Tuesday, July 11, 2017

One Step, Broken Bones, and the Dance Between a Fighting and Defeated Spirit

I haven't updated in a while, but I'm sure that everyone is aware of my recent adventure falling down the stair (yes... ONE stair), my ambulance ride to the ER, and my fantastic 2-week stay in the hospital. However, because I'm trying to use this blog as a sort of documentation of my life for my kids to enjoy later and as a public platform to show that an imperfect life is still a beautiful one, I think it deserves an entry. It's taking days to write it because I'm tired, loopy on pain meds, and I have the focus of a goldfish. I'm sure I'll look back at this entry and shudder at the errors and rambling nature. But that's my reality right now, so, I'll just embrace it.

This experience has been filled with ups (Look for the good in even the worst of situations; it's not always easy to find, but it's there.), downs, unexpected problems, and tons of delays. When things are hard, and I am at my worst, it's easy to live in my hurt and self-pity. Why me? What if I had just done this one thing differently... maybe this wouldn't have happened? Why right now? Sitting in a hospital bed for 13 days certainly left me plenty of time to go there.

I would be lying if I said that I haven't had those moments. Each day, when PT pulled back the curtain hiding my door, I got a hollow feeling in my chest and tears started to well up. You can only fight them back for so long...  and when two people are trying to heave me up while I struggle hopelessly to hold my weight on a leg with a small fracture and damaged ligaments... the sharp burning pain and the shame and frustration of failure are just too much. Silent sobbing is no easier to hide than screaming when you are the one with tears and snot dripping to your chest. But somehow it seemed a little more dignified, so I kept the screams on the inside to echo around my brain with those why me thoughts.

The physical pain, without a doubt, is trying. Pain meds keep it reasonably manageable most of the time as long as I'm not doing PT or moving around too much. Elevating it keeps the excessive swelling down most of the time as well. However, the drugs make me loopy, tired, forgetful and unfocused. I fall asleep with visitors, I don't even have the focus to watch a full-length movie, I don't remember who knows what, and apparently, I like to repeat myself. ;)

What all of this means, is that I'm unable to do many of the things I normally do. I can't drive (obviously). I can't walk, cook,  take my kids fun places over summer break. I can't clean, run errands, or enjoy a long hot bath. I can't do homework. I'm working out the details of my incomplete because my professor (the tough grader who I've been busting my ass for) has been incredibly compassionate and supportive. She's really working with me, and I couldn't be more grateful to her for helping me not lose all of the hard work I've put in for the first 4 weeks of this 6-week class. I've also dropped out of the next class. *heart breaks a little more*

So, after 3-4 days of working on this entry, I get to the point of this whole rambling mess. I've always been big on getting help for mental health issues. I've always said there is no shame in it and I've been very open about my past struggles with anxiety and depression. Well, that's easy. That's in my past; something I've overcome. But here I am... that same familiar empty feeling of hopelessness starting to creep in. I'm a mother who cannot take care of her children, a wife who cannot be half of the marriage. I am a (TEMPORARY) college dropout. Again. I am cooped up and relying on the kindness and generosity of others. (And boy, is there a lot of it!!! I am very aware of how loved and blessed I am.)

I am struggling with a serious setback in my independence. I depend on others to make sure that I have food available that I can reach and prepare. I count on others to take care of Nora and my kids. I count on Jenny to make sure I can bathe and even that my commode is emptied because I can't get into a bathroom. Everyone is happy and willing to help, and I'm dying a little inside every time I can't do it alone. Progress is slow, and people are concerned and want to help. And everyday, I'm a little more discouraged and broken because I can't just stand up, drive to the store and get what I need. There are many things I can do for myself, and I am so grateful that although I'm staying with Jenny and Jerry, that they don't just do everything for me. They don't get things for me just because it would be faster or easier. They leave me alone and let me have time to myself or to visit with other people who come by, even though they are their friends too. I am grateful beyond words to be so loved that Jenny takes me in with no question and treats this like a positive because we get time together rather than a burden.

