Having a public forum where you share some of your deepest feelings and emotions can be dangerous. I totally went left the other night on this blog. I was feeling completely overwhelmed and pissed off, so I purged all of my feelings in writing. I don't have a therapist (dumb I know). I have some really good friends and family members who care, but no one knows everything that's going on in my life. Besides, I can't say everything in one conversation. I don't often get to have a telephone conversation without it being interrupted. It was therapeutic for me to get it all out.
When I went back and read it again the next day, I thought to myself, what the hell did you do? My husband is going to be pissed when he reads this. Everyone will know how completely nuts I am. I know that's not really a newsflash. I kind of sound like I'm whining and complaining a lot. I don't want people to feel sorry for me. I just wanted to get the feelings out.
Hundreds of views later, I couldn't take it back. Apparently, my feelings connected with a number of you who said it read like it was your life. That's always a really good thing.
Going back and reading it, allowed me to see exactly what is happening and what part I am playing in the process. Life doesn't just happen to you. You usually have a part in what you are allowing to happen. This is especially so, when it is a pattern of things that seem happen more than once.
There are no mistakes really.
Failures are an opportunity to learn.
There is a lesson to in every trial we go through.
I am learning every.single.day.
Second, I am feeling pressured to make Red gone like yesterday, as if that will solve all of our problems.
The thing is, he's a person. A complicated person and this is a complicated situation.
I can't make everything happen overnight.
I have been working on this process diligently, for months and I am on the right track.
When you are dealing with government agencies, things take time.
When you are dealing with a less than stable young adult who has rights, but not all of the abilities that go along with those rights, nothing is simple.
Third, I need to give myself some credit.
When I went back and read it again the next day, I thought to myself, what the hell did you do? My husband is going to be pissed when he reads this. Everyone will know how completely nuts I am. I know that's not really a newsflash. I kind of sound like I'm whining and complaining a lot. I don't want people to feel sorry for me. I just wanted to get the feelings out.
Hundreds of views later, I couldn't take it back. Apparently, my feelings connected with a number of you who said it read like it was your life. That's always a really good thing.
Going back and reading it, allowed me to see exactly what is happening and what part I am playing in the process. Life doesn't just happen to you. You usually have a part in what you are allowing to happen. This is especially so, when it is a pattern of things that seem happen more than once.
There are no mistakes really.
Failures are an opportunity to learn.
There is a lesson to in every trial we go through.
I am learning every.single.day.
By re-reading what I wrote, I learned so much...
First, I need to slow down.
First, I need to slow down.
It made me look at myself and say, 'What in the hell are you doing?' Obviously, way too much.
I am allowing too many people to put too much pressure on me, not to mention the amount of pressure I am putting on myself.
I can only do one thing at a time.
I have got to get better at saying no.
Not just no but, 'Hell no! I'm not doing that! Do it your damn self!'
I am allowing too many people to put too much pressure on me, not to mention the amount of pressure I am putting on myself.
I can only do one thing at a time.
I have got to get better at saying no.
Not just no but, 'Hell no! I'm not doing that! Do it your damn self!'
For example the other night, Blue comes into my room at 9:30 asking about me warming up tacos for him and his friend. My first impulse was to say yes, because that's what I do. This time, I stopped myself. I thought, I don't want to do that. What's more I don't have to do that. I'm tired! I've been experiencing extreme fatigue for days. I'm relaxing right now. I'm not changing my program just because they came in here hungry this time of night.
"Make yourselves some corndogs! Have some yogurt, or some popcorn. Whatever it is, get it yourself."
Second, I am feeling pressured to make Red gone like yesterday, as if that will solve all of our problems.
The thing is, he's a person. A complicated person and this is a complicated situation.
I can't make everything happen overnight.
I have been working on this process diligently, for months and I am on the right track.
When you are dealing with government agencies, things take time.
When you are dealing with a less than stable young adult who has rights, but not all of the abilities that go along with those rights, nothing is simple.
Third, I need to give myself some credit.
- I applied and got him qualified for SSI. Now that he is 18, he qualifies based on his diagnosis, and his own income and not ours.
- That helped him qualify for Medicaid to help with the cost of his healthcare and medication. That is major!
- We applied and he has been approved for services through DARS (Department of Assistive and Rehabilitative Services) which is going to help us get work on behaviors and obstacles that need to be removed in order to get himself ready for full-time work and therefore, independence. We met with his DARS counselor a few days ago. He offered to get Red a Functional Behavior Assessment.
- Then he will start working with a BCBA Behavior Therapist here at home, in the community and at school. If he happens to move during that process, the therapist will provide service where ever he lives.
I have a feeling when the behavior therapist comes, she will note that we are all giving Red a payoff with our reactions. The rules and structure need to be clear and enforced with everyone who lives here.
When it comes to my mom, I have arranged for her to use a car service for her physical therapy appointments. Next, I will look into her actually having a part-time caregiver. I can't always be 3 places at once. It won't be easy to get a 75 year-old woman to change her ways. Especially, when her behavior seems to be going more and more in the direction of childish, antagonizer every day. She is going to have to live by certain rules as well. I'm not going to continue to put up with chaos.
It turns out that hubby wasn't mad at me after reading the blog. He actually came home and asked me out for dinner. Since then, he has been trying to use a firm, yet milder tone when speaking with Red. I sincerely appreciate the effort.
In the meantime until Red moves, I am going to have to take things one day at at time.
I will work on accomplishing one goal at time, instead of worrying myself to death about every little thing.
As many of my dear friends from my Facebook Support group reminded me, some more subtly than others (Tonya), I can not control everything. I need to stop sweating the small stuff and let a lot of these grown folks in this house manage their own lives.
I have been getting a lot more rest in the past few days. I can see the peak of blue sky among the clouds, which is God's way of telling me, 'Everything is going to be alright. Trust me.'
- I have applied and qualified him for Autism services through our local MHMR (county mental health agency).
- This gives him a Case Manager to help coordinate services for him.
- He also qualifies for Home and Community Supports, a provider who will spend a few hours a week with him out in the community, taking him to the bank, getting a haircut, going grocery shopping, maybe even taking him on a date! That will give me some relief.
- We can now receive Respite services (someone to come into the home or take him out of the home to give us a break for extended time.)
- We also put an emergency game plan in place if I am seriously about to break. They can provide emergency respite if I need to get him out of here with a quickness on a temporary basis, before he actually moves.
It turns out that hubby wasn't mad at me after reading the blog. He actually came home and asked me out for dinner. Since then, he has been trying to use a firm, yet milder tone when speaking with Red. I sincerely appreciate the effort.
In the meantime until Red moves, I am going to have to take things one day at at time.
I will work on accomplishing one goal at time, instead of worrying myself to death about every little thing.
As many of my dear friends from my Facebook Support group reminded me, some more subtly than others (Tonya), I can not control everything. I need to stop sweating the small stuff and let a lot of these grown folks in this house manage their own lives.
I have been getting a lot more rest in the past few days. I can see the peak of blue sky among the clouds, which is God's way of telling me, 'Everything is going to be alright. Trust me.'
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.
diyalabs6192603 11p · 192 weeks ago
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Spoil your cat · 122 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