I am writing this post because lately I've felt frustrated at the typical reactions I get to his behavior. And, yes, maybe I am attempting to justify certain things, but I... I don't know. Every time he does something, and people around us cringe or give us funny looks, I just wanna go into this long diatribe about how he is being treated for this and that, and he's working through his "issues" blah blah blah blah. But I guess I feel like, if people knew him, and knew how to react to him, maybe ... I don't know.
So I'm blogging ... not to excuse behavior, but just to tell you why he does it. (I will be sharing this, you can bet.)
Sam's sensory integration issues revolve, primarily, around his proprioceptive responses and his tactile ... dysfunction. For example...
Today at his therapy there was another child there at the same time. This little boy is probably about 10, and is often there the same time as us. Cute kid. Sam likes him. This boy was sitting on one of the swings and Sam tried to get past him to the tunnel. This boy was swinging pretty hard and Sam, misjudging how to get by, was promptly thwacked in the stomach by this wooden swing, complete with 10 year old boy, and sent flying about 4 feet. He laid, on his back, there for a minute. Everyone in the room, waiting for his response, held their breath. Sam said, "Whoa." And stood up and went over to the tunnel. That was it. If it had been any of my other kids, or any child without proprioceptive problems, there would have been wailing and screaming. Sam didn't register how hard he'd been hit. He doesn't register when he gets hurt, and he says "oww" for things like... being brushed with a very soft hairbrush down his arm. His emotions and reactions don't always match what is happening to/around him. This is part of why he craves "deep pressure".
I asked the therapist about whether or not this was related to his constant need to be headbutting, pushing, running into, "hitting" (I put that in parenthesis because his intent is not mean), or jumping. Part of the reason he is in therapy is to stop this behavior. If there is another small child around, and Sammy goes up to that child, gets right in their face, smiles, babbles, and then bonks their forehead, it's not because he's trying to be mean. It's his way of connecting and I KNOW this sounds like I am justifying his behavior, but I know he is not a bully. He likes other children, he just doesn't know how to connect with them. We are working on that. Good thing we are doing it now and not when he's 14. I'd hate to see him thunk the girl he likes on the head... what feels like a shove to us, to Sam, may be like a gentle tap.
At first glance, Sam would seem hyposensitive... his need to be jumping, slamming, etc. and yet he is extremely hypersensitive to certain textures, movements, and sounds. Some of this may be inner ear related... he hates to be upside down. It throws him off completely.
Another part of Sam's problem is his auditory perception. If you ask Sam a question, his usual response is, "yeah". Not because he means yes, but because he knows an answer is expected of him, but doesn't necessarily know what you are looking for. If Sam is in an enclosed space, his closet, the ball pit or bean pit at therapy, the blanket box in our living room, his language is SO different. He answers you with "sentences" and his vocabulary improves vastly. We are planning on getting him some noise cancelling headphones for places like church or where there's loud noise/crowds.
Sensory integration (processing) disorder is all about "finding your place in space". When Sam goes to a playground, he doesn't jump right on the playset, he will circle it and try to figure out how it works, where it goes, where he is in relation to its pieces. Once he does, though, look out! When we are at therapy and he is participating in activities that over stimulate him, or are un-structured, he will look for things that organize him. Help him to regroup... placing the colored tabs into the slots, doing a shape sorter, things like that. His therapist said that it shows how well he follows his own cues, his ability to understand when it's too much and to go and find something more structured to help him regroup.
Our school district, after one meeting with him, wants to test him for ADHD. I explained my frustration about this to Sam's therapist, and she said that she, also, hates labelling children, but that those labels often lead to more assistance for that child. So be it then. I'll let them test him, but I already told them I won't medicate him. I have my own reasons, maybe for another post. :) Sam's therapist agrees with this, and is an advocate for altering diet, detoxing, and, obviously, therapy.
Imagine how hard it would be if you couldn't process when you were being hurt, if the sounds in a room stimulated you to the point that you couldn't speak, if being around a group of people confused and stressed you out so much that you felt the need to crawl inside of a tunnel (literally).
We are doing our best.
