I am emotionally drained and numb right now
Our daughter's appointment was at 4 pm today. I picked her up and than Joel along the way. Joel's x picked the boys up and took them to volleyball practice.
We meet the neurologist. She's new, we've never seen her before. She's a older lady in her 60's. We talked for a while then she says she wants to observe our daughter in a low stress environment for about an hour. Without any her sensory bag or air pods. We agreed and I'm a bit surprised when she says she wants Joel to be in the room with her and not me. I agree because she's the expert.
They go into a room it was books, video games, and a table full of card games. Our daughter picked the cards and asked Joel to play phase 10 with her. They sit down to play and the doctor and I watch though one of those weird mirror windows you see on tv.
So as they play she asks me many question about our daughter. How does she handle stress, loud noises, crowds, family, friends, hobbies. I answered her but I never looked at her I was watching my baby girl. I counted her tic like movements. Always the same. I watched Joel as well. He was prefect. He didn't react or even acknowledge her movement.
Once the hour was up we went back into the office. The doctor gave my daughter her bag and asked if she wanted to read while we talked.
Our baby girl curled up in a bean bag chair, put in her air pods and started reading.
Joel and I sat down. I wasn't surprised by what she said. There isn't a clear test for tourette's but based on what she noted today and from what Joel and keep track of over the last week she showed signs of tics. She also said her tics seemed to be mild and she noted that the sensory bag and air pods are helping her, may have been helping her control them without anyone noticing. With her being on the spectrum and her sensory issues it isn't easy to say for sure if she has tourette's.
She then said she wanted us to take away the sensory bag and air pods for a weekend and keep track of her tics
I honestly don't know if this was a tic or me but I almost shouted out are you out of your f@cking mind. Absolutely not.
She seemed unfazed by this. Joel as well.
She pushed a piece of paper in front of me. She was not only watching her she was watching me. She wrote down every tic I had in that hour. It was a lot.
I keep track of your tics and outbursts. She said she hadn't seen someone with tics as as mine in a long time.
Who the f@ck told you to do that. A Tic, me both I don't know.
I watched you struggle to control them. I'm watching you fight now to hold them. I want to know why, Joel wants to know why, your friends want to know why you do much to make sure your daughter and sons, and everyone else, even the hamster has what they need to help them get tough a day but you do nothing to give yourself that same relief. I want to help you.
I couldn't answer her. I couldn't say because I'm not worth it, I don't matter, I just need to make sure everyone else is ok. I don't matter. They are what I care about. I am not worth it. But it's true.
I didn't need to say it. She knew it, Joel knows it.
I wasn't prepared for this. But Joel, Star and my buddy were. They planned this whole thing out. They asked the doctor to observe me as well as her.
She said I want to see your daughter and you. I want to help you , and working on ways to help you manage and maybe calm our tics. I want you to to matter as much as they do.
I felt like I got hit by a brick wall. I'm pretty sure I had an anxiety attack.
I feel like I should be mad at Joel, this was about my daughter not me. I don't matter she does.
But for the first time in my life I have someone who does think I matter.
Honestly I don't remember much of the night after that. It was late when we got home. We had a fire and cigar. I didn't say much.
He said I know your mad at me but I don't care. You need this as much as she does.
He went to bed. Now I'm sitting here, to numb to be mad, to numb to fight.
We meet the neurologist. She's new, we've never seen her before. She's a older lady in her 60's. We talked for a while then she says she wants to observe our daughter in a low stress environment for about an hour. Without any her sensory bag or air pods. We agreed and I'm a bit surprised when she says she wants Joel to be in the room with her and not me. I agree because she's the expert.
They go into a room it was books, video games, and a table full of card games. Our daughter picked the cards and asked Joel to play phase 10 with her. They sit down to play and the doctor and I watch though one of those weird mirror windows you see on tv.
So as they play she asks me many question about our daughter. How does she handle stress, loud noises, crowds, family, friends, hobbies. I answered her but I never looked at her I was watching my baby girl. I counted her tic like movements. Always the same. I watched Joel as well. He was prefect. He didn't react or even acknowledge her movement.
Once the hour was up we went back into the office. The doctor gave my daughter her bag and asked if she wanted to read while we talked.
Our baby girl curled up in a bean bag chair, put in her air pods and started reading.
Joel and I sat down. I wasn't surprised by what she said. There isn't a clear test for tourette's but based on what she noted today and from what Joel and keep track of over the last week she showed signs of tics. She also said her tics seemed to be mild and she noted that the sensory bag and air pods are helping her, may have been helping her control them without anyone noticing. With her being on the spectrum and her sensory issues it isn't easy to say for sure if she has tourette's.
She then said she wanted us to take away the sensory bag and air pods for a weekend and keep track of her tics
I honestly don't know if this was a tic or me but I almost shouted out are you out of your f@cking mind. Absolutely not.
She seemed unfazed by this. Joel as well.
She pushed a piece of paper in front of me. She was not only watching her she was watching me. She wrote down every tic I had in that hour. It was a lot.
I keep track of your tics and outbursts. She said she hadn't seen someone with tics as as mine in a long time.
Who the f@ck told you to do that. A Tic, me both I don't know.
I watched you struggle to control them. I'm watching you fight now to hold them. I want to know why, Joel wants to know why, your friends want to know why you do much to make sure your daughter and sons, and everyone else, even the hamster has what they need to help them get tough a day but you do nothing to give yourself that same relief. I want to help you.
I couldn't answer her. I couldn't say because I'm not worth it, I don't matter, I just need to make sure everyone else is ok. I don't matter. They are what I care about. I am not worth it. But it's true.
I didn't need to say it. She knew it, Joel knows it.
I wasn't prepared for this. But Joel, Star and my buddy were. They planned this whole thing out. They asked the doctor to observe me as well as her.
She said I want to see your daughter and you. I want to help you , and working on ways to help you manage and maybe calm our tics. I want you to to matter as much as they do.
I felt like I got hit by a brick wall. I'm pretty sure I had an anxiety attack.
I feel like I should be mad at Joel, this was about my daughter not me. I don't matter she does.
But for the first time in my life I have someone who does think I matter.
Honestly I don't remember much of the night after that. It was late when we got home. We had a fire and cigar. I didn't say much.
He said I know your mad at me but I don't care. You need this as much as she does.
He went to bed. Now I'm sitting here, to numb to be mad, to numb to fight.