Is life fair? No, it isnt.

I was laying wide awake last night. WIDE awake, with a million things running through my head. None of them, were about money or finances, or my job or marriage, or what most people lie awake at night thinking about. I was thinking of funerals. Yeah, morbid indeed, but still, it was my brains topic of the night. Not too many years ago, a friend, who was 5 years older than me to boot, had mentioned to me that she hadnt lost one loved one, and has yet to experience the grief of such a loss. I stood there, a little miffed. Yes, good for her that she still has her family and friends intact, that no agony from losing someone has crossed her path. But, what the hell?! Why have I, why has my family experienced so much? So I did a quick run down of how many funerals I have attended. My final number is 22. I am 36 and I have been to 22 funerals.

The age range of these is staggering: 5 months all the way to early 90's. Some of these were born of natural causes, others were horrible tragedies. Quite a few of these funeral I relive more than I'd like to, as the images are burned in my brain. In light of all this, I see why I lie awake at night, scared of losing more people I love. I know that there is no sense in worrying about it, but tell that to my head. It's not so much the funerals of people who have lived a long life that  bother me, but its the loss of life of those whose lives were cut way, way too short. Unfortunately, the latter are the majority on my list. Only 4, yes 4, lived a full, full life, and it was just their time. The others were just cheated.

I've been the one bawling, leaving the funeral home to only be left with the aftermath of a long time healing. I've also been the one watching from the back, my heart aching for those who were directly affected. And even with my number, my loss, there are still others I know personally who have had unthinkable, unbearable loss. Losing a child, that is the worst hands down. No comparison. I cant even fathom the pain that accompanies such a loss. Losing a parent is awful, especially when it is unexpected and you had envisioned 40-50 more years with them. Every single one of the girls on my mom's side has experienced this. What a shitty thing to have in common with the ones you love. 4 men, their lives cut down in their early 40's. Not fair at all.

I think once you feel such pain, you are terrified of feeling it again. It takes a lot of time to heal, and then, time only dulls the pain. It never goes away. Its always there, like a shadow lurking in the night. Sometimes, coming out of the dark place that death can send you spiraling into is a huge job. You have to keep your head above water, all the while the rest of the world continues on their merry way. You get sympathetic glances, but then, if you take "too long" in your mourning process, people start whispering, "its time to move on..." "its time to snap out of it"...."its been long enough"....sometimes its a day's worth of willpower not to punch someone in the face for saying something of the sorts. Everyone has their own way of coping, of dealing with loss, and I would never judge the way someone handles it.

So, back to the subject of life being fair. I think we can all agree that its not. The best we can do is just accept the cards we are dealt, and try to manage our feelings the best we can. I try to be grateful for all the good that has come into my life, and I try to focus on how the bad can make me a stronger person, all the while, enjoying the family I love. I still have my memories, and at the end of the day, they can bring a smile to my face, and joy into my heart.

The heartache is inevitable.

Sigh. Another trip to the vet. Another furry friend lost. With every pet we have ever loved, there is always the sadness of knowing that one day you will have to make "that" decision. It is so heart wrenching, and it never gets easier. It is especially hard when you have to watch them get sicker and sicker, and you cant do anything about it. Josh and Lauren went with me, and Josh really stepped up, and helped me through it. I wished I could have waited for Seth to go with me, but I just couldnt wait, while she was struggling so much to breathe. It was quick, and she is in a better place now. I came home with a clay paw print, but we also carried out an empty carrier. That part is always hard.

Funny thing is, this was the day that we were originally supposed to leave on vacation for Florida. Seth started a new job, so we had to postpone it, but now I'm glad we did. Seth got home from the half ironman later than he thought he would, and I had a dying cat to take care of. It would have been a horrible, horrible start. I guess everything happens for a reason. I am glad it is summer break. At least I can sleep in tomorrow, because crying really wears you out.

The Reason I Jump

I'm reading a book, called "The Reason I Jump". I'm not going to go on and on about it, although I'd like to, so here is the excerpt from Amazon:

     You’ve never read a book like The Reason I Jump. Written by Naoki Higashida, a very smart, very self-aware, and very charming thirteen-year-old boy with autism, it is a one-of-a-kind memoir that demonstrates how an autistic mind thinks, feels, perceives, and responds in ways few of us can imagine. Parents and family members who never thought they could get inside the head of their autistic loved one at last have a way to break through to the curious, subtle, and complex life within.
     Using an alphabet grid to painstakingly construct words, sentences, and thoughts that he is unable to speak out loud, Naoki answers even the most delicate questions that people want to know. 

I just want to share a few of the questions and answers that I enjoyed reading. I think they speak for themselves.

Question 42: Why do you memorize train timetables and calendars?

Because it is fun! We get a real kick out of numbers, us people with autism. Numbers are fixed, unchanging things. The number 1 for example, is only ever, ever the number 1. That simplicity, that clearness, it's so comforting to us.

Whoever reads any given timetable or calendar, its always, always the same. You can easily understand all of them by following the same set of rules. And when it comes to our favorite things, we can memorize these as easily as if they were jumping straight into out heads. Invisible things, like human relationships and ambiguous expressions, however, these are difficult for us people with autism to get our heads around.

