I want to know what to do next for my son. I want to know when we can get a "break" in understanding behaviors and changes. I want to know how to best advise the teachers and friends when something goes terribly wrong. I want to know how we can explain to family and friends the odd things we deal with. None of this will be in a manual. And oddly not many will have to deal with it so it will be hard to understand.
Without a manual, we have decided to reach out to the next professional for some guidance and help. We struggle along as best we can with the resources we have, the books I read, the therapy we have at home and at therapy gym until we reach that point when we know we need something else. We don't search for medication but we search for help. For a place that gets our child and can open a door for us to help him.
Without a manual, these are six the things we manage to deal with. These are the six things I am an expert at. These are the six behaviors I understand and that are for our family "the norm". These are the six things about my child I want you to understand.... And these are the six things we are seeking professional help with.
My child is strongly and strangely sensory driven. On a typical day he licks, smells, eats, touches, chews and listens to things I never dream of. Things I never even pay attention to! I have to say often "do not eat it if I didn't give it to you" or "we don't eat weird things we find" or "I am so sorry I do not hear or smell what you do" or "mom has old ears and they don't work like yours do, tell me what you hear". We often just ignore it when he licks things. We often carry noise reduction head phones for when places get loud. We have gum so he can keep his mouth busy. We accept that he needs to touch things to understand them and the place they have in the world. Imagine school with a classroom of children who use different soaps or teachers who wear perfume. Imagine the sounds from other rooms or the hallway (he can hear better and more acutely then we imagine). Imagine the loud places like the gym and the lunchroom. Imagine his curiosity with wanting to feel textures and children. In order to make sense of his world, he has to feel it with his whole body. I have allowed it and now he has to fit into what "society" thinks is normal behavior ~ and he can't lick, touch and smell everything all the time. My child never feels hungry. We often have to bribe him to eat. Not because he is picky. He just never feels hungry and if you are not feeling it, it is really hard to put food in the mouth. If my child doesn't eat TERRIBLE bad things may happen. His little body will be all out of whack and he may not be in the best of control. He throws his lunch away nearly every day, is so excited to be home he can not stop for a snack and fights the notion of dinner. But will often wake hungry and recognize it (at 3am) and ask for a granola bar. We always feed him. Imagine a whole day with little nutrition and how that will impact a small child.
My child is incredibly strong. So strong he can do amazing and terrifying stunts. His strength leads to ability to run at full speed for long periods of time. His strength and lack of fear lead him to things he imagines to be safe. His strength also often causes "accidents" to happen. He won't recognize how strong he is when he bumps or jumps or crashes into someone at full speed. He is drawn to play with bigger children who have the same ability he has. This poses its own challenges. His strength leads us to interesting activities and sports that few families do with smaller children. His ability lets us stay outside participating in things much longer then others are able to.
My child rarely understands pain. He can fall off a moving bike and get up, give me a thumbs up and keep riding. He can fall out of a tree or off the top of the playground and never even stop. He can have the wind knocked out of himself and just stand up and keep going. It is amazing and terrible. Because he rarely feels pain he has an incredibly hard time understanding the pain your child feels. He does not grasp that his out of balance wildly erratic movements can inflict pain on others and why they cry and stop playing. He can not grasp the notion of pain. It is a giant problem we address every day.My child is anxious about changes and nervous about patterns being out of order. I am not a very structured person. I decide to do things randomly. Yet my home is pretty orderly. It is a messy chaos. Should I decide to put on a new comforter or rearrange the toy bins my child has worry written all over him. If you close the shower door "wrong" he has to change it. If you don't put the car in the driveway in the middle he freaks out. If you drive to the school a different route it throws him off. Imagine this child now in a public school where there is structure but he can't understand the patterns or predict what happens or where things go. His anxiety and nervousness are buzzing in him and he is chewing his clothes, clinging, grumping around and sleeping with us again. Imagine school with so many changes right now. From a few hours to a full day, to changing bulletin boards and transition times between things. Imagine if things are not exactly where he left them from time to time.
My child has little impulse control. It is not something he understands or grasps. He darts into the street, he climbs tall places, he swims to deep depths, he takes things that don't belong to him, he says things he creatively made up, he touches things randomly. His impulse control is grossly under developed. Because I have one child and we are home together, I can manage those impulses. Imagine him at school when he has to manage those impulses on his own. Or he doesn't. He will take it if he sees it, touch it if he can, climb it, run without stopping. The worst part is that because he lacks impulse control, he will not understand that he has behaved irrationally or acted wrong or done something he should not have. He won't grasp that. He will not understand the consequence because he didn't' think his behavior was bad or wrong and he will do it again and again. He has no control over the impulses. For example, I must say 500 times a day to get out of the street and the reason why it is a problem it go in the street. I may take a bike away for the afternoon for riding in the street only to turn around and see him in the street on a different bike and then I have to explain why we do not go in the street at all, not just on a particular bike. It happens daily. The same conversation.
Our lives are strangely challenging. We find a place to be "normal" and we roll with it. We cry and laugh. We get dirty. We jump and crash. We eat at 3 in the morning. We party like rock stars and we snuggle in the quiet cubby. We pray every day that we are graced with the ability to manage the next day and we ask forgiveness when we can't. We find friends we hope can understand and accept us and we understand when they can't. We understand the need to ask for help. We let this little boy get to the place he is supposed to be at the speed he is meant to get there and we help him along the way. We try to make the best, most sound decisions for his benefit. We love him and each other because at the end of the day it is what we can hold on to.
These six things are what make my beautiful child who he is.
