Today I got to look at the other side of my life. I took Daniel to a Toddler and Mom play group. I walked in to the building and was directed to the room where the class was being held. Even before I walked into the room I could hear Sally Noname Jr. screaming. No, 'screaming' isn't the right word. The best word to describe it would be an autistic scream. It is more throaty, deeper, and... well just trust me, different. How I feel about this sound is very similar to a parent of a young child. You just know your kids cry. You also know if its real, fake, or urgent. This was autistic.
Daniel and I walk into the room and it is everything I can do not to stare at this women and her child. I try no to, because it is rude to stare. I just cant help myself. I steal glances every few minutes. I know she sees me, and I am sure she thinking I am judging her, but I just can't help it. Do I look like that? I get a moment to actually pay attention to how the other parents react to her child having what my family calls an episode. I see her scramble to get things out of her bag to help calm Sally Jr. down- knowing they are sensory toys and tools. To a normal person she just looks like a mom trying to bribe her kid toward good behavior with toys when she should be disciplining them. But I know better, and I just want to hug her.
A younger women scoots over to help try to get Sally Jr. under control. Mom goes in the bag again and pulls out a vest. Not just any vest- the exact same vest I was looking at online last night. The one I can't find in any stores to actually touch and feel. This is a weighted compression sensory vest. Now I know I am obviously staring at this women and child because I am leaning and moving around other moms and kids to get a look at this vest, how it fits, and more importantly how her child reacts to it. I see her glance at me out of the corner of her eye- wondering if I am about to give her 'My 2 cents worth'.
Sally Jr. is taken out of the room- surly as punishment. When she calms down and behaves she can join in on the fun, right? No. I know exactly why. Because it is a small space, and there is a lot of stimulation. Sally's shoes and socks come off. Of course they do, I totally get it. I mean I could trade places with this women and have this be an average Wednesday afternoon.
I can't wait another second and end up pouncing on this poor lady.
"Where did you get the vest?" She tried to tell me that it's not just a normal fashionable piece of clothing, but I interrupt her- "Do you think it works? How do you like it? How long have you had it? How did you know about the sizing?" At this point I bet she thinks I have sensory issues and want the vest for myself! I see her face change as she realizes I know what its like for her, and she starts talking to me like I am an old friend.
How refreshing! We talk about judgements we have made, and that have been made against us. She shares her tips and tricks to get through the days, and stand there nodding in agreement, wide eyed wondering how she can read my mind so easily. I look over and see her daughter line up cars in a single neat perfect row and it tugged at my heart. I myself have blogged about this exact behavior.
Someone else is living this life too.
It is bittersweet. I hate for anyone to have to go through this, but I love to see it out in public. As I sat watching her daughter and talking with her, it was like we were part of the same secret club.
Monday, September 9, 2013
Thursday, September 5, 2013
A Coward in th Hall
Snacks... can't forget snacks... Oh and shoes... 2 left ones, no that's wrong. Where is the right one?? 6:15am, how is it that late already? I should have started earlier, why didn't I get up at 4:30? I was awake anyway. What a waste of time laying in bed 'thinking' over how today is going to go. No time for that now. Focus. I need more focus. Where are the snacks?
Fast forward an hour car drive.
Wow, is this a hospital, or a mall? (I look up and see floor after floor above me with open hallways. Real plants are by the entrance, and there is lots of natural light. How did they do that? I look up even further and see a huge sky light, not unlike what you would see in a mall. I wonder for a moment if I am in the right place. Then I snap out of it and realize I am in the way as a rush of technicians, nurses and doctors make their way past us to start their normal workday. Normal workday for them, emotionally difficult day for us. Okay, time to move before we get run over. I grab the handle on the stroller, careful not to knock off the blanket covering Nora while balancing the bag of snacks, toys, and extra large file folder of Daniels medical information. Taylor follows behind with a happy, unsuspecting Daniel.
Do I have his insurance card? Where is my wallet? Oh no, did I forget it? This wouldn't be happening if I got up earlier, or prepared last night. Why do I wait to the last minuet for...Oh there it is. Okay.
I stand at reception ready to check in.
I overhear the receptionists talking about leaving early tomorrow for a long weekend. I can't think about this weekend, I can't think about right now. How did I get to a place where I have to take my kid to see so many doctors? Do we even REALLY need to be here?