Perhaps you're thinking that its no major effort for me to write these sentences, but that wouldnt be true at all. Always lurking at the back of my mind is an anxiety about whether or not I'm perceiving thing as in the same way that people without autism do.  So, via TV, books and just tuning into people around me, I'm constantly learning about how ordinary people are supposed to feel in given situations. And whenever I learn something new, I write a short story dealing with the situation in question. This way, with luck, it wont slip my mind.

Question 36: Why do you like spinning?

Us people with autism often enjoy spinning ourselves around and around. We like spinning whatever object comes to hand for that matter. Can you understand what is so much fun about spinning?  Everyday scenery doesn't rotate, so things that do spin simply fascinate us. Just watching spinning things fills us with a sort of everlasting bliss - for the first time we sit watching them, they rotate with perfect regularity. Whatever object we spin, this is always true. Unchanging things are comforting, and there is something beautiful about that.

Question 23: What is the worst thing about having autism?

You never notice. Really, you have no idea quite how miserable we are. The people who are looking after us may say, "Minding these kids is really hard work you know!" but for us - who are always causing the problems and are useless at pretty much everything we try to do - you can't begin to imagine how miserable and sad we get.

Whenever we've done something wrong, we get told off or laughed at, without even being able to apologize, and we end up hating ourselves and despairing about our own lives, again and again and again. It's impossible not to wonder why we were born into this world as human beings at all.

But I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you're denying any value at all that our lives may have - and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships ok, but the though that our lives are the source of other people's unhappiness, that's plain unbearable.

Hopefully the last question will make you stop and think for a moment. I know I did.

New IEP, new goals...

So, just a brief reminder of what an IEP is.

IEP

An Individualized Education Program (IEP) is a written statement of the educational program designed to meet a child's individual needs. Every child who receives special education services must have an IEP.

Since Lauren is on the autism spectrum, has receptive/expressive language delays, and cognitive delays she will always have an IEP in place. They are individual goals written by her teacher, OT (occupational therapist), SLP (speech language pathologist), and APE teacher (adapted physical education). OTher children also have goals written by a PT (physical therapist), however, Lauren does not need physical therapy. They have to be measurable, and are broken down into benchmarks over the course of a year. 

Today was Lauren's IEP meeting for the 2014-2015 school year. I feel very grateful to work in an MD (multiple disabilities) classroom, as it has really helped me learn the school lingo and what to expect from our educators. Lauren's team always comes through with flying colors, and they really know what skills she needs to develop. For the past few years, our main goal is always to make progress on her expressive and receptive language. We are now putting a big focus on reading comprehension and "WH" questions. I have to admit, when I see terms like "severe cognitive delays", "significant discrepancy between receptive and expressive language abilities", "age equivalent scores", and "below age expectations", I get really bummed, and thats how I felt last night when I read the draft for her new IEP. 

Luckily, meeting with her team always makes me happy, as we discuss Lauren's wonderful and funny traits. They also ooh and ahhh over how much progress she is making. We have some great goals set in place for her, and we also have made a decision on an IPAD app to assist her with expanding her speech. We had used a Dynavox in the past, but we were highly disappointed with it's reliability. The cord and battery were constantly needing replaced, and at $150 bucks a pop for a $7500 Device (yes, $7500), it was crap. We are very excited with this new app, and luckily, it is half off tomorrow in celebration of Autism Awareness Day, so it will be $150.

All in all it was a productive day, and I left happy. One thing I have always wished though, is that people understood what time and effort are put into her IEP. I dont even think I've had anyone ask me what her specific goals are or how she is progressing with them, even though she has had an IEP in place for 6 years now. That might sound a little trite, but thats how I feel sometimes, like when people ask a broad, generalized question of "how is she doing?" I know that most people dont know what they should ask, and that it might be a very boring topic for them, but it's my life, and it will be my life forever. SHE will be my life forever, and I dont like to think that her progress doesnt deserve merit, even if its not "exciting". Ok, off my soap box, but parents who live with the IEP life know what I'm talking about.

Carolina Beach!

So last week Mom and I took the kids to Carolina beach. We left on Monday at 5am, and had a pretty uneventful trip down. Did not get lost once. We checked in around 5:30pm and I immediately walked down to the beach. I was on my way back, walking along the dry sand beyond the reach of the surf, and I found a large shark tooth. It was ultimately the best find of my trip. I slept well every night. We had a king size bed that I shared with mom, and I think there was a memory foam mattress top, because I was not one bit sore when I woke up. Tuesday started out rainy and cold, but I still beach combed, umbrella in hand. The sun did come out in the afternoon, and we were very happy about that. Wednesday was a nice cool, but windy, day. At that point I had been following the weather report for Thursday religiously, and I was on the fence about staying another day, because we were planning on leaving Thursday morning. I went to bed, planning to leave early and had some luggage already loaded into the car. However, when I woke up on Thursday and spent some time with my coffee and the sunrise, I knew I had to stay another day and enjoy the beautiful weather. I had hated the idea of spending Mom's 60th birthday in a car, so it was an easy choice. We spent a beautiful day on the beach. Lauren played in the surf and sand and had a ball. This trip was a huge turnaround for her. Typically, she enjoys vacation, but really prefers to stay in the hotel room. She got out a lot this time. Even when she was in the room, she sat and watched the ocean while she would eat at the table. Josh loved feeding the birds, he smiled more than I have seen in a while. We ended our day by having a birthday dinner at Outback Steakhouse. Everyone slept well that night...we were worn out! We ended up with some beautiful shells, and 34 fossilized sharks teeth. More than we've ever found before.

