Friday, August 11, 2017

Getting all Therapied... Physically and Mentally

They say that life is full of ups and downs. I'm currently alternating handfuls of Cheetos and sour gummy worms in the library of the school I should be attending but am not, so I guess I'm wallowing in a bit of a slump right now. (Whatever, I'm being honest. That probably cancels out half of the calories. Or something.)

After some back and forth with my student advisor, I've discovered that I can't just pick up where I left off. I have to wait until November when the next class in my cohort comes around again. That means that this little misstep will push off my graduation by about five months rather than the six to eight weeks I had anticipated. I realize that this isn't life or death, but mentally this is a setback that I wasn't prepared for. I look forward to being college educated. I look forward to being able to contribute financially to our family. I look forward to taking some of that burden off of Shawn.

Now, instead of seeing graduation inching closer and seeing the ability to take more vacations or pay off the mortgage faster, I see medical bills flooding my mailbox and graduation drifting further down the calendar. (Did you know that taking an ambulance for one mile will cost you $725? Because it will. I think next time I'll just roll the mile if I can't get up.) All of this just adds up to a frustrated, defeated feeling, grumpy, broken legged, sore, and whiny Jammie. Bring on the therapies. All the therapies.

As I mentioned previously, I've started seeing a counselor. My life revolves around being a wife, mother, friend, student, etc... Break both lower extremities, and life revolves around what time you can take your next pain meds, how long you can put off the daunting task of going to the bathroom, and Physical Therapy. Without PT I would probably have had no reason at all to know what day of the week it was for the first four weeks I was out of the hospital. They all ran together. I could sleep all day and be awake at night. It wouldn't matter. When you don't contribute anything to your friends or family, when you don't work or go to school, when you don't get to be something good for someone... life is lonely. I lost my sense of purpose.

I know... healing takes time. I should let people help me. I'm loved. I help others. I know all of these things. But when all purpose in life is taken away and shelved for the foreseeable future, it's hard to remain positive. Being a parent is one of the hardest but most fulfilling things I've ever done with my life. Quitting that job (even for just a few months) sucks the happy out of my existence. I really got to feel how significant being a constant source of their stability and daily life is. Losing that hurts more than I anticipated.

For six weeks, I didn't go home. To qualify for the in-home PT I needed, I was required to be homebound. I missed out (and am still missing out) on things they need and on things I want to be doing. Parker's room is being moved to the basement. I'm not helping. Jabe is taking Parker's old room. I'm not helping. Dexter went to the school early to meet his teacher and see his classroom without all of the craziness of back to school night and the other people. I didn't take him. (God bless you, Kim Lynam, for loving him and being there when I can't.) The summer of library visits, zoo trips, swimming, park visits, and prepping for the new year went on with out me. Even when you are fortunate enough to have the help for these things to continue for your kids, it's hard to not be the one doing it.

In therapy, we are working on my ability to give 100% because that's what I've always tried to do as a wife, mother, friend, and student. I'm still trying to give that same 100%, and I'm failing because I'm not physically capable of giving what I used to. So, the goal is to figure out what my new 100% is and give that. I'm gradaully getting better and being able to do more. I can now be in my home during the day. I can't stand or walk safely because Alfred would knock me down. I also know that I can't sit on the couches because Alfred would sit on me. But if I'm in the wheelchair, I'm safe. That means I can do some house work... laundry comes downstairs to me, I can vacuum, organize and direct the kids. And I get to be with them more. I can do activities at the table. I'm finding my new 100%. I'm still broken hearted over the things I miss out on, but I'm trying to turn it around and look at the things I can do and the progress I am making. I'm trying to be cooperative with my therapist! I want a sticker for that.

And I am making progress. I was finally discharged from in-home PT. My therapist was INCREDIBLE!!!! But being forced to be homebound except for appointments with my doctors was destroying my mental health. It's isolating to never leave the house. The world goes on around you, and you just watch it pass. Or you don't because at some point it just doesn't matter all that much. Now, I'm doing outpatient PT. First, this allows me to leave the house. And I do. Every chance I get! Friends take me out, and Shawn is great about picking me up to come home and spend days there. I'm like a dog with its head out the window in the breeze... just happy to be out and seeing the world!

Now that I'm back to PT, I feel like I'm actively working towards making progress towards getting back to my normal activities. PT hurts. I've now been off of narcotics for a week, and I'm really hoping to keep it that way, but I'm sore today after working yesterday. My legs get shaky, and I feel really unsteady. I feel kind of like I'm on a boat when I stand. We're working on strengthening my hips and legs, my balance, adding some resistance training to my feet and ankles, and range of motion. I've been told four to eight weeks for driving. I'm doing everything in my power to make it four. I'm ready to have my life back.

So, that's where I am now. I'm getting out. I'm working hard in PT. I'm exhausted and sore, but I'm off (or mostly off, we will see how the next few PT sessions go) of the stronger painkillers. I'm trying to project a positivity that I don't quite feel, and I'm trying to not let my graduation setback get me down. But I'm still frustrated and angry. They say you just need to keep putting one foot in front of the other. Well... it's harder to do that when you manage to break them both. Brace, boot, wrap, compression socks, and walker at the ready... I'm trudging along.


Sunday, July 30, 2017

Step and pivot... Wait... This sounds like dance moves?

Step and pivot... Wait... This sounds like dance moves? Dancing has never been my strong suit (Right, Lisa Benecke?) but my walking currently isn't even much worse! I'm overdue for another blog post, so I thought I'd put together another update before I go to bed.

I want to be full of sunshine and rainbows and tell you with excitement how great I'm doing. PT on Friday was rough. The conversation when she got here went something like this...

PT- Today we will be working on walking again.
Me- Walking to the bathroom?
PT- Ehhh... just walking further.
Me- Walking to the bathroom? (Seriously, people. You have no idea how badly I want the ability to use the bathroom. It's a huge step towards gaining independence and dignity.)
PT- Ok. Here's the deal. If you can go from sitting to the wheelchair, stand up, walk six feet, pivot to turn around 180 degrees, and sit down in a controlled manner... and do it twice, we will attempt the bathroom. Because that is what you will have to do to use the bathroom here.

Hell. Yeah. Let's do this. She will tell you that while I abhor my PT sessions and there is sometimes a flurry of bad words, I will work. Hard. I'm cooperative, and I'll push myself. I don't need convincing to working to get myself out of this situation. I'm all in.

Let me tell you... Walking is hard. It's not so much walking either. I think that puts the wrong idea in your head. I can put no weight on my right foot. Walking is a sort of scooch/hop on the left foot. It's incredibly painful (but getting easier and I can now get through it without tears) and the "steps" are slow and small.

I started in my wheelchair. I am now able to stand up with very minimal assistance from my therapist with my walker. It's tough because there's a point in the standing process that puts my weight on it just right and it really hurts but as soon as I can get past that it's more manageable. I have to be reminded to breathe because I tend to hold my breath a lot. (Who does that? How do you forget to breathe?!) I got up, moved the six feet, again with pretty minimal assistance from my therapist and then stopped to pivot.

That, my friends, is a whole new ballgame. Turning stretches muscles and ligaments and changes the parts of your foot and ankle that bare the pressure. I almost immediately knew that this wasn't working, but I was determined to finish what I started. My therapist is incredible. She pushes me when I need it, she pulls me back when I'm stubborn and pushing to do things that aren't safe or trying to do too much, and she gives me time to breathe for a minute when I need it so I can do something again. At this point, rather than making me stop and moving my chair to behind me, she talked me through how to turn more effectively. It's not easy. It hurts. But I finished that turn and sat down.

I wanted so badly to tell her that I could do it again because this is MY goal. I want this. But I know that the reality is, at this point, I can't do this. I couldn't do this a second time. I need more practice just working on pivoting safely, so I'm lifting more with my upper body and getting my foot off the ground so I'm not turning my ankle so sharply. I can't drag it at all when I turn. It's not a pain that should be worked through. It's a pain that is telling me that I'm damaging things by doing it incorrectly.

