Wednesday, 16 May 2012
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Shades of Gray
It seems that I will be learning lessons on this journey for a long time coming. This week I had a big realization about D. The shades of gray in our life are making her life miserable, which makes our lives miserable. I really didn't understand before when parents would describe their child's need for routine. Some people would say their children craved routine. I interpreted this as meaning that routine is only necessary if your child gets upset when things don't happen at the same time or in the same order every day. I didn't want D to become rigid, so I never followed a strict schedule with her. We generally do things in a similar manner every day, but things have always been really flexible in this house.
But now I'm starting to realize something. D craves routine, just not for the reasons I thought. Ambiguity is distressing because she doesn't understand the expectations of her and her surroundings when we live in the gray area. So let me give my best example. We used to only let her watch T.V. (her most highly preferred activity) for an hour in the morning before her therapies began. AND THAT WAS IT. No if's and's or but's. And she was fine with it. She never even considered the possibility that T.V. could even occur at another time of day. Well, a few months ago we wanted to return to rapport building with her therapists when she was having a hard time. We thought if she could sometimes watch a short video with them or use it as a reinforcer every so often, then she would pair that with the concept of the therapists and it would be good for rapport. It did work, she liked the therapists more, but it was a trade-off for a different problem I hadn't expected. After that she started asking for it ALL THE TIME. I mean every 5 minutes. And because sometimes she got it and sometimes she didn't get it when she asked, she kept getting more and more frustrated with this concept. I didn't know what to do, though it seems so obvious to me now.
The problem is that she will ask for this item, and sometimes she will randomly get it (because I cave or the therapists are there) and sometimes she won't. And so it has created a situation where she is constantly asking, being told "no" more frequently than "yes" and then randomly being rewarded for no obvious reason. And all those "no" answers she is getting are leading to major tantrums and turmoil in our house.
And that's not the only example. At least we have stayed firm with some things. Nap time never changes, nor does bed time, bath time, dinner time or supplement time. Which means we don't have to fight these things. But with other less obvious things, like making D walk with me on outings rather than carrying her, I have not been consistent and it is creating a lot of turmoil in our life. Sometimes I put my foot down and sometimes I don't. For someone with autism, this is a major problem. I am confusing her. She doesn't know why some days she gets what she wants and others she doesn't.
Its time that I accepted that D needs me to pick our battles. Going back and forth on them isn't going to work. T.V. time needs to be clearly at one time a day only. She needs to be required to walk with me at all times or I shouldn't require it ever. She either needs to be required to sit at dinner or not. The days and times that we go outside for the park or walks need to be outlined clearly and consistently in her visual calendar and not given at random when she requests it. It is my job to make the rules and make them clear. It is also my job to create a routine that diminishes the amount of frustration is D's life so that what is expected of her is very clear.
I'll let you guys know how it goes! Wish me luck!
Monday, 07 May 2012
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Releasing the Grip of Clenched Fists
I am a problem solver. Most people who know me well can attest to this. I see a problem and I become obsessed with finding a solution. It is one of my greatest qualities because it has allowed me to tackle things a lot of people wouldn't be able to face. I work tirelessly, until I find an answer that can bring me peace of mind. I chip away at each possibility: researching, feeling, thinking, asking. Always asking. I intuitively know how to look at something from all angels and the best part is- I can actually put myself in the situation and examine how each solution would make me feel. Only I don't merely imagine how it would make me feel, I take myself there. I actually become completely enveloped in it, as if that path has happened. A lot of people have similar qualities about them, but many who know me would agree that I have a certain intensity and tenacity about my approach that is fairly uncommon.
And that's probably due to the obsessive nature of my trait. This great quality is also my inner demon. Sometimes its best to just stop. Some things don't have solutions that can be imagined in one night. Some things take time. Some things take hope. Some things are simply 100% out of my control. And even yet, some things don't have a good answer. Sometimes the answer will be one of pain regardless of whatever skills I have. And when that is the case, I clench hold even tighter. I wrack my brain over and over, rolling the possibilities amongst each other like powerful waves crashing in my gut, begging for it to end. I find myself lying awake at night with a chest full of pounding, ice-cold steel spreading across the trunk of my body until it finally reaches my limbs and I can't help but let the panic set in. The realization that this situation is not one that my problem solving skills can fix. I am trapped.
I would say this is the number one source of agony in my life. When I was younger, around 15, I started thinking about death. Not in a morbid way. Not in a suicidal way. In a realistic way. I realized it would happen to me. It would happen to everyone I could see around me. It was only a matter of time. Here we were, investing everything into this life, pretending things mattered, when ultimately we all would end up the same- in the ground. It scared me. It more than scared me. It changed me. This was the first unsolvable problem I encountered that took my mind hostage. I raged against nature, against the universe, angry for the lot I had been given. I felt it was cruel to be given such a wonderful life, to be put here in the world and given no explanations. Why do humans exist? Why does anything exist? What is going on here? It felt like a ride with no exit. Stuck on a roller coaster, that eventually drops off into a great, back abyss called death and you have to keep riding. I looked for escapes, but there were none. And I panicked for a long time before I relented. The whole time there never was an exit, and I wasted a good portion of my teen years filled with anxiety over something I was powerless to. I could have relented long before and seen the beauty around me, learning to enjoy the ride rather than be tormented by it.
And I have to say, I've changed very little. Autism threw me into a similar whirlwind. I looked for the exit routes, I searched for the answers and ultimately, the only one I could find I did not like- time. Only time will tell how my little girl will fare. I can only be responsible for as much as I can do to help her in the right direction, but there is no way to tell where this path leads right now. Another answer I did not like was the frightening truth that it wasn't all up to me. I could not bear full responsibility, though I would like to. Much of the outcome would depend on my daughter. Being a guide is all I can be to her, but in the end she is the one who steps where she steps, not me.
Why I try to bear the burden of others' decisions is beyond me. I so desperately want them to make the choices that I think will make life easier and good. But in the mean time I waste a lot of energy worrying, fighting, and filled with anxiety about things beyond me. I can only hold myself accountable for my own actions and feelings, but not those of the people around me. Their feelings, their decisions, their path is ultimately their own.
My fists have been clenched so tightly that I have not allowed any room for faith. It takes a whole lot of faith to get by in this life, whether or not people even realize they are utilizing it. Sometimes you have to open up your heart, release your grip and say "I did my part, the rest is up to you." All I can do is invest in the things I love, in the people I love and have faith the I can handle whatever comes from that. If it is a dark, scary place, then I can say I did my best. But my best is all I can do.
"If you don't like something, change it. If you can't change it, change your attitude." -Maya Angelou
I think its time I changed my attitude.
Thursday, 03 May 2012
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When You Feel Like You Are Losing Everything You Love
God grant me the Serenity to accept the things I cannot change, the Courage to change the things I can and the Wisdom to know the difference. Even if I lose everything, grant me these things so I can conquer the pain, loss and grief.
Tuesday, 01 May 2012
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When You're Going in Different Directions.
This blog entry is really hard for me to write. I don't really want to share what I'm feeling right now, but I also don't know what else to do. I don't like people knowing about the ways in which I'm struggling, like I talked about in the previous entry, because I don't want to prove them right. I don't want to fail, or for my marriage to fail, my life to fail, like they all thought it would.