"Miss?!"
What? Oh right, lost in thought again, she must think I am ignoring her. I walk up and hand her the insurance card. She smiles at me and give me directions to the correct waiting area and we move along.
There are so many people here. All of them in a hurry. Some smile as we walk by, others look scared and anxious. How long have we been walking? Did I miss the turn? Is it just me, or does this hallway get longer the farther I walk down it. For a moment I pretend I am in a movie and acting out someone elses life as the end of the hallway stretches unrealistically into the distance. Back to reality- I look down at the little map crumpled up in my hands and realize we are 'here'.
The man in a white coat is talking, but I can't understand him. Why is he mumbling? Should I ask him to talk louder? Is that rude? I don't want to make him mad, he is dealing with my son after all... Crap, what did he just say? Why am I so distracted? How hard can this be anyway. I finally force myself to stay focused.
The next thing I know we have Bob the Builder on, and begins to puts the stickers (leads) for the EEG on his chest. Two go on Daniels chest and the rest go on his head. The first sticker goes on, and Daniel goes wild. Screaming, fighting, yelling, thrashing around. He does not like this man in his personal space, and he hates the leads on him. I try to calm Daniel down, my heart slowly ripping in two. Taylor has Nora in his arms, waiting for me to let him know I need help.
It only took a few minuets for me to realize that I just couldn't do this. I couldn't physically hold my child down. I stepped back, took Nora from Taylor and he stepped in my place. I am so thankful for my husband.
Breath, breath, breath. I have to be strong. Daniel needs me to be strong. (Screaming, moaning, fighting, awful sounds bouncing off the white walls of the dark room) I have to be strong... but I can't be. I am not. I step back slowly, horror in my eyes as I see Taylor climb on top of Daniel to restrain him. Tears are falling, the only reason I know this is because my face is wet. How long had I been crying? Finally I feel the door behind me and I reach for the knob, pop the door open and slip into the hallway. I hear the click of the door shut. With my back to the wall I slide down and sit on the floor.
I am coward. I am a failure. I should be in there. What kind of mother runs out of the room? God, you did not design me for this. I am a coward. A coward. Daniel needs a mother that is stronger, one that would stay. I am brought out of my thoughts by a deep, almost animal like sound that comes from my son. I cradle Nora tighter in my arms, get up and go back in.
The first thing I see is Daniel, his head bandaged up with wires coming out in all directions. I am frozen for a moment in shock from the sight. Then his eyes meet mine, and an already bad situation turns worse. I realize that there is nothing I can do that would be helpful here, and say that Nora and I will go for a walk and we will meet them when it is finished.
A perfect opportunity for a coward.
My already broken heart is being ripped into shreds as I walk out of the room for the second time, hearing my son fight to be 'free'.
I need something. I need someone. I need a distraction... I see a row of pay phones. $0.25 per minute. Okay, I can do that... Minimum 3 minutes... Fine, whatever... I open my wallet. I only have $0.70.
Ok God, I get it, but I really don't feel like talking to you right now.
Dressed like I got up at 5 am, tear stains on my face, and a heavy heart I start to push Nora in the stroller down the longest hallway I have ever walked.
I am on the 5th floor walking laps around the corridors when I hear Daniels horse pitiful cry from 3 floors down. If I could fly, I would have jumped over the railing to get to him faster. I ran to the elevator and as soon as I could scooped up my first born son, so happy to breath him in.
He was worn, he was tired, and was slightly upset still, but he was okay. He slept the whole hour ride home, and after lunch was his normal happy self. Except for his voice. Every time I could hear the strain in it I am paralyzed with guilt. He doesn't seem to be effected by this mornings events too much. He surely doesn't blame or hate me for leaving.
My thought is how do I stop hating myself?
Fast forward an hour car drive.
Wow, is this a hospital, or a mall? (I look up and see floor after floor above me with open hallways. Real plants are by the entrance, and there is lots of natural light. How did they do that? I look up even further and see a huge sky light, not unlike what you would see in a mall. I wonder for a moment if I am in the right place. Then I snap out of it and realize I am in the way as a rush of technicians, nurses and doctors make their way past us to start their normal workday. Normal workday for them, emotionally difficult day for us. Okay, time to move before we get run over. I grab the handle on the stroller, careful not to knock off the blanket covering Nora while balancing the bag of snacks, toys, and extra large file folder of Daniels medical information. Taylor follows behind with a happy, unsuspecting Daniel.
