How do you imagine a “normal” childhood? I’m willing to bet that when most of you think of kids, the ones that grab your attention first are the loud, obnoxious, very active, sticky fingered little monsters, or the opposite extreme of an easy-going, gentle baby-faced angel (your reflection may depend on if you are a parent or not). Birthday parties, Christmas, holiday festivities, sleepovers, fairs, vacations, babysitters, family gatherings, making friends, even learning how to ride a bike, are just some of the things that may stimulate fond childhood memories for most of you.
Sensory Integration or Processing Disorder is a neurological disorder that is like a virtual traffic jam in the brain. The information from all seven senses are misinterpreted, which causes a person to often act inappropriately. “normal” Automatic responses do not come automatically for people with SPD. they have to cognitively translate in detail every experience they have, one at a time, catch and decipher the misinformation and then override the old stored information with new updated data. This is cognitively exhausting and leads them to feel overwhelmed.
Allow me to give you a brief snapshot in the life of someone Living with Sensory Integration Disorder(Me, the Author) that will be elaborated on. Although my exposure to the above stimulation was similar, those same experiences touched my life very differently.The childhood memories I have, had to do with listening to others processing my behavior. I often heard people say, “Why isn't she like a normal kid?” “Why is she so quiet?” “Can you pick up your child, she is being weird?” it was all quite devastating as a child to realize i was different from other children my age. Group gatherings were, and still are overwhelming for me. Many different conversations in one small space with different voice tones, volumes, and facial expressions become unbearable. Hyper, obnoxious, loud, misbehaved and disrespectful outbursts in an isolated area from kids, teens or adults cause me to feel extreme panic because I can't escape. This is why gatherings that are not controlled are nauseating and an experiences I try to avoid.
When I was little, my mother would often find me hiding in quiet corners, or changing rooms, terrified, and not comprehending the world around me. Growing up, I absolutely hated being forced into situations with people, Family or not. Every Christmas was mentally, emotionally and physically exhausting. I would be so scared and tense that I would get physically ill. The first day of school, or after a long break, usually causes me throw up. Interacting with new people or meeting new teachers causes my heart to pound and creates extreme anxiety.
SPD interferes with the ability to anticipate social cues, read facial expressions, and voice tonality correctly, and self-regulate. It stimulates the fight or flight response. people with SPD feel constantly on edge, (although they may appear calm outwardly) all their senses are heightened and they are unable to shut off the intense need to run away in a panic. their need to find a dimly lit quiet, cool place to regroup and calm down overtakes anything else and they should not be looked down upon for it. It is not Cowardice.
When I learned and mastered the gift of reading, my life improved, somewhat.My childhood was now full of reading, and escaping through the words. For some, reading is a way to experience social interaction without having to feel the pressure or the pain of being physically present because it filters the stimulation of the external white noise. reading become something of a safety net, because it is something understandable and is regulated. but as wonderful as words are, ti can be detrimental to growing up. in ways it can isolate children from their peers.
SPD interferes with many peoples ability to Organize, their things and meet time sensitive deadlines, it can make some feel very inadequate and out of sorts. Sensory Processing Disorder affects the ability to function productively in a classroom setting. It does not mean that a person affected by it is stupid or mentally challenged. Finding a solution to this glitch has been my focus since kindergarten and im sorry to say i have not found it yet.The best thing to do is to support your loved one and understand nothing is easy, even though you, and other people may view it as so. It is often hard to find the words for how you feel, and as someone who has this Disorder, having to explain myself is even harder. people with SPD often don't feel comfortable, or don't know how to ask for help. it is unfair to put them on the spot and expect answers. the best thing to do is to just be there for when they do need you.
Another side effect of SPD, is uncontrollable emotions. Now, I know you may be thinking “all kids are on emotional roller-coasters” but for kids with SPD it’s more intense. they tend to respond to things with the wrong emotions and get very dazed and almost confused. When they reach the point of “shut down” it’s too late. It happens automatically, and its like their brain goes on autopilot. SID causes the brain to disconnect, they lose depth perception, it interferes with simple cognitive tasks, and its almost like they know what to do or how to articulate anymore. they become almost apathetic to the world around them. Being down in that emotionally numb place, is one of the best feelings in the world, the pain is gone.but no one can live that way. staying there too long is dangerous for a child, or an adult. if you fall into a depression, it gets very difficult to climb your way out.