So... not today. No sunshine and rainbows. Until I see my therapist again on Tuesday, I'm working on safe pivots. I'm trying not to feel defeated. I'm trying to look at my progress. (I pushed hard after that and managed to walk with my walker and with minimal assistance for 18 feet.) I'm trying not to think about missing all of the activities my kids are doing with my Dad on the Staycation we've been planning since Christmas. I'm ignoring the hospital and insurance issues with the help of the ever fantastic Ernesto Medina. I'm trying not to be nervous about the upcoming appointment with the ortho doctor who is the one who decides on my weight bearing status on the left foot... getting clearance to use that some will help a lot with PT. My friend and guide through this whole mess, the incredible Dr. Chris Bingcang is coming along for this appointment to help me ask the questions on the medical side of this that I may not think of or understand. I'm trying not to think about the classes that have started that I should be in... or the jobs as a wife, mom, and friend that I no longer do.

I'm talking to my therapist about how I need to adjust my expectations in life in all of these areas for now. I need to redefine those roles for a while so I can still feel purpose in my life. It's hard to feel purpose though in part because I am so tired. Healing and PT suck a lot of energy out of me. I'm not off of pain meds but I've drastically cut back, and that is an important improvement. I sleep more than I want to because of complete exhaustion. My therapist really wants me to spend this week thinking about how I can use this time to learn to rest and recover so when I am healed, I am more capable of forgiving myself for the things I cannot to. I can get through this, and more than that, I can be better off for it. I am supposed to set new standards for what it means to give 100% in the areas of my life that give me purpose. Giving my kids 100% now will look different than what 100% was two months ago and if I can't redefine that I will fail and my depression will continue to spiral downward. I'm working on it. I left my therapy session with him feeling like I had things to consider rather than wanting to silently flip him off as he turned the corner. That's a pretty big win for therapists and me.

I want to tell you that I am happy and that I'm in a better place mentally. I don't really think that would be completely honest though. I can say that I am determined. That I'm putting all of my efforts into healing my body and my mind. I'm cooperating with PT when it's hard. I'm cooperating with my therapist even though I don't want to go. Know that if you aren't getting responses to calls and messages, that I'm ok. I'm just tired and overwhelmed sometimes. Simple things feel like a lot of effort sometimes, and I'm just trying to take the therapist's suggestion of learning to heal, recover and relax; even though a lot of times it kind of feels like an excuse or that I'm just lazy or rude. (Everything is an ordeal when one foot can't touch the floor at all, and the other one can only take pressure applied correctly. Seriously... try scooting from one side of the bed to the other or putting pants on. You'd never guess just how stupidly hard it is!)

This update is longer than I expected and I really should get to sleep while my pain meds are working and I'm comfortable. Thanks again to everyone for the help, support, love, messages, prayers, and happy thoughts. I am aware that there are few people who have the extensive support system that I have. I look forward to the day that I am healed and able to be on the other side of this kindness and can pay it forward when others need it. I am renewed in my ability to see the good in humanity. It is all around me. Know that it will not end with me and that I will proudly pass it on to the next person who needs a hand. Or a meal. Or a lawn mowed. Or a kid picked up from school. Or a visit... or... or... or... the list goes on.

Friday, July 21, 2017

Another Suicide and Realizing I Need to Put the Book of Fairytales Down.


Last week, I met with a counselor for the first time in years. I know that for many, therapists are very helpful. (Dexter responds wonderfully to his when we need extra help.) I think counselors, psychologists, psychiatrists, or any type of therapist can be a fantastic choice for getting help! I, however, don't feel comfortable talking to a stranger about my problems. I feel like they are paid to care, like they have an agenda already planned out, and like I'm just another person who fits into all of the things they've already seen, so they are already an expert on me. I also have distinct memories of talking to counselors when I was little, and my parents divorced. At that time it wasn't common for the father to have custody and I'll never forget being asked if I felt safe with my Dad or if he touched me in inappropriate places. That was pretty much the end of my desire to ever want to take that road again. 

Right now, though, I find myself in a position where my options are somewhat limited. I know that my feelings right now are moving towards depressive episodes because my life is lacking any purpose (other than healing.) I also know that anxiety will start to pick up because as I wean off of pain meds, I struggle with my lack of control and the feeling of being trapped both physically and emotionally. The struggle I face is that although these problems are only temporary, they are a longer term temporary than I think I can handle with no help. I'm almost a month in and I'm still looking at a few more weeks... months... I don't know... of not being able to walk, drive, or function like I'm used to. Yes. It will get better. I will recover. But depression doesn't care that later there is a light at the end of the tunnel and anxiety isn't willing to just hold off or be reasoned with. Meds all take time to work. Weeks. And finding the right meds and doses is hard. I've finally been in a balanced place with mine. Adjusting things could take even longer than healing. I do talk to friends. I'm open. I blog. But I need help. 

So, here I am. Giving this a shot after decades of vowing never to do this again. I found myself sitting in a tiny room at my doctor's office last week staring across the room at a man with a laptop who typed furiously as I answered his questions. Mental health history, physical history, family life, childhood, medications. Why am I here? What are my goals? The last two questions caught me off guard though. 

Why am I here? I don't know. Because I'm desperate? I really don't think you can pep talk me through this. I'm already aware that it's temporary. I know other people have it worse. I can't be talked into feeling better. If I could reason with myself, I'd have done it. What are my goals? That one felt like a more useful question. My goal is to safely and productively manage my mental health while my physical health recovers. I know both will get better, but I need to find ways to get through this, so I'm not coming out a mess on the other side. I don't want to drag myself through each day and not care about being awake or asleep. I don't want to be down so low that when I can physically walk that I don't have the emotional willpower to do it.

This is how serious I am about fighting the stigma. I'm getting help. I'm living it out loud. And I'm doing something that anyone who knows me well knows I've said I would never do. Mental health struggles are no joke. Today, another musician lost his battle with his demons. Chester Bennington is another example of how serious this struggle is; how critical it is that we cultivate a culture of support for mental health struggles. I can only be a small part of that by being open, but one drop in the bucket is still a drop. I'll take it.

Physically, I'm making progress. S.L.O.W.L.Y. I still can't stand unassisted, but I pulled myself up to the kitchen sink in PT the other day. It's harder than using my walker because it's more pulling than just pushing up, so more pressure is on my ankles and feet than on my arms. I'm proud of that accomplishment. But it's frustrating. I feel like since it's been a month, I should be doing better. I thought I'd be on crutches and out and about by now. PT is excited with how far I've come. We aren't on the same page, and the book I'm reading from is a fairytale. I'm working on getting a better grip on reality.

With PT, I give my therapist everything I have. I push until it hurts and I know my body has to stop... not just wants to. I do my exercises every single day without fail. I have people help me work on standing on my days off of PT so I can keep working. I don't quit when my therapist gives me the option to stop or do one more. I'll do one more. My slow progress won't be for lack of effort on my part. As much as I hate exercise and PT, I give it everything I have. That means my mental health deserves just as much of my effort. I hate this. I don't want to talk to him. And I've been honest with him about my apprehensions. He was respectful of that. (And he's kind of snarky. Like me. I appreciate that about him too.) I promise you, my kids, my family, friends and most importantly, myself that I will give this all of the effort I have. I don't want to, and this will be harder than PT. But I'm telling you all this to be accountable. 

All of this was a long introduction to what I'm currently working on. I'm working on doing things that I love and bring me joy. Right now, I just feel empty, and I don't take a lot of joy out of anything that I normally do. But I'm going to push those things. Writing makes me happy, and I'll be trying to motivate myself to do regular entries. I very much enjoy sitting and singing while my friend Chris plays guitar. We laugh. I suck. Badly. But it's calming because no one is around to judge and I enjoy the one on one time with a good friend. I am lucky he's willing to make time for that. I'm hoping that in the next week or two I'll be ready to go back and finish the last few weeks of my last class. I don't think I'll get the A I want but I want to push through and finish that class to the very best of the ability I have at this point in my life. I'm taking the time to clean out my computer, organize my thoughts, figure out how the school year will start, and take some time to actively be in silence. Doing nothing is not the same as taking the time to meditate and clear my head. 

And, I'm focusing on doing more. I've folded some laundry. I can use my grabber to help pick up things around the house. I'm wondering if I can't maneuver my wheelchair in a way that I can do some dishes in the kitchen. My therapist wants me to try to focus on the things I love and find the things I can do. I'm fighting the urge to roll my eyes at him and just crawl back into bed. But if I'm willing to give PT my all, I can do the same for my mental health too. 

Sorry for the lack of wit, cohesion, editing and even basic grammar checking. It's almost 2:00 and I have PT at 10:00 tomorrow morning. I'd better get to bed. Thank you, everyone, for the meals, support, help with the kids, rides to appointments, company, coffee, thoughts and prayers, cleaning, lawn mowing... and all of the other things people have done for my family. If nothing else, this experience has been the most prominent example of being the change and sharing the happy that I've ever witnessed. SO. MANY. People have come together. This is the world I want to live in. There is so much good in this world. Thank you for reminding me of that just when I need it most. 

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.

April 9th- Daily Autism Post- My Failures as a Wife and Mother

I think I’ve focused some on Dexter’s failures and struggles but not so much on mine. Part of me thought about not making a post like this because it’s not pretty for me. It’s nice when the world just looks at me as a dedicated, loving, competent mother. And wife for that matter.
But my goal in this project is making people aware of what life is like. I want an honest portrayal of our reality. Part of that honesty is that I fail. I don’t know anyone else who is married to an Aspie, so I have no one to compare notes with. I don’t know their struggles or failures. But I am very aware of my own.
Before understanding or even knowing what Asperger’s was, I just thought of me as outgoing and Shawn as introverted. I just needed to bring him out of his shell. So I forged ahead doing all of the things that you are "supposed to do” in life. I wanted a house, and three kids (it wasn’t supposed to be twins!!!), friends to go on couples dates with, etc… Shawn loves me and gave me everything I wanted. We have no regrets. We wouldn’t trade our kids for anything. But I spent years pushing Shawn to be “normal” and to break out of his introversion.
Now, years later, I’ve begun to understand how overwhelming this life we’ve created is. We have a big house, four kids, dogs, people coming and going, commitments and expectations that can’t be changed. I spent years of our younger life inadvertently telling Shawn that the way he feels, the way his brain works isn’t as preferable as mine. I’m the one who fits in better. The things I want are normal. Fit in, like me. You can learn to change to fit in.
This. This is why awareness is important. It’s not about making people fit into what society “should” be. Shawn was never broken. I was never a better kind of normal than he was. I don’t know how our life would be different if we’d known then what we know now. I wouldn’t wish to go back and not have kids because I love them. And Shawn lives for them. They are both is crazy and his peace in life. But I do know I would have respected his introversion and his unique way of thinking more. I wouldn’t have gone full steam ahead just to be normal and have the life everyone dreams about feeling he’d thank me for it in the end.
So… The bad... Shawn has been dealt quite the hand. For him, it probably feels like he’s constantly holding half the deck. While he agreed to keep taking cards, I know he’s holding everything I handed him and doing so because he loves me and has always been committed to my happiness.
The good…1. Although he doesn’t always feel like it, this man juggles parenting like a master. Kids first. Asperger’s second. He will not let them suffer because he struggles. 2. I am a better parent for Dexter because of what I’ve learned through my relationship with Shawn. I won’t make those mistakes again. 3. I’ve learned how to be a better wife. I’ve learned how not to push, how to see things from his side, how to be proactive about meeting his needs and protecting his sanity. I’ve found that I don’t want him always to have to ask for help or understanding, I want to give it to him freely. Doing that has made it easier for him to ask when he does want something. 4. I love him and value him more now than the day we got married because I get to see and understand a more authentic version of himself. I don’t love him for what he could be. Just who he is. 5. And most importantly, he has lovingly, but most definitely, humbled me. I’m pushy and outgoing, but that gives me no right to steer our marriage. My personality is not better or more desirable than his. He is likely nicer, smarter, calmer, and more open-minded than I am. He is also forgiving, doesn’t place blame, and never has mentioned how things could have been different.
Autism awareness should be about letting these children grow up to be who they are in a way that validates their feelings and lets them understand themselves so they can be confident and educated in their choices. For now, Dex says he doesn’t want to get married. Whether or not it stays that way, I have no idea. But I will raise him to know that if that’s what he wants, that is completely acceptable. 

April 8th- Daily Autism Post- The Post Where I called My Kid an Assol

Ok, I'm going to be real for a minute... but maybe not politically correct so if you don't want to be offended, this post may not be for you.
There is a fine line between Asperger's and asshole. Dex can't help having Asperger's. However, he can help being an asshole. When you mess up, you apologize. I don't care if you are on the spectrum or not. You right your wrongs. This video is from last year. Dex had refused to do homework. When that happens, I want it to come home. It. Will. Get. Done. He made an apology, and we came up with a solution (that we still use!) to help prevent it from happening again. For more serious incidents, I will take him in to make apologies in person. We've clean messes from meltdowns, written apologies, taped ripped papers... This is so important. So often I'd rather shrink away and pretend something didn't happen and let it blow over, but I want him to know that's not an option. We make things right. We own up to our mistakes and are responsible for our actions. This also helps teach him why it's important for him to work to control his brain and his emotions.
The bad. He can be a beast. When I pick a battle like this, I will win because he has to be a decent human being but it may take a long time. It's frustrating and can be embarrassing. He's stubborn.
The good. He understands that his brain doesn't always cooperate, but he's also learned that his actions are his... the good and the bad. He's made huge progress in preventing meltdowns and calming down quickly when they do happen. He also has gotten good at apologizing when he's done something he knows is wrong. We've gotten here with persistence, consistency and amazing teachers and administrators who work with me as a team rather than against me. And they forgive and love him. They make Dexter feel loved even at his worst. That is key. He's not defined by his worst moments. So much thanks to Megan Dolphens Pick for weathering so much of his worst and loving him when he felt unlovable. Last year could have destroyed my son, but you didn't give up even when you probably wanted to. He came out of it stronger and more capable. I'll never be able to thank you for that. ❤️




April 7th- Daily Autism Post- His World in Pictures

Dexie has a different way of looking at things. He stops and notices things I'd never even give a passing thought to and he often asks me to stop and take pictures of things. Sometimes it's things he's done but often it's just something random. I'll caption these pictures as to why he asked me to take pictures of them. Some of them should make you chuckle. It will take me a few minutes to caption all of them.
The bad... there is none really. My phone has lots of random pics?
The good... I get to see what he thinks and how his mind is working at the moment.

Dexie has a different way of looking at things. He stops and notices things I'd never even give a passing thought to and he often asks me to stop and take pictures of things. Sometimes it's things he's done but often it's just something random. I'll caption these pictures as to why he asked me to take pictures of them. Some of them should make you chuckle. It will take me a few minutes to caption all of them.
The bad... there is none really. My phone has lots of random pics?
The good... I get to see what he thinks and how his mind is working at the moment.

I'm not sure if he made it or if Jabe did but it was on the counter and he wanted it documented.



Dex had cardboard cubes that could be folded into Minecraft blocks. He wrapped some of them with paper and made dice. He was proud of it and wanted a picture of his work.

Dexter insisted that Tori didn't like the noise so he put a pair of his noise canceling earmuffs on her. She left them on and that was proof to him that she like it and was like him.

Look. Pages can be fanned out. Take a picture! 

Ok, dude. You got it. Picture taken!

We have a lot of pictures of Alfred pooping. It started as a joke Shawn started. Now it keeps happening and Dex (and Jabe) think it's funny. Boys. 

This is a ball that popped. Dex was fascinated by it. Picture needed.

This huge leaf completely captivated him! We ended up looking up records for largest, smallest, oldest, etc. trees and leaves. This is one of 4 pictures of it that he had me take.

I told Dex I missed a hair when I cut it so I just needed to snip it. I didn't want to get clippers out for that and just wanted to use scissors. He wasn't convinced it wouldn't hurt with scissors. He asked to see what I was cutting first. In the end, he trusted me to not cut his ear off but he asked me to keep the picture for later... whatever that means.

Mind. Blown. by wrinkled fingers after a long bath. Gotta document that!

Halloween pumpkin carving didn't go as planned. For him, it was a sensory project. He liked the feeling of cutting the pumpkin. (Yes, creepyish... I know.) When he was done, he wanted a picture taken like everyone else. I'm sure making will look at this and thinks is weird or gross but I look at it and see a time Dex was willing to participate in a messy project and was able to find some enjoyment it. (Even if it wasn't exactly what I'd planned.)