13 comments:
>>>Imagine how hard it would be if you couldn't process when you were being hurt, if the sounds in a room stimulated you to the point that you couldn't speak, if being around a group of people confused and stressed you out so much that you felt the need to crawl inside of a tunnel (literally). <<<
While I can process when I'm being hurt, I have a seriously hard time with getting overstimulated with noise and not being able to function. Usually I am just fine, especially if I have something I can focus in on and tune things out. (I have the ability to do that, fortunately.) But there are times where I.Cannot.Handle.Noise. As a mother of 4 kids, this can be a major pain in everyone's ass. But at least I'm old enough to know it and know how to work around it. I can't imagine being Sammy's age and dealing with it. He will view it as completely normal but he won't be aware there is another reality.
I'm glad you're doing what's best for him. And I'm glad you're figuring out what's going on. And if other people have problems, they can suck it. And you can tell them I said so.
Sara, Thanks for sharing. And I KNOW EXACTLY WHAT YOU MEAN. This sounds very similar to some of the issues Paisley has struggled with. She would get really hurt, and not cry, but if she saw a loose string on her arm....FLIP OUT!!! I always say people probably think I am a completely insensitive mother, but it's because I know that when she is flipping out, she's not hurt....she just doesn't know what she should feel. WE had to do a lot of deep massage therapy and joint compressions, brushing etc. Paisley has been labeled ADD so that she can receive services through the school district because the school districts don't recognize or understand SID or Apraxia or any of the REAL issues that these kids deal with and how they affect them. I don't remember how old Sammy is right now, but I know that for Paisley, potty training was even an issue...because she couldn't control he abdominal muscles. And she didn't get appropriate feedback about when she needed to use the restroom. THIS was a HUGE issue for me, because she had to wear pull-ups at school and have someone change her diaper until she was in 1st grade (and she repeated K so this took awhile). I really had to let go of my anger when the teacher would imply that I needed to work harder to potty train her, because quite frankly, she had NO CLUE. Most people will never realize the struggles that you will go through, the sorrow you will feel as your child strives to find their place in the world, or the sacrifices that you make in time and energy to make sure that your child receives the best possible care and treatment. If you ever need to talk, I am so available!!!! Hang in there. You are doing the right thing. And I think a blog is a great way for you to share and unwind!!!
You know I don't have kids, so I'll try to be as understanding as I can/make sense of this.
I don't really think there is anything you can do to allay your frustration in public, or anytime you're around others who don't know Sam. Aside from wearing a sign or handing out pre-printed cards with an explanation. Maybe a short phrase, like, you smile and say, "Sam has a brain disorder." I'm not trying to oversimplify his condition, but find the words that most people would likely understand.
I'll be honest and say that I, as a non-parent, would look at that behavior in, say, the grocery store, and I would "tsk" at the parent not doing anything. Which I *know* is where your frustration stems from. You know that everyone else is seeing "bad parent," when you are absolutely not.
Aside from that, I might agree with the person at school: if they give him a label, maybe it will put him on the road to receiving help. Even if that label is erroneous, at least it says, "This child can be expected to behave certain ways," to those who will have him in their care.
And last, your comment about him being 14 made me think... Do you suppose that as he gets older, say, 14, that you will be able to explain that not everyone sees the world as he does, and he needs to behave like XX in this situation and YY in this one, and he will be able to start taking control of his reactions? Or will he never be able to control his reactions to certain situations, or his perceptions of them? I guess if there is some hope that later on down the road, he'll be able to stop and say, "I should probably not thunk Christina on the head, even though I like her and want to," that that would be good for you to know. That things do get better, eventually, with time and work.
Much love, my friend.
Sara, that was an excellent explanation. I clicked because I am interested in this sort of thing, as I have 2 nephews who struggle with relating to others/their environment. Sammy is such a sweet kid - I only got to be in nursery with him for a few weeks, but I just adored him. I can also remember seeing exactly what you are describing in him - he did really well apart from all the noise and other kiddos, and I had the impression that he was often overwhelmed. My nephew is diagnosed with autism, but his main obstacle has been overcoming auditory perception issues. My sis-in-law dealt with a lot of "control your kid" comments, and while it still hurt, she just finally realized that she was doing her best, she was doing what he needed her to, and whether others recognized that or not was their problem, not hers. Shame on anyone for assuming they know more about your situation than you! He is 13 now, in regular mainstream classes at school, and doing really well. He had a later start at getting the help he needed because they couldn't figure out what was wrong, but he has caught up beautifully. Good for you for being on the ball and being there to do what Sam needs you to! :)
Sara, as an educator I find a lot of frustration with the 'labeling' as well, but your therapist is absolutely right in that it will help him to receive services available that unfortunately just aren't given unless you have the label. And good for you for exploring other ways besides medication to help him, I think there are WAY TOO MANY medicated children that dont need to be if they had parents willing to put in the effort you are and more doctors/teachers/therapists who would find ways to support parents like you. Good luck with everything, it is definitely an uphill battle but good for you for taking it on now and being such a proactive parent!!!