But right now, I'm struggling badly. I'm really unhappy in San Francisco. I LOVE this place. I love the culture, the food, the art, the sites, the festivals- everything. This city has so much to offer and it will always have a piece of my heart. But the truth is, I don't think it is the best place for us right now. D does not have enough space in this one bedroom apartment. She is under stimulated here and her boredom is constantly leading to tantrums. Having to spend 20 hours a week in a one bedroom apartment without easy access to the outdoors is very difficult. For both of us. Going outside isn't much better. Outside she is overstimulated. She tunes out because there is SO much going on around her in a busy city. Then she gets worn out by all of the stimuli and ultimately tantrums when we get home because she is upset about what she has just had to process. And going outdoors here is hard in general, because there isn't any 'just walking outside' in your PJ's to get some air in your back/front yard. What yard? Every time we want to go outside we have to be fully prepared. That means fully dressed for the outing, with snacks, clothes, toys, diapering, etc etc. Its not as easy as it sounds when your child might flip out publicly is you bring the wrong food/toy or whatever. Either way, we can't just meander around the block for a minute.
Aside from that, we are isolated. There isn't anyone to help us when something comes up. AND THINGS COME UP. Micah doesn't have the kind of job where he can take days off. Sometimes our schedules get mixed up or someone is sick or therapies need to be rearranged and there is literally nobody that can ever help us in these situations. It is so stressful I can't even describe the magnitude of pressure it has placed on my life. Also to be noted is the fact that no one can ever watch D while we go out. That means we never go out. Micah and I have no personal time together except in this little, isolated house. We need to have people helping us and giving us the respite we crave, but there is no one here. It would also be lovely to not have to cook dinner alone every night and to have someone around helping out every once in a while. Just to not be so alone.
San Francisco is not child friendly nor child centered in any way. The number of children around us is minimal and you wont see them playing outside or running around the neighborhood. D's exposure to peers is totally limited. She goes to a playgroup on Mondays, but people are distant there and I don't feel any sense of community. San Francisco is lacking in that whole neighborhood community department that I know D is in need of. No, it is every man for him/herself out here. I do not feel accepted for who I am and the kind of life I lead here. People accepted here are successful adults, artists, free-thinkers, singles, gays, hippies, college students finding themselves, innovators and the elite class. I LOVE most of the things I just named. But I am part of a young struggling family. And there is nothing here for that demographic. Nothing.
We are also lacking in fresh air, warm days and access to nature. It is always cold. It is almost always foggy. It is not near a place where you can go and be in nature uninterrupted. The air is polluted, everything is concrete and the tactile properties of nature are lacking in her life. It honestly breaks my heart.
And then there are the amenities. I'm not sure how many of you out there are familiar with city amenities, but it isn't pretty. I have no dishwasher, limited kitchen space, a sink that about 10 in by 10 in and probably only 10 in deep (try fitting a frying pan in that), no laundry machines, no closet space, no outdoor space and no dining table. It.is.not.easy. Repeat after me, NOT EASY. I know I sound like I'm just complaining now, but it adds up. Sundays? The one day Micah has off? You think we spend this time together, our one day to be a family? Nope. I do laundry that day. And family dinners? No we don't have a table for that. And the sink is usually full of dishes or fills of so quickly and D is usually so antsy about being in our house at that point, that I try to make the easiest thing possible, or nothing at all. Of course we eat, but its not the family dinners I want to have with my loved ones. Setting up activities is also difficult because of the space. Our art supplies are not organized, but shoved into unreachable places and the space to even do them is scarce. Not to mention that Micah and I have such restricted privacy and personal space because our living room has our bed in it and D has the bedroom to herself. We couldn't do it the other way because then we could never have anyone in our house after her bed time or walk around the house even after her bed time without disturbing her since the living room has no door.
Household repairs are a no go. Micah isn't a handy man and there's no one around who is. It usually falls on me or doesn't get done. If we had others near us (like Micah's dad...) who could show us how to do these things and help out, we could take care of all those little things. Not to mention, God only knows what kind of things she could be getting exposed to here. I don't know if we have mold, or lead paint, or what the heater is like, or how old the pipes are. I can't afford to take care of all of those things and the fact of the matter is, this house is O.L.D. There probably are some safety hazards and I really don't know how to take care of them or if there is even a point in trying given the age of the house. When you sign a lease in San Francisco, regardless of the house, you also get a lead and mold disclosure, because all of the homes are so old you have to sign paperwork acknowledging that you understand and accept the terms. In other words the landlord is not held accountable, and if I wanted to get it taken care of it would be out of my own pocket. I don't even know if the place is retrofitted.