"Take a picture of this bounty!" I love how he chooses words I'd never think to use. 

--He gets a small bag of M&M's at school if he has a good day. He helps me bag them. 


He was insistent that Jennifer Morrissette needed to see this dog. Not sure why but she needed it. 

April 6th- Daily Autism Post- Inverview with Dex about Food Struggles


Rather than doing a written post today, I tried something different and did a video post with Dex. He kind of rambled and wouldn't stay on track so it's longer than I'd like but he's amusing, so here you go! This is a conversation with Dex on the struggles of foods. (Also, I really hate what I look and sound like in videos.)



April 5th- Daily Autism Post- Obsessive Nature and Relationship with Dad

Aspies tend to be very focused on and very good at particular things. In my experience, tech and video games are a pretty common one. Dexter and Shawn definitely fall into this category. Tonight was a very typical night. One way that Shawn and Dex bond is Dex getting to watch Dad play. He learns a lot, they get to be together, and this is how Dex decompresses. This video makes me smile for two reasons. First, this is Dex just being Dex. He’s talking through everything. He’s Shawn’s commentator. (And bossy!) And second, this is Shawn being Shawn. This is overwhelming. Dex is loud, bossy, touching his screen, hovering in his space, and relentless in his questions. This is a one minute video but this went on for easily 30-45 minutes. However, Shawn always puts the needs of the kids before his own. Most parents do that, I think. But for him, it can be hard to handle that much stimulation. Shawn is what makes me see that Dex can have a normal life. (Ok… I wouldn’t call our family normal. That might be pushing it.) Shawn finds ways to manage his struggles and be an amazing Dad.
All of our kids adore Shawn, but especially Dexter. He knows that Dad relates to him and understands how he feels. I look at this video and see two people who love and understand each other, doing normal father and son stuff, and just being guys. Same thing as everyone else, just done in a slightly different way. That’s Asperger’s.
So…
The bad… Dexie will dominate a conversation. (Or completely ignore that someone is trying to engage in one with him.) He will remain fixated on the same subject, tell you things you already know, and continue talking to you even if you aren’t interested because sometimes he doesn’t realize you aren’t interested and sometimes, he just doesn’t care that you aren’t.
The good… He will learn EVERYTHING about a subject. His vocabulary isn’t typical of an 8 year old in the subjects he fixates on. He’ll talk about things that I have to look up or ask Shawn about because I don’t know where he gets things like CPUs, pyromancers, mods, accurate statistics on the size of blue crabs, that lightening is hotter than the sun, or how high tsunami waves are. His desire to know things has gotten stronger as he’s gotten older. I love seeing where his brain takes him and where I get to wander with it. 💙



video

April 4th- Daily Autism Post- Depression, Anxiety, and Medication

Asperger's info for the day... I often get asked if there are medications to help with Dexter's Asperger's. The simple answer is no. However, other things are commonly associated with Asperger's that can be helped with medication. Dex is also diagnosed with ADHD and general anxiety disorder. (He definitely doesn't have the hyperactivity aspect like Jabe does, though.) After two years of trying to manage things with coping mechanisms, OT, and a therapist, 2nd grade culminated in about a three-month stretch of meltdowns, outbursts, panic attacks and depressive episodes that made it impossible for Dex to function on a day to day basis, let alone be in a classroom to learn. At this point, we sought out medication options to manage his anxiety and inability to focus in order to see if we could manage his depression and outbursts.
These months were the lowest of the low. My 7-year-old told me and teachers that he didn't want to be alive anymore. For my baby to know such despair was heartbreaking. During this time, I felt trapped, physically and emotionally. I couldn't help him or make it better. I couldn't be more than 10 minutes from the school because he needed me to bring Tori in all the time to calm him. Meds made all the difference. His general anxiety level came down dramatically. This allows him to utilize coping mechanisms. He's able to verbalize his frustrations, ask for what he needs, remove himself from situations that he can't handle, or tell a teacher he is upset and ask for solutions if he doesn't know any. This, combined with medication for ADHD allows him to have the focus to not give up immediately when his school work is hard because he can push through.
So, the bad... There are periods of serious lows. Depression, anxiety, lack of focus, trial and error in finding the right meds and the right doses, not being understood... these are devastating things to deal with, especially as a child.
The good... It's not just about struggling through the lows and hoping there is good on the other side. It's finding the solutions. Medications, coping mechanisms, out of the box learning techniques, teaching him to surround himself with people who don't expect him to change who he is, learning to love his brain and finding the advantages of how his brain works... these things empower him. He is more capable of turning things around for himself. That has given him a feeling of control over his life. He will tell you when he's done somewhere and needs to go home. He can tell his teachers if he can't handle being in the classroom because it's too loud or if he's mad. He is more proactive about solving his problems than many adults I know. I know there are more struggles coming. That's life. But I'm raising a child who wants to take control of his own life. Not an Aspie who wants to do that. In this respect, he's just an empowered, kick-ass human.

