Losing Control

The more life I experience, the more I realize that it’s all about control. In fact, NOTHING in life matters unless we can’t control it. When we feel out of control of a vital aspect of our lives, we will seek to gain it in other areas. These areas are generally superficial, and are to the detriment of ourselves and those around us.

I talk about it a lot, but the area of my life that is most out of control is the one area of my life where I experience the most shame. I genuinely feel like that if people close to me, who were not obligated to love me, knew the gravity of this certain situation they would abandon me. I certainly do have abandonment issues, but that’s another post for another time (maybe).

This thing that rules me daily is ugly and devastating. It’s loud; it’s messy; it’s dangerous; it knows no fear or boundaries; it never sleeps and it drains my every resource. It controls where I go, who I go with, how long I stay. It controls where I live, the foods I buy, the company I keep, and almost every thought that enters my mind. It controls my future and makes me regret the past. It is a constant reminder that I could be defective – that I am defective because no matter what I do – I cannot change it. It. Rules. Me.

It makes me feel more lonely and isolated than I have ever felt before. No rejection, abandonment, or betrayal has ever or will ever cut me so deep.

What’s worse is it has me convinced that I am unworthy; not worth the trouble. And it has nothing to do with appearance or personality. I know I am pretty ENOUGH and smart ENOUGH and patient ENOUGH. It's not a vice or an addiction. Even still, I could get all the surgeries in the world, obtain advanced degrees in the arts and sciences -- completely master myself and my desires; I could acquire wealth beyond measure and have every material thing my heart desires.

But it wouldn’t change this. This is for life -- the rest of my life. It’s ironic that the one thing that’s here to stay is the only thing in my life that makes me laden with insecurity and crippled with self-doubt.

And despite all my best efforts, it’s getting worse.

What is this thing? You’re probably wondering.

This thing that is stronger than me, and so fast that I will never out-run it is…

Autism.

I admit it.

I can't even IMAGINE how my son(s) feel.

Letter to The Principal

An email I wrote to Captain Gray's principal after a salty run-in with their receptionist.

Principal <______>,

I regret to inform you that I did not have a pleasant experience yesterday afternoon at the Captain Gray Early Learning Center. Let me preface by saying that I am a single mother of three children under five years old, I work full-time, and in addition I am a full-time advocate for my three year old son, Benjamin, who has been diagnosed with severe autism. These issues are no fault of your own or the Pasco school district, however, I have not had an overall positive experience with some of the administrative personnel.

I understand that workloads are heavy and budgets are light. I work for the government, in the financial sector, even. I, myself, am very much impacted by sequestration and will be required to cut and go unpaid for 120 hours between April 1^st and July 1^st. However, I do think the bulk of my complaints and concerns could have been altogether avoided with effective communication.

I have been trying to get my sons, Ross and Benjamin Baron (namely Benjamin), into a special education program that they could actually access for over 18 months. I lived in Burbank, and despite Ross and Benjamin spending over 50 hours/week in a state accredited Pasco daycare facility the school district refused to serve them. I understand that there are rules and over-crowding – again, this is no fault of your own. So I did what I had to do; I picked up my three children, all of our belongings, and moved to Pasco on March 1^st.

Since then I would describe the timely responses from the individuals in the special services program to be mediocre. After finally hearing back from <school psychologist> on Wednesday, March 20^th, she told me what the next steps were that I should take to get Ross and Benjamin enrolled in the special education program at Captain Gray. She simply told me to come to the office, pick up the paperwork, fill it out, and drop off other necessary documents. She failed to tell me; 1) That all the forms were located on the school’s website. I actually looked there before I decided to drive all the way from Richland (where I work) to east Pasco. And 2) That this particular paperwork is only accepted between the hours of 10am and 3pm. Online it clearly states office hours are between 8:30am and 4:30pm, with no caveats.

I left work an hour early to make it to Captain Gray at approximately 4:20pm yesterday, March 27^th, 2013. I don’t have paid time off, so that’s an hour’s pay I will never see – approximately a week and a half’s worth of diapers for two of my children. The receptionist (I did not happen to catch her name) was not friendly and her “apology” was ironically unapologetic. In fact, she told me that she could not accept my paperwork and that the office was “closed anyway.” I said I thought it closed at 4:30 and she replied with, “well, yeah, I guess… in 10 minutes” with a shrug. She then turned her head away from me and continued her phone conversation as if I were never there. That just adds insult to injury, plus the fact that I now have to take ANOTHER hour off work (at the very least) to deliver this paperwork.

This is an isolated incident, yes, but all these isolated incidences add up to a lot of time and even more frustration. I am not educated in the specifics of school administration – I don’t know how it works and I don’t know all the answers. I do know that the spirit of teaching our children and having “no child left behind” seems vain and trite – just something we say to make ourselves feel better. I very much feel like my child is “left behind” in the bureaucracy. I’ve spent over half of his life trying to get him help and jumping through hoops. Why do we say our babies cannot wait if that’s exactly what they are required to do? This is not to say the Captain Gray Early Learning Center and other schools in the district have not made a difference in the lives of the children they serve, but this is my perspective and my perception – and that is my reality and the reality for my children. I know I am not the only parent who feels this way.

