The Secret of Living

Quietly

A quiet room
Music in my ears
Listening to so much noise
Trying to fill the space inside.

Typing words
on an empty page
Empty words
for the empty space
in my heart tonight.

Outside I smile
Say hello goodbye I’m fine
Knowing that no one will see
no one will find me here.

A quiet room
Music in my ears
Listening to so much noise
Trying to fill the space inside…

The Middle Of Nowhere

I stopped writing last fall.

I know I haven't written on my blog since last September. I was right that going to work would be a challenge. It has been. I was right that I would not share work stories. I still won't. I was right that this would be a hard year. It has.

But I didn't mean to stop writing. I just... stopped.

Not just here, but everywhere. I do not write in my journal. I didn't write any stories or poems or thoughts or anything. I have written in a journal or diary since I was a child. I have written poetry since I was a child. I have written stories since my teens. I stopped writing.

It took me a long while to figure out what was happening with me. Not that I was busy but simply that I didn't want to write anymore. I didn't want to talk about what I am feeling. Or not feeling. Or anything. It won't change anything. I've always written as a way to figure out what to do, how to handle life, how to keep walking. And I stopped writing.

I recently read the lyrics to a song from "Dear Evan Hansen". It begins:

Have you ever felt like nobody was there?
Have you ever felt forgotten in the middle of nowhere?
Have you ever felt like you could disappear?
Like you could fall, and no one would hear?

The middle of nowhere. 

This is where I have been and where I am. I have disappeared and I have fallen and I am fairly certain nobody has heard or remembered us. 

And I am not certain I will find my way back from nowhere. Or if I can even care if I do. 

Hebrews 12:3 says: Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

and I read this again and say... I have grown weary. I have lost heart.

And this is why I stopped writing.

Writing means trying.

And I have stopped trying. 

I am in the middle of nowhere, and where I am, I do not even feel God's presence. I can tell myself... He is here. He promised never to leave or forsake me. But I know how I feel. I feel alone.  

...

I wrote this. The first thing I have written in months. It isn't well written, it isn't polished, it's just the truth.

But even as I wrote it, I wondered... is this me trying to try? And will I press publish on this? It is more honest, more self-revealing than I usually am these days. I re-read Hebrews again and try so hard to let go of myself and my fears and let God in instead. 

The song I mentioned earlier continues on a hopeful note:

Even when the dark comes crashing through
When you need a friend to carry you
And when you're broken on the ground
You will be found

So let the sun come streaming in
'Cause you'll reach up and you'll rise again
Lift your head and look around
You will be found

Maybe I will publish. Maybe not. Maybe another day. Maybe today. And someday... I will know in my heart, as I already know in my mind... I have already been found by God. I just wish I didn't feel so alone.

Changes

I haven't been writing, though life has been busy. I was about to take the English praxis (spoiler: I passed). I went into August without a job, so I decided to start subbing.

You could have knocked me over with a feather when a principal called two weeks into the school year. I interviewed. Then a week later, I interviewed with personnel. And was offered the job. (I took it.)

So now I'm teaching. I get no sleep. I'm losing weight very quickly at this point (the school has stairs. My legs are getting stronger.). And I'm figuring out what I'm doing.

But that's about all I'm going to write about that. There won't be any work stories, no oh boy, this kid... etc. Nope. It's too hard to say anything without touching on someone else's story.

This is my story. My story is that I got a job and I have entered into one of the hardest years of my life. I'll do well or I won't. Time will tell.

 

 

 

Things I'm working on now

1) I'm supposed to be packing and leaving because I'm taking the English praxis in the morning in nearby big city and I have to be there early, and I need sleep, so we decided I could go tonight and stay in a hotel.