Do I have his insurance card? Where is my wallet? Oh no, did I forget it? This wouldn't be happening if I got up earlier, or prepared last night. Why do I wait to the last minuet for...Oh there it is. Okay.
I stand at reception ready to check in.
I overhear the receptionists talking about leaving early tomorrow for a long weekend. I can't think about this weekend, I can't think about right now. How did I get to a place where I have to take my kid to see so many doctors? Do we even REALLY need to be here?
"Miss?!"
What? Oh right, lost in thought again, she must think I am ignoring her. I walk up and hand her the insurance card. She smiles at me and give me directions to the correct waiting area and we move along.
There are so many people here. All of them in a hurry. Some smile as we walk by, others look scared and anxious. How long have we been walking? Did I miss the turn? Is it just me, or does this hallway get longer the farther I walk down it. For a moment I pretend I am in a movie and acting out someone elses life as the end of the hallway stretches unrealistically into the distance. Back to reality- I look down at the little map crumpled up in my hands and realize we are 'here'.
The man in a white coat is talking, but I can't understand him. Why is he mumbling? Should I ask him to talk louder? Is that rude? I don't want to make him mad, he is dealing with my son after all... Crap, what did he just say? Why am I so distracted? How hard can this be anyway. I finally force myself to stay focused.
The next thing I know we have Bob the Builder on, and begins to puts the stickers (leads) for the EEG on his chest. Two go on Daniels chest and the rest go on his head. The first sticker goes on, and Daniel goes wild. Screaming, fighting, yelling, thrashing around. He does not like this man in his personal space, and he hates the leads on him. I try to calm Daniel down, my heart slowly ripping in two. Taylor has Nora in his arms, waiting for me to let him know I need help.
It only took a few minuets for me to realize that I just couldn't do this. I couldn't physically hold my child down. I stepped back, took Nora from Taylor and he stepped in my place. I am so thankful for my husband.
Breath, breath, breath. I have to be strong. Daniel needs me to be strong. (Screaming, moaning, fighting, awful sounds bouncing off the white walls of the dark room) I have to be strong... but I can't be. I am not. I step back slowly, horror in my eyes as I see Taylor climb on top of Daniel to restrain him. Tears are falling, the only reason I know this is because my face is wet. How long had I been crying? Finally I feel the door behind me and I reach for the knob, pop the door open and slip into the hallway. I hear the click of the door shut. With my back to the wall I slide down and sit on the floor.
I am coward. I am a failure. I should be in there. What kind of mother runs out of the room? God, you did not design me for this. I am a coward. A coward. Daniel needs a mother that is stronger, one that would stay. I am brought out of my thoughts by a deep, almost animal like sound that comes from my son. I cradle Nora tighter in my arms, get up and go back in.
The first thing I see is Daniel, his head bandaged up with wires coming out in all directions. I am frozen for a moment in shock from the sight. Then his eyes meet mine, and an already bad situation turns worse. I realize that there is nothing I can do that would be helpful here, and say that Nora and I will go for a walk and we will meet them when it is finished.
A perfect opportunity for a coward.
My already broken heart is being ripped into shreds as I walk out of the room for the second time, hearing my son fight to be 'free'.
I need something. I need someone. I need a distraction... I see a row of pay phones. $0.25 per minute. Okay, I can do that... Minimum 3 minutes... Fine, whatever... I open my wallet. I only have $0.70.
Ok God, I get it, but I really don't feel like talking to you right now.
Dressed like I got up at 5 am, tear stains on my face, and a heavy heart I start to push Nora in the stroller down the longest hallway I have ever walked.
I am on the 5th floor walking laps around the corridors when I hear Daniels horse pitiful cry from 3 floors down. If I could fly, I would have jumped over the railing to get to him faster. I ran to the elevator and as soon as I could scooped up my first born son, so happy to breath him in.
He was worn, he was tired, and was slightly upset still, but he was okay. He slept the whole hour ride home, and after lunch was his normal happy self. Except for his voice. Every time I could hear the strain in it I am paralyzed with guilt. He doesn't seem to be effected by this mornings events too much. He surely doesn't blame or hate me for leaving.
My thought is how do I stop hating myself?
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