But gratitude doesn't negate the depression that is creeping in. So, I'm practicing what I preach, and I'm being real and honest. Right now, I'm starting to struggle with depression again. It's been well managed for quite a few years now, but I feel that hopelessness settling in. I'm tired of fighting doctors for answers. I'm exhausted by the constant battle with insurance companies for getting coverage (no, really, deny my hospital stay, why not... seems legit...) and getting the help I need to be safe. I'm sick of not being a functional wife, mom, friend, PERSON. I'm tired of the pain, the grogginess, and not being with it. My anxiety is likely only under control because I'm doped up on drugs, but as I'm able to ween off of those, that is going to spiral out of control too. I am a control freak, and right now, I have very little. That triggers panic attacks that are sometimes unmanageable.

I've been here. In the past I let it get so bad that I hated being with people because I couldn't control the panic. I've been in a depression so low that I couldn't leave the house or be a good mother. At first, I was too ashamed to get help. And then I got so hopeless that I just didn't think anything could fix it. I know that's where I'm going.

That's why I'm writing this. I'm starting to sink to dark places. I'm starting to hurt and feel hollow in a way that scares me. Friday, I see my Primary Care Physician. I don't know if I'm ready for a med change yet or not but I'm open to discussing it. I'm being honest about it, and I'm facing this out loud; in the open. Tonight I'm struggling, and others are too. I don't expect anyone else to plaster it on Facebook or on a blog. Just know that if you are struggling tonight too, there's no shame in it. Help is available, and you can seek it privately if you choose to. You have nothing to lose by trying. Call a doctor, a therapist, a pastor or priest, a doula, a hotline number, a friend you trust... no matter your political, medical, moral, or religious views, there are methods out there that fit you. What works for me may not work for you. That's ok.

And a preemptive response to my friends and family, I'm in a rough place. I'm actively working on both my physical and mental health. Love is good. Smothering is bad. I do not have feelings of hurting myself or others. Being public about this is important because I feel strongly about speaking out about the stigma society places on seeking treatment, however, being public while I am dealing with it opens me up to more coddling, ideas on how to fix me, offers of help, and even less independence. Those are not helpful.

Now, another day of working on this... what is that now... 5? I don't even know. And I'm too tired and loopy to proofread this to check. I think it's really long. Sorry. Drugs... I babble. I hope it makes sense. Hopefully, the importance of this post comes across anyway because it's important. Better days are coming... that's what they say. I'm just going to have to trust that they are right because I've struggled through this before and seen that it's true. Hopefully, it will be again.

Tuesday, June 13, 2017

April 15th- Daily Autism Post- Vacation Blip of a Post

I am tired and Dex is rocking this trip! Sometimes he blesses us with flexibility and the ability to step outside of routine with few struggles! So that's the post because it's all the energy I've got today.
The bad... I'm letting him eat whatever junk he wants and letting him video game it up.
The good... It's Easter vacation in SD so I don't care. He's out of routine and happy. I'm calling this a major win.

April 14th- Daily Autism Post- Siblings

Yes, there were two this day... making up for the missed one? 

The other day, I thought it would be interesting to make a video with Regan and let her explain some of the struggles of having a sibling with Asperger's. Obviously, I never posted the video. That's because it was boring. Regan just honestly didn't feel that there were any struggles. The best she could come up with was that she was more careful about packing his lunch to make sure that his lunch would work for him.
I can think of dozens of ways that their lives are impacted by Dexter's needs, but if they didn't bother her, I don't feel the need to bring them up.
However, last night was a perfect example of how Regan's life is impacted, and yet, is completely normal. Jabe and Dex were arguing. (Normal brother stuff.) Dex got upset, so Regan got him and had him go to her room, gave him a blanket, turned on Foo Fighters (one of his favorites), and told him to focus on calming down. While he laid there on her bed listening to music, she continued to go about her business, packing for our trip and putting away her laundry.
Is this normal for an 11-year-old? Probably not. Dealing with fights between other siblings is one thing, but helping your brother prevent a full-on meltdown, and knowing how to do it is another. I'm aware that it's not something most kids do. But this has always been her life. She doesn't look at things like this as dealing with autism. She looks at it as helping Dexter in the same way she'd help me make dinner or Jabe build a Lego city. She doesn't look at him and see autism. She just sees her brother. Sometimes they have fun. Sometimes they struggle. Just like her other brothers. This is why she couldn't think of how her life is impacted my autism. It's not. It's impacted by Dexter. She loves the good and helps fix the bad, just like she would with anyone else. May the rest of the world strive to be like her. 
The bad... he has struggles like the rest of us.
The good... he doesn't face them alone. He's part of a family that loves him and his siblings (although they make him crazy sometimes) have his back.