And that there is a totally run on sentence. So much grammar and language and more stuck in my head just now. I may not pass but I have really enjoyed getting ready, which might make me very very strange. I re-read a bunch, loved some of it, found some of it to be even weirder than I remembered. The best part of this has been the new horizons. When I was in school, we didn't read much African-American poetry, so I've been reading a lot of that. I read "Their Eyes were Watching God" by Zora Neale Hurston, and that was a bit difficult for me. She used a lot of dialect, but after a while, it got easier to read. Mostly it's been the poetry that has been a incredible blessing to me, as I've read so many poets unknown to me before. I'd read Maya Angelou before, and some Langston Hughes, but I never knew that Alice Walker (The Color Purple) had poetry. I'd never heard of Countee Cullen or Gwendolyn Brooks or so many others. It gave me a fresh perspective on many things. Even if I don't pass, it was so worth reading more.

2) Robbie has been wearing his new glasses more and more. We have been primarily working on how to handle them, how to put them on and off, how to ask us to put them back in the case when he wants them off, all of those "keep the glasses safe" skills... I don't know if they're helping him or not at this point. We're trying to get to full days on, but that's hard for him. I think we'll end up with mostly on, but with short breaks all day.

3) We're working on some new vocabulary. Robbie will bring his iPad to me so I can unlock it for him. For many reasons, he isn't allowed to just pick it up and play with it. We need to know how much screen time he's having. On top of that, I have it locked so he can't get to certain parts of the iPad, such as administration settings...

So he'll bring it to me and just shove it in my face. I was working on getting him to ask instead of just trying to hand it to me. For a long time, I had to prompt him to say, iPad please. Then he got so he'd say iPad, and I'd say, ask with a full sentence. And so on. At this point, I've been teaching him to say Will you unlock the iPad please? He knew that it was locked (yocked still - I sometimes wonder if he'll ever get that "l" sound..) so I keep explaining that he needs to say un-lock so I can take the lock off. Slowly this new word is entering his vocabulary.

You can imagine my surprise today when he walked up to me with the iPad, and requested "Put code please." Code???? How does he know that's it's a CODE. I mean, that's not a word we've mentioned, at least not often and never to him directly. The screen says Passcode, so now I'm wondering if he knows how to read CODE. I hope so, but it's not in the norm for him to suddenly use a new word. Not that I'm not thrilled to hear it, btw. It's awesome!

4) Cats are not allowed to be on the kitchen table or the kitchen counters or the kitchen island. They are allowed on the chairs, the buffet, any bookcase they can get to, the sofas, the lazyboy, the beds, etc. But not the kitchen table or the kitchen counters or the kitchen island. I have standards after all, and where I prepare food or eat food? No. (If I am using the buffet to have extra room for food, I clean it again and keep the cats off!)

The cats love the buffet because they can see out the French doors into the backyard. If I put it off limits, I'd be spending my entire life teaching them not to go there and I'd never succeed.

Finn, sitting where he's allowed to be!

But thinking about what he'd like to do instead...

But Finn thinks that he should be laying on the table by me when I'm using the kitchen table to study or pay bills or whatever...

How about if I just get up here a little bit? Maybe she won't notice...

(Or maybe she'll take a picture and then tell you no! again.)

He'll learn eventually. I hope sooner than later.

 

 

Slow Down, Summer

So... how about something a lot lighter and more fun than deep thoughts about how life is never the same after you have a child with special needs? I've got it - Random thoughts from this summer!

I don't know why but Robbie still wants to go out in the hot weather and jump on the trampoline. This summer I rarely go out with him, but sit on the sofa with the window open instead. The bugs are so bad this year that we have to spray if we are going to even step into the backyard, so that has been a problem. I haven't been near bug spray in a long time and with the recent bout of hives, I've been avoiding everything that can potentially be a problem for me. So far, Nina has been home and she has taken him out to the patio and spray his legs for me. Note to self: teach Robbie how to spray his legs, with supervision. That would solve this problem!

Robbie is finally learning to brush his teeth, but still misses the top (bottom?) of the upper molars. We continue to supervise and encourage him to get them but he just doesn't flip the toothbrush over. Brushing your teeth with the back of a toothbrush doesn't really work.