All of this and more weighs heavily on my shoulders. The truth is between D's tantruming, the limited space and outdoor time, the lack of family, the isolation, the possible safety issues and the restricted amenities, I DON'T WANT TO BE HERE ANYMORE. I want out. It is too much. I can't go on like this. I know it isn't the best thing for us and I don't want to do it anymore.
But then there's my husband. He does not want to move. He does not want to even consider it. He feels he has sacrificed so much and he just can't sacrifice anymore. He loves it here. It is part of who he is. It is part of his identity. He wants to be a dancer and he is good at it and people have shown interest in him. He has been involved in some projects with pretty renowned companies. I know this is his dream and he doesn't want to give it up. He feels like it is all he has left and he can't, no he wont, let it go for his family or for anything. I understand it. He does work so hard for us and he has given up a lot. But at the same time so have I. The truth of the matter is that my happiness comes from seeing D succeed, and his does too, but he will only give so much before it interferes with his dreams. I am NOT in any way trying to bash him. If you knew him, you would see one of the most talented, kindest, strongest, patient, creative, intelligent, forgiving and loving people on this planet. I truly and DEEPLY love him. There is no one like him and he is a special person to me. But he doesn't feel he can give in this area.
I am at a loss as to what to do. I don't want to go separate ways. I love him. This isn't about love. This is about wanting two different things. I want him to want what I want, but I can't make him. I know if I move him away he will resent me and hold me accountable for shattering his dreams. I know if I stay here I will continue to feel like I am sacrificing what is best for D and I and even Micah. I know I will continue to be too stressed and isolated and to be frank with you all depressed. And its not the kind of depression that is internal, the kind caused my a chemical imbalance. Its the kind that is caused by living a life that is not conducive to calm, happiness and freedom. I feel alone, tied down and stressed every single day here. I don't want for my marriage to fail, especially if I still love my husband. But we are not seeing eye to eye on something that is very significant. Either way, one of us is going to be very unhappy. I can't stand that we can't agree on this. It is heart wrenching and I don't know what to do right now. How do you solve a problem like this? Has anyone experienced this sort of thing? If so, I want to know what you did and what helped.
Monday, 16 April 2012
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My Name is Kaitlin and I Have a Problem
Hi everyone, my name is Kaitlin and I have a problem. Here's what it is: putting on a false front. I don't like writing blogs or talking to people about when I am struggling. I have this insecurity. It makes me believe that I am not supposed to let anyone know how much I am falling apart. The only people who really know the truth have been my mom and husband. Partially my father and mother-in-law, but I have hid a lot from them as well.
This comes down to my own insecurities. Ever since I decided to have D at such a young age, I knew that people were judging me. Most people expected to see me fail. I had it in my head that I was going to prove them wrong and I think that I have. But for some reason I have taken this a step further. I have made myself believe that if I need any help, if I show people the ways D isn't doing well, if I let them know how my marriage is struggling, how tight things are financially, how depressed and anxious my husband and I are and how messy the house can get, that they will say, "see, I told you she was going to F this up." I want people to proud of me, to think: Wow they really pulled that off! Boy was I wrong about them. They went above and beyond!
But the truth is, many full grown adults who had everything perfectly planned out when they got pregnant, don't handle my situation as well as I have. People who have well-established careers and bigger homes fall to pieces too when crisis hits their life. The only difference is it feels more acceptable in my eyes if they fall apart than if I admit to struggle. I don't think this is true, but in my head, everyone feels sorry for them, is understanding and more willing to show compassion. But in my case, it feels like everyone is going, "uh oh, the kid has autism? Oh man, I feel bad for that kid, how are those young parents going to deal with that?" Truthfully, this is probably all in my head. But it has prevented me from letting people know that my life sucks a lot of the time lately.