The drive home was not so fun. I did manage to get a walk in on the beach before we left, so that added a little sanity to my otherwise blah day. We got lost at one point. My shoulders were sore and I was tired. My nerves were shot and I was just a big grump. The GPS in my car didnt take us back the same way, so I had to really pay attention, as I wanted to take the App into Athens and take 33 to 270. I didnt get to bed until very late that night. I do have to say that the kids were saints on the way home. They were much more well behaved than I was.

I told Seth we would need to go back and get another corner room. If you get the corner, you have a beach view window in the bedroom and in the living room in addition to the full front beach view. If you are looking for a nice, comfy place with gorgeous views in Carolina Beach, go to Atlantic Towers, find a unit on the 6, 7, or 8th floor (they go higher, but that would be too high for me), and make it a corner room. We stayed in 701, and I think I would get the same one again. I was very surprised to see too, how close we were to Kure Beach. The welcome sign was just outside our hotel!

Spring Break!

Whew! The school week is over and Spring Break has begun! Even though I was surrounded by sickness all week, I have seemed to escape it. Just a lingering headache is still irritating me.

Started the day off by taking Mom to get her car from the mechanic. Then we headed off to the vet to get Fawn a refill on her medicine. Then off to the Catique. When we stopped in last week, there was a beautiful oil painting of a beach that immediately caught my eye. The store was closing in 20 minutes, and I couldnt decide if I wanted it. See, I am trying to veer away from buying things that I really dont need. I form of discipline I guess, plus I'm trying to cut down on clutter. I walked out without it, but I thought about it all week, and I knew I really wanted it. So today, I walked out with it, and also with a big smile. Seth hung it up over our bed, and it looks beautiful. We also left with a large, purple plastic easter egg that Lauren just had to have. 25 cents is worth her happiness, lol!

We have started to watch a miniseries on HBO called True Detectives. Holy crap, it is great. I highly recommend it.

Lauren starts her gymnastics classes tomorrow. She seems to be pretty excited. I know I am! This is a new experience for her, and I think it will be a great one. I feel so lucky to live in a city where there are so many opportunities for children with special needs. I know our property taxes are a lot higher than we would be elsewhere, but it is completely worth it. Westerville City Schools are wonderful, and that is one area that we feel is very important, no matter the cost, within reason of course.

We will be leaving on Monday for Carolina Beach, and I have not put anything together yet. I'm a little bummed that a cold front has decided to push through while we are there, but it wont keep me from beach combing and enjoying the view. We have an indoor pool where we are staying, so at least the kids will get to swim. The rest of my weekend will consist of laundry and packing, but Seth is being a huge help in getting everything in order before I leave.

Busy week

This week has been a whirlwind of activity. My main thoughts now are circling back to Lauren's toe problem. I wish the nail would just fall off. It seems like antibiotics just cant touch it. It is so frustrating to have a medical concern with a child who cant give you details about the pain. Guess we'll keep soaking it and call the Dr.

Lauren also received her progress notes and her grade card. I know she is a smart little girl, and there are amazing things in that brain of hers, but it is still hard to see all of the "1"'s on her grade card. Also, seeing any IEP goal that it marked "minimal progress" is a bit heartbreaking. I know the academics are just going to get harder with each grade level, and that it will be hard for her to keep up, but I have faith that she will continue to make great strides. Now, my definition of great strides and yours may differ. I feel guilty, sad, and happy all at the same time. Happy, because she is a joy, and she is healthy as a horse. Guilty, because she has made so much progress when some children who started out on her level have not. Sad, because her whole life will always be centered around her autism, and there's nothing I can do about that. I have started this blog because there are a lot of things I want to discuss and talk about, but do not necessarily want Facebook comments. I just want some understanding. Understanding as to why your child's brilliance and achievements make me happy, but at the same time it is a harsh reminder of goals Lauren greatly struggles with, or may never accomplish. Why sometimes I just want to be alone to think. Why I dont want to hear that "she'll be fine". Please dont dismiss her disability. She will shine, and I will make sure she has every opportunity to, but dont downplay my worry for her future. It is very real. Please understand that I love when people ask about her, how she is doing, and what she is up to. It may be mundane details for you, but it makes me see how loved she really is. Feel free to use the word AUTISM with me. I am a proud autism mom, and I have NO shame for her diagnosis. I dont pretend or put on blinders when it comes to her and her unique personality. 

Ok. enough for tonight. Thaks to those of you who took the time to read my rant.