SID affects every aspect of a persons life. From the clothes they wear to the food they eat. A lot of the time, the reason why they may startle easily when touched is because it is physically painful or they haven't given the person permission and it feels like an invasion of privacy. This simple act of Giving Permission can allows a person to connect in their brain that they won’t hurt me. Because even though logically they may know that a stranger or acquaintance probably won't hurt them, they can see the possibility if the person doesn't know they might do it on accident. the simple act of asking permission is one of the kindest things you can do.
SPD is not something that anyone will grow out of. Increased discipline will increase the symptoms. It is not something that a “PILL” will fix. It is a chronic neurological disorder that affects people differently every day and sometimes it changes by the hour. Developing and discovering coping mechanisms is hard. but with your help, it is possible. in this book, i will investigate, in short chapters, how each life experience may affect your child, or even you. we can do this.
The sensory checklist
to really begin this book, i would like to give you a little checklist. through a list of common behaviors, i hope to give you a way to briefly assess whether you, your child, or a loved one may be living with SPD. if they describe you, take note of it.
1. (person in question) sometimes behaves rashly, and seems af if i/ they don't have control of their emotions.
2.(person in question) can't deal with loud noises or people, and become visually agitated.
3. being touched randomly, by most people make (person in question) uncomfortable.
4.(person in question) startles extremely easily.
5. (person in question) constantly complains of being in pain.
6. (person in question) refuses to eat certain foods because of the way they feel.
7. ( person in question) dislikes noises that conflict. i.e: music in a loud room, people talking to them while they are on the phone, or even just more than one conversation happening at a time.
8. (person in question) sleeps with either all the heavy blankets, or none at all. there seems to be no inbetween.
9. (person in question) becomes emotionally distraught when frustrated.
10. (person in question) seems to loose control of their fine motor skills when frustrated, tired, or overwhelmed.
if you seemed to have answered positive to a substantial amount of these, you may be living with SPD or someone who lives with SPD. i am by no means a doctor, and this should not be construed as medical advice, but if you did i urge you to read on and get a consultation with medical personal.
Dealing With School
School is a source of many kids problems. between bullying, false ideals being shoved down peoples throat, and the lack of compassion, or even understanding from most of the staff, it is a horrible place for most. they (the people in charge) “try” to help “as much as they can”. thats what you are told when you go in for meetings, but they don't try to understand you as a person.
you are a test score, a number, someone that after four years they won't ever have to deal with again. the truth of it is that they only “help” because of their legal requirement and they don't want to do anything more than that unless forced. because of that, a lot of students fight through the day and that is the people who aren't fighting a disorder. it is horrible because kids tend to bottle up their feelings, the frustration, agitation, and exhaustion all hidden and compacted into their tiny little bodies until they are ready to burst. then their break down has to be less than ten minutes because any more and they lose credits for that class, or day.
but in truth, that is like asking an epileptic to keep their seizures in under ten minutes, or telling someone who is grieving that they can only be sad for ten minutes, then they have to work like normal.
every day they see delinquent kids miss more than half a week every month and they have to suffer through, soldier on. it can be really disheartening to see that they are expected to function on a higher level than they are physically and mentally capable of. the fact that for the five days school is in session a week, consecutively is extremely difficult to deal with. thinking about having to last through many school years is agonizing and makes people feel this rising panic. the sad thing is, many sometimes feel they would rather die than go to school tomorrow morning, and deal with people who think they slack off because they don't hand things in, or forget that things are due. they are not stupid. they are justified in their feelings and need to be treated as such. and i'm not saying let your child skip school every day, i'm just saying understand that they are trying their best and yelling will only make it worse.
Being social
public places are very hard to categorize into any one group so i gave it it’s own. I find it hard to interact with people when i am in a large group as many people with SPD do. this can make them come off as a bit calloused or even apathetic. this is only because they emotionally shut down when they feel overwhelmed. they sometimes feel like they have to put up a front in order to be okay.
when they go to a place where they don't know that many people, it is easier to ignore them and to feel like they are alright.for many it becomes a mind over matter thing. almost like they are willing themselves to be ok.
so instead of acknowledging that they are actually human and have minds of their own, it is easier to pretend they are a part of the background. witch sounds bad, but really it is just one of the only ways some people with SPD can step out of their house without being plagued with fear or intense paranoia.
the school setting is very different for me from the public place. in school it is harder to pretend that people aren't real because they are know. they now have a personality and name to go along with that face. that can very overwhelming.
