Warning: This Post is in exercise in self-pity.
I've been a really strange mood lately. I want to be alone. I don't want anyone talking to me because I'm afraid I may bite their head off. I don't want anyone asking me any questions about what I'm doing...what I've been doing...what I'm supposed to be doing.
Yet, when I am alone I'm still not particularly happy.
I am full of thoughts of self-doubt --constantly questioning my parenting decisions.
I am feeling bad about what my kids are facing.
Feeling guilty that the latest medicines that we are trying with Blue -are not working the way that I hoped they would.
I am so happy with my blog and my facebook community. I love the work that I am doing in helping others feel less alone. But then I start looking at our financial situation and all of the things we can't do because I don't bring in an income, then I start with the guilt. We are stuck in the small breaking-down, falling apart house, because we don't have a second income. I am driving the 10 year-old car with all of the funny noises, because I haven't done anything to change that. I am writing and doing what I love, but I can't brush away the thoughts of feelings of, you need to get something published.
You need to be making an income.
What the hell happened to you?
You used to be so independent!
I start thinking about my friendships. I am blessed to have a lifetime of friends all across the miles, from West Virginia, to California. My best friend lives a few hours away in Houston. I love her. She is my sanctuary. Literally, she provides respite for me every couple of months. She is the one person that can say anything to, without fear of judgement and she can do the same. We can talk and text message every day with our most hideous, most ridiculous thoughts and feelings and then laugh and make jokes about them. Then days can go by with no contact, but I never doubt our friendship.
I have extremely close friends in California where I grew up. I have friends that I have known since I was in middle school, high school friends, friends from my early 20's and so on. I am proud of these friendships...how no matter how much time goes by without contact, when we do talk or see each other, it's as if we just got together yesterday. There is no animosity about the different directions our lives have taken and how little time we have to get together or call each other. I love, value and treasure these friendships.
Most of my girlfriends from L.A. have at some point taken time out of their lives to come here and we have great visits together. Or when I go there, we must see each other and our time together is just...like home, warm and familiar.
Then I have my virtual friends. I have developed some great friendships through blogging and facebook. People who think about me...send me special notes of love and support. People who make me smile on an almost daily basis. Women who get EXACTLY where I'm coming from because they too are parents of kids with special needs. I can make quick contact with them when it is convenient for me from my laptop or phone. In fact, this ability has made it so convenient that I seldom actually have conversations on the phone. When I do talk on the phone, I am almost always interrupted by one of my kids, my mother, my husband or even by another phone call...like from the school.
I have somehow let my friendships with local friends dwindle down to next to nothing, which I feel really guilty about. I wonder if I've lost these friendships. Living in Texas has been the only time in my life, where I have actually lost friendships and been disappointed by people who I believed were friends. Sometimes I wonder if it is connected to being a special needs parent. Some people don't get-it...don't want to get it...get sick and tired of hearing about it.
I have a group of friends I used to entertain all the time here at the house. We would eat, drink, laugh and talk into all hours of the night. At some point Blue would become extremely stressed out and ask me,
"When are they leaving? It's time for everyone to go home so I can go to bed!"
At which point, I would say, "They aren't in your bedroom. Your bedroom is upstairs. Just go to bed."
"I can't!"
So slowly the parties have slowed down. The invitations have slowed down. Lives have taken different directions. Friends have had babies, which certainly changes the dynamic and trajectory of your life. Others have been promoted on their jobs, family dynamics have changed where both spouses are now working outside the home, which means that time for friends and entertainment has changed.
But when I'm alone and in deep thought...I question myself.
Did I do something or say something?
What happened to our friendship?
Why am I so paranoid?
I'm a good friend...when I have time to be one.
I am now taking care of my mother who is living with me. Though she is only 72, and has relatively good health, she still depends on me to help her take care of all personal business, take her to all of her appointments, both medical and otherwise, take her shopping and entertain her at least once a week. Otherwise, she would never get out of the house. This takes away from my time to get together with girlfriends.
I am no longer going to workout on a regular basis, which means I don't see my Y -workout girlfriends as often. We do get together every couple of months for lunch or coffee and catching up. I joined another local recreation center, which is closer to home. Yet, I can't seem to make it over there with any sense of regularity.
The last time I had lunch with my workout girls, they asked me to come back to the Y to our Yoga and Zumba classes. I really want to, but as summer approaches, I doubt seriously if I will have time to work out regularly.
So basically, my life is totally out of balance and I have to figure out a way to somehow close some of these gaps and get my sh*t together. All of this while the summer is approaching and I have to figure out ways to keep the boys busy and away from each other as much as possible. I'm looking at camps, therapists, social groups and vacations.
Oh yeah...and then there is the house and all of the many little projects that need to be done around here.
It all seems so impossible.
I guess I just have to make a list and try to do one-thing-at a time...
one-day at a time.
I wonder how many days I have left where I can say that?
Life is short and yet it seems to be going by so fast!
If only I wasn't such a scatter-brained, unorganized, discombobulated mess.
Any advice? I'm always dishing it out yet, I'm feeling like my own life is a mess.
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 121 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago