Tuesday, February 25, 2014

No Amount of Beer will Help This...

The past few weeks I have been struggling with my emotions...well, really it has been most of my life, but the last three weeks or so have been particularly challenging. Actually, to be completely truthful, saying the problem has been my 'emotions' might lead you to believe that there are a 'variety' of feelings that I am challenged by. This is not the case. I have been struggling with one emotion and that is sadness. I have been really, really sad. Sad enough that the amount of running I have been doing hasn't been able to neutralize it and the voice calling to soothe it with beer...or wine...or tequila has been loud. Rest easy though, I have
not stepped foot in a bar or liquor store.


My sweet and lovely gem of a daughter, Tilley pushes me over the edge of sadness to despair at times. She will be eleven later this year and sometimes it is like living with with a three year old. Tilley has Asperger's and as such she is intellectually gifted and could tell you in great detail about the life of a koala, but has difficulty using words to convey her own feelings. She will talk non stop about the intricacies of the world of Pokemon, but can't find the words to tell me she doesn't like something, instead I get to try and decipher her sobs, moans and groans to guess what is bothering her.

Tilley thinks in black and white and sees all events as either fair or unfair. If things don't fit into her fixed patterns of thinking, she cannot simply switch gears and go with the flow. Flexibility does not come easily to her, if at all. Another struggle for Till involves her senses. Loud, echoing noise, like might be heard during an assembly in a gymnasium or at a sporting event bothers her to the point of sleepless worry the night before and ultimately translates into her not attending the activity.

She will immediately pull off her clothes if they have come in contact with moisture, as she can't stand the feeling of the moisture against her skin and she can't tolerate that they are soiled and imperfect. The dog sniffing her with a wet nose can produce this action, as can a spilled drop of apple juice.

 At other times she has a super human ability to smell things. She can identify smells that most of us don't even realize are there. The downside to this is when it is a smell that bothers her. She hates the smell of mint, which leaves us in a difficult spot with toothpaste. It is so extreme that she will try and get out of the car if she smells freshly brushed teeth or if there is mint gum being chewed.  Any smell that she doesn't like can put a halt to anything we are trying to do. Last week we got out of the house and being pressed for time scurried to the car. Tilley jumped in and jumped right back out. She couldn't stand the smell of the 'laundry breeze' air freshener I had placed in the car the day before. Already late, it took extra time to coax her back into the car after I had removed the scent because the smell lingered.

These are just a few examples of life with Tilley and reading about them in isolation does not begin to paint the picture of  my day to day challenges with her. I can't remember the last day that we got to school on time. Daily there is at least one reason for her to resist getting up, getting dressed, eating breakfast, brushing her teeth, having her hair brushed, putting her outdoor clothes on and getting out to the car and just when we have marginally conquered all of that, she will have some need to return to the house. You can't lean on this kid too heavily either. If she starts to feel any kind of pressure being placed on her or if she senses some unhappiness or disapproval with her efforts she can collapse into a melt down which sends her running for the comfort of her bed and we are right back to where I spent 20 minutes extracting her from to begin this sodded process.

Tilley was diagnosed a year ago, but I have been her mother for over ten years and none of this is new. What is new is that we were making some progress with the help of an Occupational Therapist and then Christmas break put a halt to our daily routine. Once school resumed in the new year, I knew that we would face some challenges getting her back to routine and I hunkered down and was ready for that storm, but it is persisting, much like our long cold winter this year. About four weeks ago, it seemed as though the problem of getting back into the school routine had resolved but was replaced by a new reason to hate school.

A reward program in Tilley's class has turned our house upside down because to her it is NOT fair and she can't seem to meet the expectations for earning a 'Platinum Card', therefore she hates going to school which makes our mornings extremely difficult. Why can't she just get out of bed in the morning when I wake her? Why does she lay there and moan and roll around and refuse to get dressed? Why do I have to choose my words so carefully in case I say the wrong thing that might add fuel to this fire? Why, why, why? Why can't she find a bright spot in the day ahead? Why can't she smile? Why does it all have to be so hard for her...and me?

The sadness I feel is for me having to maneuver and balance every detail, every day just to get out the door, but deeper is my despair for her and the fact that she can't enjoy anything like other kids do. I know that I have no right to complain when I have a child who is intellectually and physically healthy, but I would give a lot for her to be of average intelligence and over the moon happy.

 Isn't that the standard parent line..."I just want you to be happy"? I just want her to be happy with life. I wish she could wake with the hope of something wonderful happening, instead of being filled with dread for what might happen. What must that be like? This is not as defined as waking up and worrying about a test today or a presentation or a late bill payment. This is every day worry about just being. What is it like to have to think that way all the time? I am driven to tears of frustration and inadequacy parenting her and then I stop and question what is it like to be in her head? How hard is it to be her? From my perspective it looks like it is so hard for her to be in her skin. It breaks my heart and no amount of running helps that because it's not something I can change. This is how her brain works.

I do enjoy moments with her when she is not troubled by anything but in the back of my mind I know at any moment it could all fall apart if she were to hear something or smell something or feel something that she can't handle. This is our reality and we do our best but sometimes it just make me want a pitcher of beer; just as running doesn't help this, I know Alexander Keith won't either, so I am still sober and running,because what else can I do...



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