I finished two books this week. Wonder was absolutely fabulous. I re-read it and then read every extra e-book chapter I could locate for it as well. The only problem is now I don't want to see the movie. There is no way that they could have done it justice. The other book was Apollo 8. It started out really slowly, so slowly that I put it down and read Wonder instead! But when I returned to Apollo 8, it finally grabbed my attention and I enjoyed it a lot. I learned a lot about the first trip to moon orbit.

I found a new bird guide for K for Father's Day. (shhhhh. don't tell him.)(He doesn't read this blog often...) It won't arrive until long after the day but it will come before his trip to a conference being held in the Canary Islands. I am so excited for him to be able to go there. His maternal grandfather emigrated from the Canary Islands to Cuba. K gets to visit where some of his ancestors lived! We have no way to get more information on this grandfather, since he died when K's Mami was young, and his name is fairly common. K's uncle went and tried to find out more about his father but was not successful. At least we know where he emigrated from.

I can't believe it's almost Father's Day. This summer is rushing by so quickly. Father's Day is also our 29th wedding anniversary. Note to those considering getting married the day before Father's Day... every so many years, your anniversary will hit Father's Day! I wish this summer would slow down a bit. I'd like to enjoy it more.

I am currently sitting in a study room at the library. I am still studying for the Mathematics Praxis. I haven't found a job yet (praying I will soon!). I find that I have so much more desire to... clean house, write a blog post, whatever... right now, since I really should be studying. Yesterday, I had the urge to practice piano! I hadn't touched the piano in months, which meant that my scales were absolutely abysmal. I also discovered that I need to get the piano tuned. Something else to do instead of studying, hooray!

Back to work. I continue to use a pomodoro timer (tomato-timer.com) which helps me to stay on task. 2 minutes studying, 5 or 10 minute break, 25 minutes studying, 10 or 5 minute break (I alternate between the short and long break), and so on. I have probably mentioned this before, but it really does help me. The long timer just went off, so back to integrals...

When n-1 doesn't apply

A few years ago, somebody I know on Twitter came up with the expression "n-1".* That's what you have when you have 3 children and somebody takes one off your hands or the eldest goes to a play date or to school or whatever. The number of children remaining in your home at that point are "n-1". The point of the equation is that life is so much easier with n-1 children.

As I looked back on my parenting years, I could see how this is true. I even thought it was true for me for a while. Then I realized that there is something in my life that trumps n-1.

And that is having a special needs child.

I am currently living in what might be referred to as n-2 land, since my eldest two are now adults. They still concern me, of course. I'm a mother. But the day to day keeping the child alive responsibility has transitioned to being that child's concern.

But n-1 still doesn't apply. Life isn't easier with n-1 when you're dealing with special needs. I have been trying to figure out why this is for a while now. But today I was talking with a teacher and I said something that I want to write down now: "The mental load of parenting a child with special needs never stops, not for a second." I wish I could say otherwise, but there is always this running commentary in the back of my head - when is the next dr appt, how are we doing, what are we doing, why did he throw the iPad? why did I push him too far, next time I need to do this differently, how can I encourage more independence? how can I teach him not to put the eggshell shards in the bowl? and always... How will we keep him safe when we're gone?

That's a sample. It's actually worse. It's not worrying - that's an entirely different aspect to the commentary and one that I work hard at releasing to God. It's just the logistics. And it never ever ends.  At times, it truly wears me out. Parenting in general can wear you out (been there). But this is a deep bone-crushing weariness, such that I've even had to stop and doublecheck that I'm not depressed! Most of the time, I'm not. I'm just carrying too high a load and it's hard to put the mental side down. Robbie is at therapy right now. I'm not taking care of him physically right now. I wasn't even directly thinking about him.  (Actually I was trying to study math, but these words were jumbling so badly in my head that I decided to write them down first.) But I've set two alarms to remind me when to go pick him up (solo this week and next - oh joy).  And I was also figuring out when the best time of day is to take him to the optometrist to try on glasses (oh boy. keeping those on will be fun...)