This year was rough on us. July 2011 my husband had 2 knee surgeries that kept him out of work for almost 3 months. This completely wiped out our savings. Summer is already a difficult time because my student loans usually run out so Micah has to work more as it is. Anyway, we ran out of money and had to ask for help. I already felt like a failure at this point, but I didn't have time to worry about it because I ended up in the hospital the same week Micah had his second knee surgery. Actually it was the same day. It turned out I had an ectopic pregnancy and hemorrhaging ovarian cysts. I was in and out of the hospital for about 3 weeks. After the dust cleared, about a week later, I had the epiphany no parent wants to have about their child. That something was seriously wrong. That she had autism. I did not return to school that semester because I needed to establish therapies and there was no way I could sort it out in time for school. This cut our income in half since I did not get the student loans and grants we rely on. 2 months later, Micah had to change jobs because of a situation with his boss (cue crazy person alert) and that once again cut our income in half (that means we were at a 1/4 of the income we had to begin with and our savings wiped out). This all happened at a point when we needed the most money possible, given all of the doctors, therapies, tests, supplements and specialized foods we needed for D. This was probably our lowest. We barely had food to eat at the worst point and I don't think we let anyone know how bad it was. We did get financial support for some things, but it wasn't as much as we needed. Not because people weren't willing to help, but because we were embarrassed to share how bad it was. There was a point when we had to return food to the market to buy supplements for D. We ended up eating some beans and rice for about a week until a paycheck came in. The next week our car was towed. Some things have gotten better financially. I returned to school part-time so we have some loan/grant money now and Micah finally got his personal training certification and a second job as a personal trainer. But it still isn't enough if we want to do an independent evaluation and have a lawyer for D's IEP.
The thing is, we aren't a couple of irresponsible kids who caused this all the happen. We work our asses off to make ends meet. D has a nice home, excellent medical care, specialty food from Whole Foods, plenty of toys, great therapists, and the cutest clothes. She has never known the hardship Micah and I face. Never has a sacrifice fallen on her. Micah and I do not go out, we do not have new clothes, we eat crappy food and we work ourselves into the ground for that to be possible. These things that happened to us, all at once, would be a hardship for any family. I don't think I should have to feel ashamed of the help we need, but I do.
And in return I do not let people know the pain we are in. That in all the ways D is doing well, she is struggling and behind in just as many ways. I have been constantly sick because I do not take care of myself and I am stressed beyond belief. My husband and I are worried if we are going to make it, as much as we want to, we are having a lot of difficulty feeling love for each other. And I understand why, we make no time for one another. We are just letting our love die. We both deal with what we have gone through in completely opposite ways. Micah goes into a state of denial and secrecy, while I go into a fight mode with a one track mind, completely obsessed with autism. At night we watch T.V. and then we go to sleep. Otherwise we don't see each other. We try to make time, but we are both mentally and physically exhausted. By the time we get a moment together we are desperately trying to catch up on the relaxation we need. When we finally feel relaxed, time is up and its back to life. We do have people around to ask for assistance and as much as some try to help from a distance, the sad truth is, it isn't enough. We have no friends we feel comfortable to call on and I suppose that is partially our fault as well.
I really don't feel good. I don't like letting people know that. The inspirational things I write are true, but they aren't the whole truth. They are a fractional truth. They are the light at the end of the tunnel, that I reach after I have gone through the struggle. I don't share the process, I only share the beautiful endings I find after the storm. But that isn't reality. Before every rainbow there is plenty of rain that I have to get through.
For my sake, my family's sake and for the sake of all those other families out there trekking through the rain right now, I am going to try and share this aspect more. I think we all need that.
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