Ohana Means Family...

We went to Disney when K was in kindergarten. It was...an awful trip. A lot went wrong, but the worst part was how much K didn't seem to enjoy being there. Even with the old disability pass (that is, the good one), it was rough. B, however, had a great time. I've often thought about taking a trip to Disney with just B. I always feel a twinge of guilt when I think about going without K, but I tell myself it's fine because she didn't like it, anyway. She'd be happier just staying at home with my husband, or another family member.

I've decided she'd have a much better time not going.

The thing is, K says she wants to go back. When we talk about Disney, she gets excited at the prospect of riding Small World 14,000 times (in a row.) However, spending thousands of dollars to ride Small World just seems ridiculous to me. Again, I tell myself she'd have a better time staying back, and that B deserves a vacation that isn't run by his sister.

I've never been able to fully convince myself of this, though, and while watching Lilo and Stitch tonight, I found the perfect way to explain it:

Ohana means family, and family means nobody gets left behind. 

Hearing that little catchphrase really drove it home. The trickle of guilt I usually feel when thinking about planning a vacation without K, turned into a waterfall of guilt.

I've decided that K would be better off not going, regardless of what she's told me. I've told myself the rest of us deserve a trip where we don't have to be ready to pull the ripcord at a moments notice.

It's shameful, I know.

We are a family. Period. Leaving out one member to make things "easier" just isn't OK. No matter how I try to rationalize it, and no matter how many other parents tell me they've done it without regret.

I know it's not uncommon in the autism community to do things as a family without the affected family member. To validate those decisions by saying it's better for the child (or a sibling.) If I'm honest with myself, I know K wouldn't feel good about being left at home. I'm sure even the most affected individual notices when everyone leaves without him/her. I want both my children to know they are always welcome.

Teaching my kids that we unconditionally support them will make B a better man, and K a more confident woman. Not hiding my child away shows the world that everyone has worth, and our kids really are different, not less. 

So, that's my new mantra. I'm sure Disney won't mind if I borrow it, right? (They'll totally mind, so, shhhh!)

Ohana means family, and family means nobody gets left behind. 

Quality time with my girl. 

Selfish

I have a confession. Lately, I've been feeling very selfish. Or maybe self-centered? All I know is that my #1 priority is my kids, and with a lot going on these days, I haven't been the best friend. Wife. Anything other than mother (and even that...)

More medical issues have come up with B, and in plain English, it sucks. Hard. In two weeks he will have an endoscopy to figure out if he has Celiac Disease. I won't go into detail about how we arrived here, because B deserves some level of privacy, but I can say he has markers in his blood showing he has a pretty high risk of developing Celiac at some point. That, along with other symptoms, have led his GI to tell me that even if the biopsy doesn't show Celiac, she will probably still want him to go gluten free.

Sigh.

B is already small. He barely eats, and what he does eat of course contains gluten. He doesn't have a big appetite, and so I fear taking away foods will leave us with other problems. Like starvation. I know I am over-reacting in a big way, because he probably won't starve to death, but when I say my kid is fine not eating, I mean it. I pretty much have to force feed him as it is, and that's with foods I know he likes. I've tried GF foods, and I can say with 100% certainty, if B has to go GF, we are screwed.

A lot of his issues with food are sensory based. His rigidness also makes it so that only certain brands and colors of food are acceptable. He eats no vegetables, and fruit is hit or miss, though thank goodness for year round watermelon. I don't even give a care if it's GMO. Anything to get him to eat.

I feel like we just went through a big change with the Epilepsy diagnosis, and we all just need a break. Smooth sailing for a while. But, I guess that isn't in the cards.

On the K front, things are going pretty well, but we are currently doing a med cleanse, and things could change. Basically, nothing is working for her anxiety anymore, and the meds are making her incredibly tired, along with making her gain a ton of weight. Just too much build up, I guess. So we are weaning her off, and getting a baseline. Her doctor is hopeful once we do this, her system will rev up a bit. She won't be exhausted all the time, and her weight will come under control.

K hasn't been off meds since kindergarten. Her anxiety is so bad, the side effects were "worth" it. Until now. I hope the transition goes smoothly, and I am hopeful her better school placement will help, but we don't really know what it will be like with K totally med free. All of this is adding to my own anxiety, and my own inability to look past my own kids to anything else.

On top of that, I am always worried that our perfect placement for K will be pulled out from under us. This is just a constant in my mind, and lately I've been worrying about it more. K is at a school where she is accepted and loved, and where she feels accepted and loved. She isn't forced to change who she is, or made to feel that everything she does is wrong. The focus is on her strengths, and what an awesome kid she is, not what an awesome kid should could become if she just did this, this, or this. I am always concerned that one misstep on my part with our school district (whatever that might be) could equal her placement being in jeopardy. The stuff nightmares are made of, my friends.

So, yeah, there's a lot going on, which means I haven't been pulling my weight as part of  my "village". At least I worry I'm not. I know there are people who expect certain things from me, but right now I can't get out of my own head. I want to, but I also believe you have to take care of your own family first and foremost, and sometimes you need to take a step back and do just that.

I am hopeful that things will settle down...soon-ish? That I can feel more comfortable about school issues, figure out all of B's medical stuff, and find a new rhythm. Not feel like I need to circle the wagons, and be unapologetically selfish. Although I guess I'm not unapologetically selfish, as I feel bad I can't be there for people as much as I'd like.