This might sound a bit self-pitying. Or maybe you're thinking - that's just what parenting is like. It wasn't like this for me. I know I felt differently with my elder two. They had their own issues, and still do. They're human (like you and me!). I've had a child who I would definitely classify as high needs - and it isn't Robbie. Darling girl is still high needs, for that matter. Still very deeply emotional, still too perceptive, still highly sensitive. But brightly aware of the world, intelligent, happy, competent... There were times I wondered what I was doing. But I never had this endless commentary.

It is quite freeing to me in a way to realize that life is hard. It is my life. And I wouldn't give Robbie away for a zillion bucks. Though if you'd like to volunteer to keep Robbie for a week next summer so K and I can celebrate our 30th (by ourselves?), feel free...

*I can't remember who came up with this. It might not even be somebody who I know for sure on Twitter but somebody who knows somebody I know... or something like that. It is a viable math equation and that is all that matters.

The End of April

April showers bring May flowers and after the rain we have been experiencing, we'd better be getting a whole lot of flowers! Of course, that would probably mean I'd planted some. Ha. Like I plant anything that lives! I have thought about getting a planter out front though. I used to enjoy helping my mom each spring when she'd plant the big huge iron pot that she and Daddy got from my grandparents a long time ago. Happy memories.

I am drowning in homework and prepping and getting ready for job fairs. I have decided that I need to win the lottery instead and stay home with nothing to do. K and I have been too busy and we just keep alternating keeping the house in adequate condition. The bar has been lowered from clean to adequate. Sad.

I have less than 2 weeks to finish everything. And in less than 3 weeks I graduate. This is good news.

I have less than 2 weeks to finish everything. Bwahahahahahahahahaha... so I'm writing this instead?

K is not feeling well so I am at home with Robbie. I'll go study more this evening. In a little bit, I plan to finish my field experience videos and then all I have left for my EDCI class will be the final exam, the graduate paper, and the signature assessment (which is a 3-5 lesson unit plan. Not all that hard. I've been thinking about what I'm going to do, so I already have a clue... Hey, that rhymes.).
I have some thoughts that I keep trying to put down on paper for more serious type posts but that's not going to be today. Nina sang at two concerts this past months, and she is beautiful and we're loving how happy she is right now. Mac is working and enjoying his job at the moment. And Robbie is doing better, kind of. We just keep working at getting him to eat enough. The appetite stimulant worked (too well) and we got his weight back up, but had to stop the stimulant again. It's an option if we have too much weight loss again but we can't have him eating so much either. Where is the healthy middle of this? Step by step, we'll figure it out.

Summer IEP meeting on Tuesday. We've heard that there may be a curve ball but no official notification, so we'll see. I'm trying to stay patient, calm, and purposeful in my thought life instead of imagining the worst. Onward to May and then summer. I'm looking forward to a bit of time to myself before I actually land a job. I know that once that happens, I'll be busy getting ready for next year...

Random Thoughts after Decorating Cookies; Plus a Prayer Request

Powdered sugar icing tastes good, dries well on sugar cookies, and holds on to decorations very well.

It also has disadvantages (other than a sugar high from all that concentrated sugar).

1) When measuring powdered sugar, and when sifting powdered sugar, be aware that it will go EVERYWHERE. You will have to clean every surface within 6 feet of any activity done with powdered sugar.

2) When icing cookies, the icing will inevitably run out when you have less than 8 cookies and more than 3. Three is the number that I would say, oh forget it, and just eat the cookies without icing.

3) When making a small batch of icing, you will forget you are supposed to add the extra milk by the teaspoon, because you used a tablespoon while making a triple batch of icing. This will result in powdered sugar glaze instead of icing. You will then have to add more powdered sugar. See point #1 for the rest of this point.

4) After completing the cookies, you will have leftover icing. You must clean this bowl immediately because the icing will harden to the consistency of petrified rock, and you will have a really hard time cleaning it later.

5) It is so very sad if you drop and break an iced cookie on the floor. (5 second rule.) (yummy.)