I would urge you and other administrative leaders, if you cannot cut some of the bureaucratic red tape, can you please try to ensure that correct and complete information is given to tired and frustrated parents (all parents, really)? My patience is waning. That being said, I am excited for my children to start preschool. All the teachers I have met have been a pleasure. I know they really care about the children they teach.

I do hope this finds you well and that you enjoy the upcoming spring break.

Thank you,

Kendall Baron

The Way He Sees It

This is a letter I wrote from Benjamin's perspective to his new preschool teacher(s) at Captain Grey Elementary.

My name is Benjamin J. Baron and I am 3.5 years old. I am a sweet and determined little boy. I live with my mother, Kendall; and my two brothers, Ross (5) and Joseph (9 months). I developed normally until about 15 months of age when I began to have chronic ear and sinus infections. At that time I stopped talking and listening/responding to my name and simple commands.

I am sensitive to conflict, chaos, and loud noises – I can anticipate it, and I am very good at sensing when someone is irritated, frustrated, or angry. I will cover my hear ears and I will scream very loudly.

I am sensory-seeking. I rarely sit still unless it becomes part of my routine. I will sit for a moment and then run from my seat. I need frequent, sometimes constant, reminders to stay in or sit down in my seat. I like books; if any are left out or within my reach, I will get into them. The same goes for any toy that makes musical sounds or has flashing lights. If I see something up high that I want, I will find a stool, chair, or other toy to boost myself up to obtain the object that I want. I will get into any cupboards, closets, or pantries that are not locked.

I also like water. If there is a sink I will attempt to turn the water on and play in it. I like to chew on things. Particularly straws, my shirt, or any other article or toy whose texture appeals to me such as; soft or hard foam, soft plastic, squishy balls, nerf toys, and pens, pencils, and crayons.

I do not have speech, but I do have language. I am beginning to use very few “words” (only my mother understands them), but very sporadically. If I want something, I will try to get it myself. I will not ask for it unless I am prompted to do so. If you would like me to ask for something you will have to say, “Benjamin, would you like MORE <insert object>?” while physically signing “more” in sign language. If that is what I want, I will mimic the sign and make an “M” sound. I respond to pictures as language with help. I generally will not respond or look at you if you call my name. Calling my name several times will not do any good. You will have to walk up to me and get my attention if there’s something you’d like for me to do. I will not engage with other children, except my big brother Ross, but I can/will play along-side them.

I like to run, and if there are no clear, set boundaries I will run away. Count on it. It’s funny to me, as I have no real sense of danger or fear. If you’d like me to come to you or go somewhere with you, say my name, hold out your hand, and ask me to come to you. I understand this cue and I will generally walk up to you, take your hand, and allow you to lead me where it is you’d like for me to go.

I get frustrated, too, because I have a very hard time communicating my wants and needs. If I get frustrated I may cry, scream, lie down and kick the wall, cover my ears, or any combination of all of the above. I don’t like/love a lot of people. I prefer my mother, Bell (at my daycare), or my papa. I can tolerate other adults. Those I do love are gentle, kind, affectionate, and genuinely love me. I see the world differently than you, so I can inherently tell who these people are.

To calm me down you must speak to me in a soft, low or mono-tone voice; squeeze me tightly in a bear hug, massage and push down on my shoulders, and sing “twinkle-twinkle, little star” to me. You can also try massaging my feet – I really love that. In fact, if I’d like you touch or massage a part of my body, I will take your hand and place it on my back, shoulders, feet, or head.

I would like to learn to communicate with you and deal with my impulses. I’d like to make better eye contact and learn to sit still when it is socially acceptable. I would like to learn 5-10 words or objects and be able to speak their name, or at a minimum, identify them by pointing, gesturing, or returning said object(s).

I am not yet potty trained and I do not enjoy wearing a soiled diaper. If I poop in my pants and it is not noticed or attended to within a few minutes, I may stick my hand down my pants. I am not trying to be defiant or play in my excrement.  I sometimes have acidic bowel movements. When it touches my sensitive skill, even for a short period of time, it begins to itch and burn me.

I do not eat wheat, gluten, or any dairy products. I have not been diagnosed with food allergies, but when I eat these foods I am more hyper, less engaged, and have 6-8 runny bowel movements per day which leads to severe diaper rash. Please do not give me snacks or food/drinks unless my mother approves of them verbally or if my mother sends approved food items with me, even if you read the label and find no evidence of these ingredients.

I hope that my teacher(s) will be patient with me. I want to listen and follow instructions, but it’s very difficult for me. If you become frustrated, please know I am frustrated too. I hope we can get to know each other better during my time in preschool.

Love,

Benjamin