having parties is also different. if your child actively wants to invite a few friends over, they are breaching their comfort levels. they still feel overwhelmed and are fighting to be ok and build up tolerance for being around people in a safe environment. When you actively force someone to be in a social environment, be it with family or not, you are actually negatively effectively causing your child to relapse if they don't want to be there. they may actually view you as being a villain.
family is not a reason to force your child to be uncomfortable. yes relationships are important, but forcing it on them makes them want to resist and they will begin to see talking to people as being a bad thing.
relationships
Relationships can be hard to maintain for anyone, be they romantic, platonic or family based. people with SPD tend to disassociate relationships and feelings.they tend to have issues with communication. it is hard to be in a relationship when you yourself are not stable. but that in no way means that they are unworthy of love or will never find it. in fact for most, love and validation is easily achieved.
it is hard to find someone who understand what is going on inside their head, when sometimes they don’t even know themselves. but theycrave what anyone else craves in life. they want to love and i want the chance to be loved back.
even in platonic relationships, they tend to push people this is normal. in many cases it is because they feel like a burden, so dont take it personally. in most families, a child with SPD is hard to deal with.they can be a source for a lot of frustration and heartache.but if you stick with them, watching them grow up can be the most rewarding feeling in the world.
the worst thing you can do is not believe them or accuse them of faking it. it can make them doubt themselves, you, and even people they have never met. it starts a destructive cycle of distrust of they feel they cannot come to you with their problems.
just because your child refuses you hug or kiss you, does not mean that they don't like you, or love you. it simply means they are overwhelmed. the best thing to do in situations like this, oddly enough, is create a symbol, noise, or phrase that is unique that both of you know means i love and support you. i will always remember that as a child, my father used to grunt and call them "air-hugs". so from across the room, i would know that he loved me and everything would be ok. it give a child comfort to know their parent loves them without steaping on or over boundaries.
The tedious relationship to Vacation
now you may be thinking that vacations would be a great thing. all kids love them and they seem like the perfect cure for the monotonous days of school. but for people with SPD, they just bring another source of anxiety. for a few days it is completely great and they can feel like any other kid. but after a while they become uncomfortable. It disrupts the normal everyday schedule in a very upsetting manner.
a break in schedule can be very hard to deal with for a lot of people, not just people with SPD. the thing that sets people with SPD apart from this is the physical reaction. People with Spd confronted with change can become physically ill. they are not "faking it". it is a very real reaction that many with the disorder go through. by disrupting the normal pattern of someone with SPD, you are causing them turmoil. by expecting them to react like normal people would, you put pressure on them that you probably don't even mean to.
there are two different ways to deal with this so it isn't as bad to the person.
option one is being spontaneous. if you don't tell them about it, they don't have the time to agonize over it and become sick. depending on the person though, this could backfire. by being spontaneous you can avoid them worrying themselves to sickness, but you may cause them to be overwhelmed for entirely different reasons depending on the person.they may become sick after words. think of it like a post fun hangover.
option two is meticulously planning. if you tell them exactly what you are planning to do, it becomes part of schedule and there for they are prepared for it. they dont have to worry because there are no what ifs about the plan. this can be bad if they are a chronic worrier.
i have used both and they both work about half the time. it depends on the situation and the person.
Planes Trains and Automobiles
traveling is hard with SID. it can be uncomfortable and very tense. it is hard to find a way to be comfortable in a moving vehicle. some things that i have found that help are reading, listening to loud music, or having an engaging conversation with someone. sometime it is hard to deal with not only the pressure that i am hypersensitive to, but also if i am tired, upset or in pain. they need something that allows them to focus on something other than the pressure in their chest. loud music, similarly helps by by creating an external source of stimulation for them to focus on.
buses are different than cars. in a bus, the pressure that is felt is significantly different than that of a car because of the aero dynamics. in a bus, you feel less affected by the pressure, and if there was no one making noise, it would be the prefered mode of transportation. sadly, because of the noise it puts most on edge. there is too much stimuli to handle.
being in a plane is uncomfortable for everyone, and is just that much more so for people with SPD.having a smaller plane is actually worse than a big one.the noise of the engines is tremendous. with a smaller plane it seems to be louder snd should be avoided when possible.
travel of any kind is quite stressful, but it is something that cannot be avoided. the thing to do is to be understanding limitations and stopping often. your child with appreciate it, and so will your back, trust me.