Hey! Just wanted to say that you are one awesome Mom! Sam is a lucky boy to have you as his Mommy! And you have friends and family who think the world of your little family so who cares what complete morons (I mean strangers) think! Hang in there-we love you!
The Highly Sensitive Person by Elaine Aron might be a book to look at. Jennifer and I both are very sensitive people who get easily overwhelmed. Perhaps it's genetic; perhaps it is part of our highly stimulating society.
So, although I don't have any "aww-inspiring" comment- I do want to say that knowledge is power. By sharing your experience at the therapist today your assisting a world of naive strangers to the circumstances at hand (namely me) who are now better able to assimilate and help my own children do the same. I'm so glad your finally able to get answers and solutions that will help sweet Sammy. :)
Sara you are officaly the best mom ever! Sam is an amazing little boy!I am is aw everytime I feel his spirit. Thank you for sharing him with the rest of us!
Thanks, guys! I can feel the love!!!
@Jennifer- That is such a good point, about him not knowing there is another reality. That's why I'm so glad we've got such a good therapist. I can't imagine going through it with 4 kids! :) ...I will tell them to suck it. :)
@Jessica- I know there isn't a lot of recognition for SID and it makes me sad. I know a lot of kids who show certain symptoms and I think there's probably even a lot of grown ups who could use some OT! I know my husband sure could! :D Thanks so much for sharing your experiences with Paisley. I know what you mean about the potty training. Man, we are working on it, but it is frustrating!
@Becky- I have though about making cards! LOL Isn't that terrible! :D I remember my mom had one for her artificial knee for every time she went through a metal detector. LOL! I'd have to have a lot of cards!! "Thunk Christina on the head" made me laugh. I sure hope that by the time he's 14, he'll have grown out of some of it! That's why I'm glad he's in therapy now!! (You know, it's the older folks who have had kids of their own and who don't have any patience for him who frustrate me the most...)
Much Love back!
@Jess- Thank you for sharing about your nephews! I know that with help things will get better! One can never have too many allies!! Thanks, babe!! (Wish you were still in our nursery!)
@Kristina- THANK YOU! That meant a lot to me. Sometimes I feel like there are too many administrators who figure it's easier to just medicate. Nice to know there are advocates out there!!
@Kelli- Thank you so much! I sure miss you and your cute family!
@Frank- I'm gonna go find that book...
@Haley- You are awesome and I heart you big time!!!!
@Sharon- You give me way too much credit! :) Thank you, friend! Love you!!!!
I think you're a great mom and doing exactly what you should be doing.
I can't believe there are other parents out there who give you a hard time. We have a boy in Primary who has similar sensory issues. Even before I knew that about him it was obvious that there was more going on than just a hyperactive, misbehaved child. We have made some modifications to help him and he is doing great.
I agree that labels, while they can be bad, are sometimes the only things that can get you recognition and extra help from the school district. You are going to have to fight to get extra $$$ out of them (even if it is mandated by law), but I'm sure you can do it. It will probably be exhausting, though.
I used to be a lot more judgemental before my nephew was born. He has Aspergers and often acts in a way that others don't understand. My sister has always refused to excuse his behavior because she didn't want him to feel different or to label himself. I think he's way advanced over some kids like him because she has expected so much of him. But sometimes it's so hard for her and for him. He's been in early intervention for a while, but just started seeing a psychologist recently. It's been really good for both of them.
You are a WONDERFUL mom! I'm so glad you are figuring out what makes him tick and what to do about it! GOOD LUCK!!!
Post a Comment