settle down a bit, but he was still fretting.  It was very scary to see him like that. And even though I had anticipated him having a hard time, I didn't expect him to freak out quite so badly.  My nerves were shot.  Momma Bear had had that fight or flight reflex.  It took a long time for the adrenaline coursing through my body to subside.  I have since decided that we need to get him a pair of those sound-deafening ear muffs.  We will probably also use sunglasses when there is so much visual stimuli in the future, as well.  But, man!  Times they are a changing for our family!

So, the next day, we were headed to a car show and Prince Charming wanted to wash our car before going there. We brought it into one of those automated car washes, and within seconds, Miracle Man was having the same expression on his face and that same shrieking-screaming-I'm-terrified reaction. It was so bad that I had to get out of my seat and climb into the back seat with him where I could cover his eyes and his ears to block all of the sensory stimulation. Again, he had that same "look" in his eyes that he gets during a seizure.  And again, there was a very worried momma.  Naturally, once we exited the car wash, he calmed down.  It took quite a bit longer than that for his momma to calm down~especially since it was the second day in a row! ;)

It seems these episodes are becoming more and more frequent.  For example, we recently went out to an old-time ice cream shop. There was a painfully long wait with the kiddles, and then it was finally our turn to be seated.  The waitress brought us over to our table and above our table was a fan. The way the fan was positioned, it broke up the light on the table that was coming from the lamp next to the fan. This setup created a strobe light effect and, once again, Miracle Man started to "freak out".  I thought he might have a seizure.  Luckily, I spoke with the couple who had been seated next to us at the same time.  I briefly explained the situation and they had no problem at all changing tables with us. We were very  grateful  to them!  We were able to sit and relax a while. And we definitely enjoyed our marvel-licious ice creams from the safety of our new booth!

Now, it's not just his hearing that has become super-sensitive.  So has his sight.  The lights in our house that didn't use to bother him at all, for instance, suddenly do. One morning we laid him down on the living room floor to change his diaper, and the light overhead was bugging him.  He was starting to get upset to the point where we had to turn off the light to complete the diaper exchange.  There have been several other "insignificant" moments where Miracle Man has reacted to lights lately. But none of them interesting enough to continue this paragraph. So this paragraph is done.  The End.  (I feel like a second grader. Lol)

I have always felt like I've been on hyper alert with Miracle Man. But lately, it seems like I have to be much more aware of sounds and lights and things that could upset him. That also means that bringing him to things like the movies is not likely to happen anytime in the near future. As I said earlier, I will probably be getting the noise-deafening ear muffs sometime soon, but in the meantime, I have to be very vigilant about what he is exposed to that might set him into a panic.  I am also anxiously awaiting a return phone call from his neurologist to see if he has any more input for us.  Until then, I am Momma Bear and I wait in the forest...watching from afar (but not too far), allowing him to navigate his world with some independence, but ready to attack those lights and sounds at a moment's notice!  RoAr! 


Yours from the Forest of Mommyhood,

Marathon Momma

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