We are alive
In the last two weeks I have received a spate of emails asking if we are ok. I am not sure the answer to that, but we are alive, and actually, on a bit of an up swing.
I have always tried to keep this blog about me and Pearlsky, inclusive. I don’t talk about my personal life, that is not what this is about. The past year though, that life had gotten out of control for many reasons. And that has thrown everything off. I am starting to feel like it is back under control. Sort of. Kind of.
In brief, I got very depressed. Not clinically (or so my machismo says), but probably close. I was pulled down a rabbit hole, albeit I went willingly. On top of that was the incident with Pearlsky at school (more on that in a bit), stuff with my immediate family, my health, work shit, and you name it. All of that AND the usual Pearlsky stuff that this blog is made of.
Several things have come together to pick me up. I have started two new business ventures, my primary one started failing because of several issues (some in my control, several not). I now have two other ventures, and wouldn’t you know it, the old mainstay just got two new contracts and is back on the upswing. I will be talking about the new ventures; they very well may involve all of you. And, of course, special friends have helped.
I was searching for a book for my step daughter (don’t ask, and no, you don’t know about her, and no, she is not really a real step daughter, but me and her feel she is, so there) and when I bought it for her, my first thought was that I should read it as well. At this point I have purchased six copies and gave it to people who have all thanked me. If in your life there is anybody whose actions have an effect on your actions or behavior, then it is a book for you. If someone else (typically a spouse, could be a parent or child, close friend, etc. and often addicted to something) does stuff that makes you crazy, paralyzes you, makes you worry above and beyond, then you may benefit. Just putting it out there … Codependent No More.
The school district agreed, actually suggested, getting Pearlsky into an adult program as soon as possible after the incident last summer. We visited several and liked two of them. The school sent “packets” to them both. At first there was great interest and all looked like a “go,” then bizarre silence. The programs would not return calls or emails. From me. From the school. From my advocate. From my big time lawyers. We have no idea, and if you are saying “what the fuck?” … so are we. I am meeting with the lawyers next week. Will keep you informed.
No, no R.V. yet, but a touch of movement on that. More soon.
I’ve asked here about those of you dealing with peripheral neuropathy since there is a connection with it and the amino acid Pearlsky needs to survive. Now it is associated with other issues, other kinds of nerve pain, and even with ALS. If you have any of those, feel free to contact me … I have information for you. Really. Especially ALS (Lou Gehrig’s disease).
I mentioned some new businesses. I have started a special education advocacy group. I have a team of people (six so far) with vast special ed experience. Most of the laws and regulations are based on federal law (IDEA, ADA, NCLB, etc.) and the state laws and regulations are easy to find. If you are having issues with your school, you may want to let us know … never know what we can do for you. Let’s face it, I can write a pretty good email.
So yes, I am back, I hope. I miss this blog terribly. And to tell you the truth, I have been missing me terribly.
I can beat this. I will. Thanks for caring. Especially those the last few weeks, sorry I did not return the emails, I will do better. But again, thanks. It means more than you know.
It is good to hear from you. SD as part of an advocacy group = AMAZING! I am pulling for you on the RV front.
And we make our own families, your step daughter is lucky :).
Thanks for the good words. It is wonderful the feedback I am getting when people hear that I am now a special education advocate. Even some of the clients appear happy!
It is so good to hear from you! I’m glad your back. Now don’t disappear again. Please?
The amino acid treatment…is it possible it would work for fibromyalgia? I have a couple friends who have it, and any kind of treatment they could try would be appreciated. Or is that kind of nerve pain completely unrelated?
I’m glad things with you and Pearlsky are moving in the right direction. I hope they continue to do so. And don’t disappear again.
I will email you directly, but it does work with nerve pain with fibromyalgia for two people I know using it, but none of the other symptoms.
Thanks for the good words.
Good to see you back SD 🙂
Thanks. Sometimes you just gotta dig out of that hole.
I’ll just second what Kevin said. Thanks for the update, and while I’m so early on in the special education journey (my son will start kindergarten in the fall) it’s nice to know I’ll have someone who understands to turn to when I eventually need the help.
Absolutely. Let me know how I can help. I am going to put together a guide for the beginning of the journey. My first piece of advice is to save all tests, files, letters, etc. Not only from doctors, especially anything the school produces.
Glad to see you back; I was worried about you and Pearlsky.
Thanks Jo. I appreciated all the thoughts that were out there.
Been reading your blog for a while (I have a special needs son and have learned a lot from you) – was worried about you and Pearlsky – glad you’re back. About the amino acids: Would it help someone who has terrible neuropathy pain as an after effect from chemo? Just wondering…and hang in there…
Amy
Thanks for the good words. It very well might work on chemo induced neuropathy … I will email you directly.
I have been wondering about the amino acid. Do you think it could work with degenerative neuromuscular disease like Charcot Marie Tooth? It is considered a form of muscular dystrophy that my son has with my son (now 14).
I looked up the amino acid and Charcot Marie Tooth (actually, we don’t “look up” anymore, I “googled” it) and found several trials and reports on it at NIH and more. I will email you privately.
It’s always good to read you here. Now keep it up — don’t let the muscle go slack. We depend on you.
Holy guacamole SD! I was beginning to panic over here! Whenever you get sucked down a rabbit hole remember to reach out to the people here. We will all band together to pull you out!
I’m so sorry life has sucked for you sooooo badly lately. You are definitely due for an upswing!
Now, about that amino acid — I have a friend in constant pain from nerve damage from a car accident 20 years ago. Would it be any good for that?
Welcome back!
And, something I read in a book long time ago: “There’s your biological family and your logical family and most of the time they are not the same people.” You lucky “step daughter” is clearly part of your logical family.
I’m so glad you’re back SD! I missed you and Pearlsky. When you get your RV, make a trip to Michigan! I’ll show you both a good time 🙂
I want to thank you. I graduated this past weekend with my Bachelor’s in Social Work with a minor in Psychology. I’m starting grad school next week and will graduate next year with my MSW. When I first found your blog, I didn’t know what to think. I was upset by your comments about social workers. But then, I really started thinking about why you felt the way you did. It’s helped me grow as a person and as a social worker because it’s challenged the way I see the social work profession. I may not fully “get it” because I’m not a parent, but I’m not ignorant. I reach out to bloggers like yourself all the time to understand the frustrations and struggles you have to deal with on a day-to-day basis. For the role you played in my education, thank you. Yes, I’ve sat through the classes, read the books, etc., but you and others like you are the real education. The things that really got me thinking were stories like your’s and Pearlsky’s. Thank you for helping me “get it”.
At the same time, I feel guilty because it’s not your job or Pearlsky’s job or any bloggers who have a disabled child’s job to make me “get it”. Nevertheless, you did play a role and I still wanted to thank you.
No, it is not my job to make you “get it,” but it is in my best interest to help you “get it.” And the best interest of everyone in “my” community.
Congratulations on graduating and good for you that you continue on with your education. Good luck!