Ranaldi Way of Life

SO I have blogged about my journey with Kaelob in the past (I would post a link to it, but I cant find it for some reason). But I haven’t really elaborated on Sensory Processing Disorder.  Recently Kaelob has shown incredible improvement and moments like this:

warm my heart tremendously.  Moments like these do not happen often, in fact they are very rare.  Although he has embraced his sisters more often recently, they are still very rare.

In our house a simple hug from a brother to a sister is a big deal.  I realize that it seems rather typical that a boy would probably prefer not to hug his little sisters, however this is different.  He doesn’t hug anyone.  As loving and passionate as he is you would expect him to come running up and give you a BIG hug…. he will run to you (more like run into you) and allow you to hug him, but he doesn’t do the hugging. Most of the time he just leans into you and waits for you to wrap your arms around him.

As a baby he was a snuggly cuddly little boy.  He loved to sit in your lap and have you rub his arms or his legs gently and he would fall asleep.  He loved to have his head rubbed gently or just be rocked in your arms. He still does. Even to this day he will plop himself on my mother’s or my mother in law’s lap and request demand they scratch his back… and yet he doesn’t like holding hands and would prefer to sit by himself or at least with a significant distance between you and he. Sensory Processing Dosorder is a funny thing because it seems unpredictable the things he likes or doesn’t like, the things he will or wont do, the things he can or can’t handle… its frustrating and exhausting sometimes.

Here is a definition:

Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in,processing and responding to sensory information about the environment and from within the own body (visual,auditory, tactile…etc) For those with SPD, sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organising, problems with doing the activities of everyday life (self care, work and leisure activities), and for some with extreme sensitivity, sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion.

It makes seating arrangements in the car difficult, or limited seating at a dinging room table a challenge.  There are moments where I wish I could have sent ahead a messanger pigeon or that he had a noticeable disclaimer flashing above his head so others knew how to interact with him.  To let people know why he wont look you in the eyes when talking to you sometimes, why he will tense up if you shake his hand, adjust his foot or touch his shoulders (something that happens often for a child in a sport or extracurricular activity). It breaks my heart to see him tense up and know that in that moment he is shutting down. He is not listening to what the coach/teacher is saying, that he is climbing deep within himself and from that point on everything will be difficult….and to know that now I have to explain to this adult/these adults what is going on. That now I have to ask them to do things differently.

**Left: what could have been a nice picture turned into a very comedic picture, but in reality very sad. Kaelob was angry and upset because his sister was too close to him. He was not ready, but we had to get the pictures done. Right: Peytne likes to sit on K and H’s lap without warning. Sweet sweet Kaelob let her sit there but didn’t want to touch her, so he put his arms in the air. I had to pick Peytne up and move her he was so patient but I could tell he was getting overwhelmed with her sitting there and not moving.***

Personal space is a big issue for him. Just getting him to hold his sisters was a big deal. Haylee was a good 5 months and crawling before he even let her near him. He would look at her from a distance but never, never touched her.  Peytne he was a bit more curious about but even in the pictures you can tell, although he adores her…he was not comfortable holding her. Sitting on Santa’s Lap or taking a picture with the Easter Bunny… every single time he balked at the thought of sitting next to them, or on them…touching them period.  He stood far far away and just looked at them, and sometimes talked.  Its more than just being shy. Getting his face painted took a long time to achieve. Even to this day he will sit for a quick simple drawing and that’s it. He doesn’t even look like he is enjoying it, but at the end he is SO happy.

**The picture on the left is one of the FIRST times Kaelob let Haylee near him. It was a very brief moment of happiness and I am blessed to have caught it on camera….and then it was gone. He rolled over, knocked her off and got up off the floor.  The picture on the right is the FIRST time Kaelob held Peytne. He really didnt want to, but was very curious to see her. He loved her but was clearly not comfortable holding her, still isnt. I see picture of friend’s children holding their younger siblings and wonder if he will ever be able to do it too.**

Hair cuts… wow. That is a whole other story. Its not just the vibrations on the razor, but the feel of the scissors or the hair on his neck…the fact that I am in his “space” any of it… all of it is hard SO hard for him. This year as a 7 year old child was the very first time I was able to give him a hair cut without any tears or panic attacks. I have tried taking him to get his hair cut but he panics when he sees a stranger he doesn’t know come towards him with scissors not to mention having to wear the tarp (which would help with the hair on is neck issue if he’d just wear it)….we busted our way through it and he was SO happy with the result, not sure if it will go so well the next time, but maybe.

It makes walking into classrooms or activities, church, playdates, restraunts, stores and even friend’s houses a challenge.  If I can I prepare him for what it will be like. If there will be loud noises, how many people will be there, who will be there and how long we will be there.  When he knows what to expect the noises, lights and activity going on around him won’t be so overwhelming. But if for some reason I am wrong, or it doesn’t play out exactly how I tell him… we have a melt down. Thankfully this last year he has gotten so much better…but it is still hard.  I have learned if I take him into Karate a little late after the first group of younger kids (and their parents and younger siblings) all leave, he jumps right into his class much easier.  If I bring him “on time” or “early” the room is crowded with so many people and the result of him being overstimulated is crazy, uncontrollable hyper-ness and then complete refusal to participate. It breaks my heart when I see him shutting down and crawling within himself because he is overloaded and cant process everything going on… At that point its so hard to help him, a lot of times I am watching from a distance and he has to eventually learn to work through it independantly OR express to his teacher/adult that he needs a moment to himself to regroup.

His class he is in right now at Parke Dale Lane is amazing! One of his subjects in school is Social Skills, yep thats right it is taught as a subject!! He learns new ways to cope with his emotions and his surroundings or positive ways to deal with negative social interactions (if someone says or does something that he doesnt like/understand). His teachers understand him. His teachers believe in him. His teachers care about him.  I cant explain to you how much relief I feel that I have finally found somewhere that he can learn and be supported by the teaching staff rather than attacked or ignored.

SO that’s it. Have you ever thought in depth about how you process sounds, lights, movement, and touch?? It baffles me and amazes me. It exhausts me and frustrates me but I am so glad someone took the time to research it and explain ways to help those of us with people suffering from Sensory Processing Disorder in our lives.

**Some of my favorite moments where he has reached out and been able to love his sister’s captured on camera.**