Monday, June 23, 2014

A Long Week!

We had a long week! Last Monday, we went down to our state's campmeeting! It is a great time! It is like a reunion, or Vacation Bible School for the whole family! It seems like it takes forever to get here (it usually arrives about the same time summer does, luckily), and then when it's here its gone in a flash! 

This year, with a baby, it was pretty impossible to go to any classes. The evening meetings were good, baby was good during those. Most days she actually slept through them. 

My son had class at least 2 times a day, there was a 3rd but he didn't go to it except one day because he gets overwhelmed from all the activity and other kids.

He loves being around others. He is very outgoing and social. But his ability to deal with this is pretty low. He gets overwhelmed, tired, cranky and snotty! Add to the fact that we weren't getting back to my great aunt's house until 9-9:30, and sleep was 10 or after, and you've got one tough little boy. He is always up for a great time, but he is glad to be home today. In fact, at grandma and grandpa's. :P 

I loved it. It was fun. The Sabbath fellowship is amazing. It feels like heaven to me. They provide a huge potluck lunch for hundreds of people, and then people just sit around and visit under the shade of the trees on the campus. Talking about God, or just enjoying the weather. I haven't been to one yet that was ruined by rain, so I guess we've been lucky! 

The best part was seeing Shawn Boonstra again. He has been given the most beautiful message to share with people. I consider him a great friend. His 2 sermons were beautiful, and perfect. Just amazing testimony and everything.

Believe, Pt 1

Believe, Pt 2

I highly recommend part 2, but part 1 is great as well. Part 2 is his story, so that's probably more interesting. But part 1 is about how God does amazing things with the evangelistic series' he does. It's pretty awesome stuff. God is incredible. 

Moving on to more Aspergers related things, I was exhausted! When you're going going all day (even going to my son's class it was a lot of going, not a lot of relaxing or recharging), you don't get time to yourself, and chasing baby is stressful, though she was very good. So at night when we would get back to my great aunts, it would take baby a while to konk out again and then I would take time to repack for the next day, and rearrange things and just chill out. So it was 12-1 am every night. But somehow I managed to survive. It's amazing the amount of sleep you don't need when you're doing something fun!

Anyway, I just wanted to post a quick note. I am glad to be home and after shopping for groceries today, I have no plans to be anywhere. Just home. Whew. The weather is finally hot and sunny. No more rain and 50s! And I have a low tolerance for sweat, so unfortunately, it is AC month. That should show up nicely on next month's electric bill. Joy.

Tuesday, June 3, 2014

People Just Need To Listen

I've been through several things in my life where I knew what I was talking about, but no one would believe me. I am not the kind of hypochondriac that freaks out about some little symptom and overreacts into thinking that there is something wrong when there isn't, though I know there are a lot of people out there like that. I research what I'm talking about and I try to figure it out for myself before I go running off an hour away to the doctor, or whatever.

What drives me crazy is that you can do all that research and find out what you're talking about, only to encounter the medical professionals who do not know what you or they are talking about. Of course, in their position of "authority" or "power" over you, will overrule your research and feelings and opinions and decisions and claim that theirs is the right one. So often you can end up feeling discouraged and sometimes even that maybe you are a little crazy. 

I love it when we find out that we aren't the least bit crazy. I love it when our feelings and research is verified and supported by someone. I love it when we can help others through what they are going through because we went through it or we found a way through it or we found a solution. 

I've found my support and verification. Now its just the battle of finding out where to go from here, how to make it work. Usually the hardest and most time intensive part. :( I don't like to talk on the phone and the email I sent 2 weeks ago has not received a response, so that route did not work. I have a hard time hearing, and I have a hard time remembering all the information given. I'd much rather have it in print form so I can return to it to remind myself or just reread the information. I try to take notes, but usually they talk too fast and I end up missing parts of what they say from writing.

In the end, I realize that more people need to listen. If the doctor, that first nurse in the hospital (who it was claimed that she was the lactation person on shift that day), the ENT we saw (who did snip the lip), if any of them had just LISTENED to me, instead of blowing me off with a "she's fine".... we would have had it all taken care of 10 months ago, and I wouldn't feel like they all let me down. You have a parent with a concern, especially when she's mentioned it at every appointment since she was born, wouldn't you take the time to look up information about it? Wouldn't you take her word for it and just do what needs to be done? And what about the parents who had to wean early, or lost their milk, or never could get the breastfeeding relationship figured out because their baby was lip or tongue tied and you didn't even have the information to help them??

This is so wrong, and so frustrating. I'm hearing from more and more people who are finding out that their kid has lip and/or tongue ties all along! More people who were never told that it was a possibility, never told that their troubles nursing could be caused by a tie at all.

I watch my daughter as she clucks her little tongue and I can visibly see the tightness under her tongue. The IBCLC that I saw took a 2 second swipe under her tongue and agreed with my 10 month long knowledge of the situation. Why did it take 10 months? Why didn't a single doctor or nurse this whole time feel what I felt, or just take my word for it?

It's frustrating. It's annoying. It's a complete ignorance of the medical community to ignore my knowledge and feelings by saying things like "she's fine".

I'd like to say I've found doctors who understand the issues here. The ones I have heard of are a distance away. I do have 4 places I am going to try calling. One is out of state (just barely). All are over 2 hours from home. It shouldn't be that way. As many people as I'm hearing are having tongue tie lip tie troubles, this should be nation wide, in every hospital and clinic that deals with babies.

If I found doctors who understood what I'm talking about and just took my word for it, and believed that I know whats best, I would put my money there. But I haven't.

For a long time I blamed myself and just put myself down thinking that maybe they're right, I'm just being persistently autistic and I must be wrong.  That's the problem. They make you feel like you're stupid. How many stories do we have to hear where the parent just wouldn't give up and found out something serious was going on and saved their child's life by not giving up? How many of those stories do we have to hear before the medical community starts taking moms seriously?