April 14th- Daily Autism Post- Aspie Honesty

Dexter- Mom, I love you so much. Hug me and pet Tori.
Me- I love you too, Dexie. SO much. I'm lucky that you are mine.
Dexter- I am too. I love Dad more though.
This conversation from earlier today isn't the first time he's told me this. I think most parents would be hurt to have a child say something like this to them, but if you really know and understand Dexter, there is nothing hurtful here.
First, Dex has a very limited number of people he likes to snuggle with and probably even fewer that he volunteers the words "I love you" to without being told that first. When he says it to me, when he asks for affection, my heart sings. I know that he means it. He DOES love me.
Second, for him, if he's saying something that is true, he sees nothing wrong with the statement. He's told me that Dad is taller, but I am wider. He's called an elderly woman "really old." He told someone who was yelling at their child that they were disrespectful. In his mind, we tell the truth. When you are stating a fact, it's true. Sometimes it isn't until after he says it that he realize that even though it's true, it may hurt someone's feelings.
Lastly, this doesn't hurt my feelings. It's not about ranking. (Let's be honest, I think Tori ranks above me too.) What it IS about is Dexter having someone that he loves deeply and he knows understands him. Not someone who is just compassionate, but really REALLY understands him. He has that in his Dad. He knows that I will be there for every meltdown, every frustrating day, every homework assignment he doesn't think he can do. But he can look at Shawn and see someone who is different like him. It doesn't make me sad that he says he loves Shawn more. Not even a little. Every time he says it, my heart swells with pride. My baby has an AMAZING father. How could I be sad about that!?
The bad... Sometimes Dex comes off as rude and insulting.
The good... It's never intentional, and he's quick to apologize when he finds he's hurt someone's feelings. I'm amazed at his willingness to apologize when he knows he did something wrong. (Now, when he feels his words or actions were warranted, getting an apology is like squeezing blood from a rock, and when you do get it, it's clearly not heartfelt.) 

April 13th- Daily Autism Post- Just a Thought

No, you aren't crazy. There's no 12th day post. Guess I missed that. Welcome to the reality of parenthood. I'm not perfect. ;) 

Too tired for a long autism post today so tonight you just get a short thought. I'm enjoying these posts but it makes me think about it in a more deliberate way. Aspergers doesn't consume my life. It's certainly an important part of it but it's just day to day life for us. Dex and Shawn aren't defined by it and the unique way their brains work is just our normal. I hope to share what autism is like in order to normalize it because, even with its struggles, our family has a happy kind of normal. Our normal probably just looks a little different. 💙

April 11th- Daily Autism Post- The Dreaded IEP....