It's probably just part of being a parent. Not even a special needs parent, just a parent in general. Sometimes you have to take a timeout and focus on your own family, and their needs. And hope people understand.

I Shall Not Admit Defeat!

It's been a week. Or, really, a week and a half. Forget waiting for the other shoe to drop. I think sometime this week I looked up and 757 shoes came raining down.

But, as K's therapist's would say, that's glass half empty thinking, and that won't do.

It all began when I got into a fender bender the week before last. Apparently a red light doesn't mean the same thing to all people, and the woman behind me figured she'd use my car to stop, as opposed to her brakes. She looked at my broken bumper and told me to just get some glue. She didn't want to hear the person in the car with me had whiplash, and decided the best thing to do was jump into her vehicle and drive away. From an accident. Because, you know, why not?

One 911 call later, I filed a police report, called the husband, and had my poor car towed. Thankfully, I now have it back, so I can ring in 200,000 miles as planned. I mean, I am a little over 198,000. I was not happy thinking I might not get to reach the next milestone. It's the little things.

We are not a one car family, but someone, who shall remain nameless, thought he'd save a few bucks and not add rental car insurance to our policy. Let's just say, it's being added now. I always had this idea in my head that we could ditch a car, and just share one to save money. A lot of people do that. We...are not these people.

So, we're cruising along last week, and then Wednesday happened. Let me start by saying I am very thankful my husband decided to work from home that day. I am not thankful I put off taking a shower...

After getting K off to school, my husband, B, and I slept in. It was the one day that week I had nothing to do. We got up around 9:30 (yes, 9:30...I know some of you are murdering me in your heads), I made B breakfast, and while he ate I checked my email (and, OK, probably Facebook and Twitter) in the other room.

One second I hear B talking to our dog, and the next I hear gurgling. Gurgling that I thought was caused by him making a mess with his chocolate milk.

Don't I wish.

I walked into the kitchen and found him on the floor. Drooling. Convulsing. Not responsive in the least. I called (screamed) for my husband, and dialed 911 (two 911 calls in a week is not my idea of a good time).

My kid was having a seizure.

Seizures are not something we've ever dealt with. Quite frankly, I thought we had dodged that little autism bullet (if it is at all related to autism). It was the scariest morning of my life. I literally thought my kid was dying. It took him a long time to snap out of it. He even lost speech for a while. Thankfully he remembers nothing, thinks it's cool he got to ride in an ambulance, and thought the ER was fun...they had saltines and ginger ale. Party down.

I really don't think paranoia begins to describe how I've felt since. I don't want to leave him along for 2 seconds, and have forced him to sleep with me all this week, thereby forcing my poor husband to the couch (but he has a dog to snuggle, so don't feel too bad for him).

I've tried not to Google grand mal seizure. I've tried convincing myself that B might be one of those kids who randomly has one seizure, then never again. We thankfully got in with a neurologist tomorrow afternoon, and I am anxious to just get on with it...whatever "it" might be. I am sure there will be EEG's and tests...protocols for school and camp...I just want all our ducks in a row. I want to know what to expect. I want to know more than I know now.

And I never want to see my child like that again.

Some other, personal stuff went on this weekend that I'm not at liberty to share, but all in all, I've had a lot on my mind, and am ready to hibernate for the winter. I am thankful for some friends and family who understand that I am currently half-human, and who are giving me the time to live in my own little world. Pretty much all I can muster is being a "mom" right now (so, I guess I'm thankful for an understanding hubby, too).

The one light in all of this is that last week we secured a permanent school placement for Katie, which is huge, and wonderful, and takes a giant weight off my shoulders. Not that the universe needed to replace that weight, but that's life. I'm glad K will remain somewhere she is happy, and thriving. One hurdle down, a zillion to go.

But, these past couple weeks have put a lot into perspective. Life is short. Anything can happen. I'm in control of pretty much nothing. So, the things I can control, I will. I need to make sure my family is happy. I need to make sure I am happy. I need to be selective with those I let into our lives, and not live in that glass half empty way. In the end, we are all responsible for ourselves, our actions, our decisions. How we choose to live. What is important, what isn't. What stress is necessary, and what can be left behind.

(Blah, blah, blah, etc, etc, etc, please stop waxing philosophical, says the audience, eyes rolling).

Love,

Your favorite pseudo-blogger (I am, right?)

J

There is Love...

K and B do not get along. It goes beyond sibling rivalry. The challenges they both face make it more difficult to be flexible, to control their emotions, to walk away when they get upset.

Sometimes I feel that I am a full time referee.

But, there are moments of magic, where they play so well together, it makes up for the times when they...don't.

Or when B shows great compassion towards K when she's having a particular difficult time, even if she doesn't want to accept it.

Or when K tells B that she loves him out of the blue, and they give each other a genuine hug.

I try to focus on those times. Remember they really do love one another, even when their actions speak the exact opposite.

Then, last night, K came up to me and said she wanted to buy B a Christmas gift. Sure, it was two days before Christmas, and the last thing I want to do is go anywhere near a store, but none of that mattered.

She asked, on her own. We hadn't talked about them choosing gifts for one another. I hadn't come up with the idea myself (as I sometimes want to when I hear of other siblings doing the same). It was all her. She thought about her brother, without being prompted, and wanted to do something for him.

Because, regardless of what happens, there is love.

Even when our kids struggle the most, I believe, truly, truly believe, we are a family who has deep love for one another. Between the children, it might not always show, but it's there. An unbreakable bond.

And that's the only Christmas gift I need.

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