Bardic Blogging

I feel like instead of having so many spoons, it’s just a spork. You can use that spork as a fork, as a knife, or as a spoon, but you can’t always have it all ways. Some days you may have to only use it as a fork. Then when you do use it, let’s say as a spoon, it’s not quite spoon-like and maybe a bit different. Maybe you snapped your prongs and are forced to use it as a spoon where a fork may be better suited? Your unique circumstances will create a different utility in the application of your day to day life. Maybe you need a spoon but you can only pierce with the prongs of your spork that day? Day to day, how your spork is used is as unique as you are.

But maybe you resonate as a spoonie or something entirely different and that’s okay too. Sometimes it’s scary to share our thoughts with others, but if we don’t, we may not find like-minded people who resonate with us!

Only this moment... @amalyze

A: How do you figure?

M: Every time you do something for someone you are inevitably disappointing someone else—that also includes yourself. So it comes down to one thing:

Whose disappointment is easier for you to deal with?

A: Why not just focus on the happy part?

School basically said at our “not an IEP clinic meeting” because they changed it without notification, that outside data doesn’t matter and because my daughter had 2 good weeks at school, she doesn’t qualify for a 1:1, a smaller classroom, OT or PT because they can’t provide clinical stuff, and she doesn’t qualify for a therapeutic school. I hate the public school system. They will also continue using the saferoom and turn around room utilizing seclusion tactics because they work for the school.

Basically as parents, and her team of doctors, we have no say in how they choose to educate or not educate my child and can’t give us data of whether or not she is on task during the day because they can’t track that.

In other news, more neighbors being harassed by building management and want to start a petition to fire. I also met another parent who took their child out of the same school my child is in for the same issues with the addition of the school refusing to pay to evaluate their child, but complains of ADHD and autism symptoms. Basically state health care will refuse to pay because it’s got to come out of the school first unless the child is diagnosed before schooling begins.

Does that count as making friends? Kindergarten show tomorrow and letting the kid leave early. If it’s nice, we may try to venture to Davis Farmland or try to find something fun to explore/do. School was informed she will not take part in the extended school year because they can’t provide the consistency that my daughter needs where her ABA therapy place can. She’ll go 5 days a week to help prevent regression over the summer except holidays. The school could only do 3 days a week for 5 weeks and where she’s been more stable, I’m not about to let that slip due to the school’s inadequacies.

Raising a kid is difficult. Add in disabilities for the kid and no real treatment options except wait lists, ER stays and hospitalizations and life becomes a mess. The parent becomes a mess.. I am a mess.

We’re stable. For now. We have all kinds of support. The school frequently fails my child and it’s a job in itself to stay on top and monitor and document and report...

There are good things though! We finally got up on the list for neuropsych assessment. We completed that today. We also went to a restaurant and ate as a family and then had some fun at a trampoline park. Sure we could have driven an hour and let her attend school for two hours, but I think what we had in mind was way more fun! We wouldn’t have done this before medication. I’m not sure we would have made the neuropsych appointment safely. So those are big wins!

Our team is constantly on us about self care and they are right. I still game but there’s still a lot I yearn to do and don’t have the emotional or physical energy for. Going to the gym is one and I need to stop making excuses because I’m told it will help with my fibromyalgia and stop my joints from dislocating. Playing guitar. No real reason not to except every time I pick it up I’m interrupted to the point I can’t get away from the interruptions and it ruins my vibe.

Friends is another thing. I’m supposed to go make new friends and I just suck at it. Nothing ever seems to line up with current friends. Either I’m busy or they’re busy and it’s never stuff that I can just drop. My therapist thinks making new friends would be good for me. But I am becoming socially inept and off putting. I also feel like the kind of people I could become friends with live far away... as in other countries. *sigh* My child and partner have a hard time socially and I find since we’ve been rather secluded trying to get help for our daughter, my social skills are quite dismal. They both talk over me and interrupt so I’m just craving the kind of social attention that I need, but I’m too overbearing and awkward from not getting it. I’ve been in this place before but it’s still very difficult to crawl out of the hole.

Can I just go back to being agoraphobic?

I found out I do have a half brother. I’ve already lost touch. Him and his wife were losing her childhood home due to tax issues from previous family owning the property. She’s disabled and he takes care of her. They were supposed to go to court this month over it without any legal support. No contact since. I am in contact with his children and their mother. I’m an aunt and great aunt! Crazy! He’s not happy about my dad not being in his life. I don’t think he fully understands that our dad has issues. I hope he’s able to make peace either way. My dad wants to meet him and his kids and talk to them at some point. I found the court report citing my dad’s ex wife beat him and was cruel, which his ex wife confirmed, so a divorce was granted, but he was issued half custody of their child. She didn’t comply and kept threatening his parents so they told her to never contact them again or they’d take her to court again. Thus, my dad’s son never received support or got to know his dad as his parents got in the middle to protect him. He’s slow and gullible, probably on the autism spectrum as well with developmental delay. He also can’t read. I can see why they did what they did, but it still sucks.

I don’t know why but when I hit enter, it’s making huge gaps (using my phone and not a computer).

How to cope with anxiety and stress is not an easy task for me. My thoughts want to mull over whatever has gone wrong as if it’s being ground into my very soul and forcing me to relive horrid experiences over and over again not really accomplishing anything in a positive light, but pushing more and more negativity onto myself.

I get down on myself, and go over a frustrating incident including harassment from where we live. Don’t read on if stuff like this upsets you.

Working on decluttering and minimizing items--my closet looks so bare. Partner will be having surgery on his foot and will need to learn to walk all over again. Fused bones and such. It’s made me want to get rid of lots of things, also because I am only one person and cannot attend to all of these things every day. I need the simplicity if we are going to function as a unit during and after surgery... Even as we prepare it’s hard. Sometimes he’ll want to get rid of things that I do not, and vice versa, so we get stuck.

We just got the IEP in the mail. Once we sign, my daughter switches to full days and we will have to drive her in until busing is set up within 72 hours. I don’t know if this means we will stop ABA, ask for time at the facility to further help social skills, get a new person, or try to keep the same person but change the hours. It sucks that we have to be all professional, because I’m feeling sad if this turns into a loss of a therapist. We just click well all around and it’s been very beneficial and has helped my daughter improve so much. I’m afraid of losing the progress more than anything. We do have to meet with her BCBA to formulate a plan of action either way.

I was diagnosed with ADHD denouncing my previously long-standing diagnosis (over 15 years) of being bipolar. They couldn’t figure out why mood stabilizers made me psycho. Probably because they don’t help. I still get anxiety. I still get depressed. I still have fibromyalgia... The psych wanted to try me on adderal to start with. Funny thing I learned is that it is sulfate. I’m allergic to sulfates. People like to confuse sulfate with sulfa but it’s not the same. Sulfa or sulfonamides are antibiotics like bactrim. Sulfate is like sodium laureth sulfate--the stuff that makes bubbles in soap, or ferrous sulfate-- an iron supplement added to pasta, or taken as an iron supplement for anemia. Codeine is also a sulfate and I always wondered why I would break out in a rash and have trouble breathing when taking it. It’s a sulfate! Eye drops to numb your eyes to check for glaucoma also contain sulfates. The only version of sulfate I have been able to tolerate is magnesium sulfate. So now I need to return to discuss alternative treatment given my allergy. I’m allergic to both sulfate and sulfa. Also, if you have a sulfa allergy, you may react to migraine medicine sumatriptan and artificial sweetener splenda!