Having a child with autism brings about a whole new vocabulary... Asperger's, neurotypical, 504s, ASD, stimming, SPD... and the dreaded one... IEP. An IEP is an Individualized Education Plan. It's a plan that helps a child with special needs have the accommodations they need available to them so they can be successful in the classroom. Many autism parents go into IEP's prepared for battle.
I had Dexter's today. (And I was most certainly on time because I have my stuff together and definitely had it on my calendar. *head hung in shame*) I'm one of the lucky ones though. I don't go to these meetings every year to beg, plead, scream, and fight for what Dexter needs. I sit down with a team. His team. My team. I'm surrounded by teachers and administrators who already fight this battle every day.
They come up with solutions I wouldn't even think to ask for. He has headphones, sensory swings, sound machines, alternatives for work rooms, places to be to skip school-wide activities that are too loud (like lunch, assemblies, and walking club), paras who can help him one on one, technology options. He has counselors, school psychologists, special education specialists. Last year a door was retrofitted with a window so he could have a room he could be in alone but still allowed him to be monitored for safety. He gets the extra reading help he needs, speech therapy, incentives to complete tasks he hates doing.
I feel like my job is easy. I go in and sign off on all of the options that they are already making available regardless of whether or not they've been added to the actual documentation. His needs aren't met because I have documents that say they are required to. They are met because our team does everything in their power to make it happen.
I know many parents don't have this experience. I don't take that for granted, and I'm very thankful for the education and experiences Dex has because of where we are.
I also know that teachers' time is valuable. They put in LONG days. I was raised by a teacher, and I know that after school, when they are there, they are losing time with their own families. So when you are flighty and don't write down the meeting and show up 30 minutes late, they are losing unnecessary time with their families. So, Laurie CollinsJessica RayneCarmen Kress, please tag the others who were there or pass along my sincere apologies to them as well. Know that you are so appreciated and that everything you do for Dexter is what gives him the skills and confidence to be successful and happy. Sorry doesn't give you the time back but ask I mentioned in a previous post, when we mess up, we right our wrongs and make apologies. 
So... Bad... IEP meetings can suck. Bad.
Good... Mine don't because I have awesome people. Ours are generally entertaining and almost enjoyable!

April 10th- Daily Autism Post- Personal Space Issues

Dexter is very aware of his personal space. He doesn't like being touched at all by strangers, so we've had to work on helping his comfort level with things like doctors and dentists. Now that he's older and more capable of understanding things, it's usually easier. He's also learned that if he tells them that he doesn't like to be touched and would like to have things explained before you touch him he feels more in control. Our doctors and dentist are fantastic with him.
Other things we just avoid. I do haircuts at home because it's a sensory struggle because it itches, clippers are loud, and it vibrates on his head. At least if I do it, we aren't adding a stranger to the mix.
He also isn't always a fan of being touched in general. He doesn't like it when people casually touch him... patting his back, putting a hand on his shoulder, ruffling his hair. It's just unnecessary in his mind, and it feels like a violation of his space. Every night when I tuck the kids in, I ask if he wants a hug and a kiss. Sometimes he says yes, but many nights I get a fist bump or a high five. He's not trying to tell me that he doesn't love me or that he's mad; he just doesn't feel like being touched.
Things are significantly better this year than last. Before we got his anxiety under control, he really couldn't handle being touched. People bumping into him or brushing against him in the hallway at school completely set him off.
To most people, something like a quick hug from a friend is nothing. Someone brushing your arm as they pass by is almost unnoticeable. For Dex, if he doesn't want to be hugged and you do it, he feels trapped and like his body is being violated. People knocking into him in crowded places is more than he can take.
We have a lot of easy solutions. Most obviously, if he doesn't want to be touched, don't touch him. No one, autistic or not, should have to hug someone if they don't want to. Your body, your choice. He also chooses to sit separate anytime he can. (At church, he sits in the row in front of us, so his siblings don't bump him or get in his space.) In Disney World, we rented a stroller and covered it with a blanket so he had personal space and didn't have to see the crowds. At school, he can sit away from other kids, and when he's too overwhelmed, he leaves the room, He also doesn't eat in the lunch room. Last year, his desk was in the hallway right outside the door.
Interestingly enough, he has significantly less regard for other people's personal space. If I'm doing something on my phone that interests him, he'll hover right over me or climb into my lap. His space bubble rule also has one other exception. Dogs. Tori and Alfred can always lay on him, lick his face, breath on him... He likes being crushed by Alfred and is happiest when Tori is on him. I am so thankful he has that connection.
The bad... it can be a struggle sometimes when we are in crowded places or when people don't understand how physical touch can be too much for him.
The good... there is nothing wrong with not wanting to be touched. His body, his choice. We've worked on him learning to be kind but direct about his wishes. He'll let you know if he doesn't want a hug and he'll tell doctors to let him know what they are doing, so he is aware and feels in control.
Bottom line... he should be treated no differently than anyone else in the world. If someone doesn't want to be touched, respect that. He just exercises that right more than some other people do.