I am not sure if I am alone in this or not but here goes a rant. It is not that I don't understand the good intentions of others but I am defensive right now. I would not say offended but just weary and defensive. I am so tired of people meeting Joseph or just observing him and saying something along the lines of "he looks so normal and is so sweet!"
I just want people to know a few things. I am considering carrying around his massive file of reports and just say "here, would you like to read these?" Am I looking for sympathy? Probably. I suppose this is not very honorable of me. But I am human. I am a mom. I am a mom who deals with a special needs child and this is what I want you to know.
Special needs of the mind, illnesses of the mind and injuries of the mind have a higher rate than those with physical conditions and often have few physical conditions. Joseph would not be in special needs programs at school if he did not have learning disorders. He would not be in a school for special needs children if he did not meet the criteria. He would not have specialists in different fields saying the same things. I happen to be a mother who did NOT want a negative diagnosis. I went to different doctors and different types of doctors trying to get a different diagnosis. I have sat in the chair opposite the specialists who have studied him to hear the words, "I'm sorry but this is a very complex situation". NO! I do NOT want to hear this. I, too, "see" no physical handicaps. This frustrates me more than comforts me. There is something broken I can't see and can't fix.
No one sees, lives, hears, and feels the violence that we do. He slapped me on the back this weekend so hard it knocked the breath out of me and brought tears to my eyes. And this was a playful moment. He also pushed me into the counter this weekend saying he hated me. I have holes in the wall in every room of my house. Every door has a keyed lock on it...the hall closet, the wash room, bedrooms, storage room. Anything that can be used as a weapon or could hurt him has to be locked up....knives, bats, jump ropes, tape, belts, sheets, tools, cleaners, alcohol, medications, etc. However, there could never be enough protection as there are lamps, electrical cords, chairs, pillows, windows, sticks, rocks. So he has to be watched 24/7 when he is home so that he does not hurt himself, someone else or our property.
He has set fires, urinated in floor vents and holes in the wall, run a mile down the road in the snow barefoot, run into traffic, ran out of a courthouse in a city, has night terrors when he does sleep which is seldom, vomits for no reason, has strange food likes and dislikes, can't stand his nails or hair to be cut, has to swim with a shirt on so no one sees him "naked" but will walk through the house with nothing on, sees and talks to things that are not there, suffers an anxiety disorder, gets motion sickness, migraine headaches, irrational thinking, memory loss and distortion, and so much more. He does not feel severe pain but falls apart over the smallest pain.
One of his diagnosis is autism. It is a social disorder. He can not handle social situations. He shuts down. He will not look you in the eye. Because of this, and his finger twisting and flicking, his loss of words, and his nervousness you may see him as shy. He is but it is much more than that. This shyness is seen as sweetness. He is but..... And what you may not know is that this "shyness" and inability to communicate well, with a speech impediment, with social problems, and with anxiety issues (he will be scared you will laugh at him or not like what he says) what he is going through as he talks to you is very painful for him. So when we leave your company his stress kicks in and we are the ones he takes it out on. Oh, and he is medicated so his symptoms are not as severe.
He has severe sensory issues so it is always a guess as to what is going on at every moment. Is he too hot or cold? Is it too loud or too quiet? Is the room too large or too small? Is this shirt the right material, color or size? Are the lights too bright or is it too dark? Is the wind blowing? Is there a smell bothering him? Is there someone in the room that scares him? Is that chair too hard or too soft? Oh, and he is medicated so these symptoms are also not as severe.
They say to find his triggers so as to avoid the meltdowns. What do we do when everything is a trigger? What's a meltdown you may ask? It depends on the day and what set him off. He may run. He may scream. He may cry. He may hit. He may throw something. He may say something very offensive. He may start drooling. He may spit. He may break something. He may kick something. He may fall on the floor and pitch an all out tantrum which is not easy to deal with when it is a 10 year old 93 pound boy. Oh, and yes, this is ON medication.
I have heard some kind things from friends and family. I know that this is just a venting rant today. I know that I have prayers and support. But there have been several people who have told me that it is "doctors" (said with almost a hatred) that have told us there is "something wrong". Why did we want him "labeled"? And "what do doctors know? They are crazy?" Maybe it is just his diet?" "Maybe he will outgrow it?" Or "I don't know.....I have children that misbehave...." My all time favorite was "There is nothing wrong with Joseph. He just needs LOVE!"
So please, if you hear that someone has a child with autism, bi-polar, schizophrenia, brain injury, or other mental illness keep these things in mind. When you see a child "misbehaving" in a public place give the parents the benefit of doubt and think that maybe they have a disabled child. Their handicap may be unseen but it is still there.