April 3rd- Daily Autism Post- Learning Differently

This morning at breakfast, I had to take a book away from Dex because he was distracted by reading and needed to finish up. That's a problem that every parent is secretly happy about! With Dex, though, I am overjoyed. Learning to read was hard and very frustrating for him because he works so differently. It took me a while to understand the problem.
One day, we were trying to sound out words. M O M... he sounded it out as Jammie. I finally got it. For him, groups of letters were processed as pictures. M O M could be Jammie, Mom, Mama... H O U S E could be house, home, building. He memorized what words looked like quickly but sounding things out was practically impossible. If I gave you a series of pictures and asked you to sound them out to form a word, you'd think I'm crazy and that I was trying to trick you. That's what it was for Dex. Once we figured that out, I talked to his psychologist for suggestions, and he gave us pages of nonsensical words to sound out that wouldn't put a picture of something in his mind. We also focused on learning how sounds come together so he could learn how to basically sound out the pictures. Reading can still be frustrating because we have so many exceptions to the rules, but he gets it now. He's even learning to enjoy it because he likes to learn and know everything. So....
The bad- Seeing the world in a different way can make learning hard. Sometimes people don't even begin to understand what he sees or why he's confused. Me included. That can make conventional classrooms difficult.
The good- He's incredibly smart and capable of learning; we just have to be flexible in how he is taught.
The BEST- Dexter has had some PHENOMENAL educators who don't force him to try to learn like everyone else does. He's pushed to learn, to be his best, and to work hard but in ways that make sense to him. And he's had administrators who believe in him and go above and beyond to give him what he needs to be successful. Conventional classrooms can be hard, but because of his team of people, he's succeeding!

April 2nd- Daily Autism Post- Motivating Differently



Autism makes Dexter's brain work differently and so, I adjust my expectations accordingly. That is very evident today. Because I'm in school, my house is a bit neglected, and I count on Shawn and the kids to do a lot of the cleaning and maintenance. They do a great job, but it needs a good scrub down and a family cleaning day. (Shawn is feeling a little overwhelmed by the to-do list. Time to set homework aside and help catch up!) 
I expect all of the kids to help. Even Dex. He hates cleaning. I get that. It's not fun. But autism doesn't get you out of responsibilities. I just make it work for him. Dex needs to see progress, not look at the big picture, and have a list. He's great at picking up, loading and unloading the dishwasher, running things around the house, wiping things, organizing things, and taking care of the dogs. 
To make the day manageable, I do a couple of things. First, I add things to his list three tasks at a time. A huge list is overwhelming. I make sure they are small jobs. I'd never say, "clean your room." That's too much. He will clean his entire room, bit by bit. Same work, given differently. I also make sure there are jobs in there that he enjoys like giving the dogs treats and we build in breaks. When he's starting to get annoyed, we take a 30-minute break. He's about to take one after an hour of work. I'm happy with that. And lastly, headphones. Cleaning is loud. He hates the noise of things moving, vacuuming and carpet cleaners.
 
So today... The bad- everyday tasks that I do with ease can be very frustrating for an Aspie. His brain tells him that this job is big, pointless, and that his time would be better spent studying dog books or playing video games. 
The good- rather than fighting his brain, I try to find ways to work with it. Make this jobs rewarding and productive. And manageable.
Also, I'm not above bribery. The kid works for M&M's. Then, there is a point. I haven't had to resort to that today. However, the day is young...