6) It takes twice as long to decorate the cookies than it did to bake the cookies in the first place.

7) You must also sit around protecting the cookies from the cats while they (the cookies) dry enough to put away. Especially when you have a kitten who has finally mastered jumping as high as a chair without falling back to the floor instead. (Though he still falls back to the floor when attempting a higher jump, which is quite hilarious, and we actually hope he never masters jumping well.)

8) I do not remember the last time I had to decorate cookies. I usually outsource this to young adults, but they were not available this time.

9) Upon completing the cookies, you will survey the damage to the kitchen, eat some lunch, and clean up. Then you will sit back and relax.

10) Until you suddenly realize that you haven't made Robbie some GFCF cookies yet. And that's not going to go over well with him, so I will have to make more cookies when I get back from picking him up at school. Thankfully I have a couple of mixes that we like in the pantry. This is a great spot to lead into my prayer request, because I'm hoping he will eat many cookies...

Prayer Request:

Robbie has been losing weight (and does not have weight to lose. He's getting thin.). He's now taking an appetite stimulant for the next week to see if that helps. My prayer request is that we can figure out why he's not eating and if there is an underlying health problem, that we will find it. Thank you!

The Miracle Success Story

If you’re looking for the miracle success story, this isn’t it.

If you’re looking for the key to recovery from autism, this isn’t where you should be looking.

If you’re looking for someone like you, it might be the place.

I read a lot of blogs, especially autism blogs. I used to read more of them. I was looking for the next thing to try. I was looking for hope for our future. I was looking for someone to tell me that we could make it. But at this point, we’re not the miracle success story, and definitely not the success story that parents want to see.

What made me start writing this particular post is that I keep reading a type of sentence on different autism blogs. It’s the “we’re succeeding because we did all the right things that gave our child the keys for success” sentence. It always stops me in my tracks for a second.

I’m not saying that they are wrong. It’s absolutely right to keep on pushing, to do the things, to get the therapy, pursue the things that help, to absolutely advocate for your child. It’s just that… no, that’s not the reason, at least not entirely. You can do the right things, all the right things, the perfectly right things, and still end up where we are.

I know because we did. We pursued all the right things. And it didn’t work out the way we hoped.

You can look at our story as intently as you want. I’m sure we weren’t perfect. Nobody is. But we were as good as any other parents who work hard for our kids.

I’m not saying that all the right things hasn’t helped our son. It has. He has come a long way. And it will keep helping him. We will never stop trying to help him.

But at this point, our journey isn’t going to end at the high functioning end of life. It’s in the “we did everything right and we’re going to have to take care of our child forever” side of the story. It’s not an easy thing to accept. In fact, at this point, it’s impossible for me to accept it. But I am also realistic and know that unless God does a miracle, this is our story.

Not many blogs I’ve seen will say that.

But it’s the truth. And sadly, not everyone will get to be the miracle success story. I wish we were. How I wish.

I hope you are that story. I hope that you find the key that opens all the doors in your child’s life. I hope that I get to find it too, someday… just a bit of me keeps hoping. Always hoping.

Hugs

It's amazing how much a hug fills your spirit. That physical contact can be just what you need.

I went to a wedding yesterday with K. Beautiful bride, fabulous family, amazing occasion. I love weddings.

I went for three reasons: 1‚ the wedding, of course! 2, time with K - always a plus. and 3, friends and hugs.

I suppose my friends thought I was joking when I said I had decided I was going to collect hugs at the reception. But I was completely serious. I haven't really seen anyone in ages and I doubt I will see many people for a while again. I am slogging through this quarter and oh so tired of it. I do like the teaching part mostly, but I am tired of jumping through hoops.

The latest hoop I've encountered? The class I need? to graduate? in MAY? that I was supposed to take in the spring? It's not being offered. Even though it's been offered in the fall and spring for years?

Let that sink in.So I called my advisor and she's figuring it out. Okay...  So hugs were just what I wanted, needed, and thankfully, my friends are very willing to give them too.Happy hugs to you if you need one!