Sunday, June 28, 2015

A Life Update

   Life for our family is intense right now. In fact I can't remember when it was last slow. After thinking really hard I think that it may have been last August, right before my first hospital stay.  I am on auto pilot right now trying to conserve and just get by. Here is an update...
    The verbose one finally has an appointment with an ENT, July 10th. She has been having a harder time hearing lately. So, we are very anxious to have a game plan set up.
   We had her birthday party yesterday and it was good! There were fifteen or sixteen kids there once you add on siblings. It was mostly class room friends. It was sweet to see just how close they all were. It was a sensory overload for my son. So, he hid in he room for the most part. I knew the night before the party that I had over done it. I pushed thru and by last night I couldn't walk without off the charts pain. Today I have to be sitting with my feet up all day in hope for a normal day tomorrow.
   My son has been having a hard time still, we are just riding the storm. Now that the birthday party is over I am going to switch my shopping to days when he doesn't have to come. It is really hard to see him in pain. I have a feeling that his future might include a cabin in a small town. That is where he would be the happiest. We have begun the process to have him institutionally deemed. It is something that all autism families should look into. It will make it so that once my son hits eighteen he will be eligible for State assistance if he is unable to work. It made me physically sick to make that decision. But, I know that I can't let my own pride hurt him in the long run. Some of his disabilities that are in addition to his autism may make it so that he is limited as far as working and driving are concerned.
   The husband is currently working two hours away and coming home every night. It is already starting to take its toll. He is doing the four hours of driving six days a week on top of ten hour work days. They are in the process of setting up a camp spot closer for everyone to park their camp trailers. When that happens we will be spending part of the week in the mountains and part of it at home until school starts again.
   I am in a holding pattern right now. I am on a steroid to up my blood pressure. It really sucks and I tried life without it. After four days I went back on it. Having super low blood pressure is really hard. My cardiologist used the word "chronic" which made me cringe.  I hate medication but I don't trust "natural" remedies. I am doing everything nutritionally that I can . The last doctor that I saw felt that it is viral damage that may of may not be permanent. If I heal it may take years. I will have to just do what my body needs and be patient.
   I guess that about wraps it up! Our little family into a not so little nut shell.  I guess that you can tell by the length of it that it couldn't fit in a normal status update!

Sunday, June 21, 2015

For The Fathers

Father's day is right around the corner and I wanted to be more prepared than what I was for Mother's day. This post was written over several days. I have thought about writing about my own dad. But, I think that it should be in a different post. This one will be about the man that my kids call dad. I haven't really talked about him much, so, here it is.

   What is there to know about the husband? He is my other half, a loving dad , my best friend, a kisser of booboos, a warm cuddle and someone to play with. I can sum him up in one word... Love. When it comes to our kids he is their everything.
   Six days a week he wakes up at 3:45 am and gets home at 6pm, he never complains. For now, we have decided, for me to be the stay at home parent. It is so hard to watch him work his bottom off to make ends meet. His one day off we try to let him be so that he can sleep. Once he is up he spends his time playing with the kids. Nothing makes me happier than the sound that they all make. Laughter is the sweetest music.

 Everything that he does is for them, for us.

   When I am tired and grumpy he tags in with his gentle voice. Every night before he goes to bed he slips into the kid's room to check on them. More than once, when they were babies, he woke them as he was kissing their little cheeks goodnight.
   I remember, before our son was born, just how adamant he was that he wouldn't change diapers. After the long labor and my emergency C-section, he was the only one who changed the diapers for the first four days. Those were the first of many diaper changes to come.

Right after my emergency C-section.
  When the verbose one was only nine months old I had to go back to work to help pay bills. I was working graveyard shifts five nights a week. For two years he had night duty, with both kids, for five nights a week. He changed many diapers and gave bottles. I honestly think that he bonded in ways, with the kids, that wouldn't have happened otherwise.
   Yesterday my niece and nephew-in-law became first time parents. The delivery was much less than ideal, but, both mom and baby are alive. It brought back emotions and memories of the less than ideal delivery of my son. I realized just how much of being a parent happens on that day. You are almost reborn thru the pain of birth. 

My husband and son on a fieldtrip.
  The special needs dads out there that are active in their children's lives, you are my hero. Your level of dedication and love is more than I have ever seen in any other group of dads. On behalf of all of the children, moms, grandparents, communities and the world, I thank you. I hope that you get to spend the day with your loved ones and that your day is blessed.


Sunday, June 14, 2015

The Summer Regression

   When I started this blog I did it with the intent of someone out there going, "Oh, that's me too!" We went for so long without a diagnosis. My son missed out on early childhood interventions. More than that we went for years with the condemnation, hateful stares of strangers and the general frustration. We had years of knowing that we were doing everything right but with the opposite results. I don't want anyone to go thru the same thing if it could be helped. Sometimes that includes sharing the hard times.
  With school ending and change in our routine he has regressed. To be honest I expected it and yet I am still surprised. I know, right? He is seven you would think that I would be past this, but...NOPE.
   His OCD has become more pronounced and the anxiety is thru the roof. Getting him out of the house to go to a, (the evil "P" word), party today. Once we were there he tearfully refused to get out. I had to get him out of the car, it was too hot. After he was out I ended up having to hold him, on their front lawn, in the shad. I rocked him and calmed him down. I had my internal moment of frustration. I knew that he was just wasting energy and once inside he would be ok. Once I knew that he wouldn't run I let him go and guided him to the front door. He almost didn't want to go inside. He was coaxed in by the birthday boy's dad. He had to look at the crawfish. It took a full hour to get him in and out with the other kids, but, he did it.
   This is where I think that my thinking splits from others. My son, my sweet son, is struggling. Yes, I think that this might be the last year that I will have the strength to hold him. That terrifies me. But, not once do I blame his autism for it. Perhaps, it is a gift from waiting so long for his diagnosis? I am simply looking at him as him and have never thought twice.
    At the birthday party I found out that one of the verbose one's classmates had a little brother that is about to be evaluated. I talked with the little boy's mom a lot. It brought back memories from when my son was little. Her son actually interacted with my son which surprised her. My son has a special way with other kids with special needs. I think that it is a gift that he has. Thru his own struggle he is learning something that I could never truly teach him, compassion.
  As I told that mother, new to our world, there is a constant ebb and flow. So, we ride this wave of unknown. My son struggles, I struggle, our family struggles. I know that the wave will peak. Where it leaves us at the bottom? That I can't answer, only time will tell.

Friday, June 12, 2015

An Open Letter To You

Dear Everyone,
  I appreciate everything that you are trying to do and say. But, I need you to just stop. You might wonder what is the best way to support me? That is a huge, loaded question that I might not always be able to answer. Okay, maybe more like, I am NEVER able to answer it. I can tell you what I don't need you to do. These are hard fast things too. If you stop and think it might just be the way you don't want to be treated. I might not even blink if you do one of these. I am a VERY forgiving person and feel bad if my feelings are hurt. However I am reaching my breaking point. I might jump and give a sarcastic response back... then feel bad later... even if you were out of line.

Here is my little bit of advice if you want to support your friend. These are things to NEVER do.

1. Don't judge me.
I am doing the best that I can for what I have on my plate. If you think that you know everything that is going on with me, you don't. I may seem like an open book; I'm not. There is a lot that I never tell anyone. You may think that you have come up with some new way of eating that is THE only way... I can almost promise that I have already tried it.  So, don't judge me, I'm not judging you.

2. Don't push your church or beliefs.
   I have a priest. I go to my own church. It makes me feel like you think that I am not a REAL Christian. Guess what you aren't Jesus. If I was wanting to go to your service, bible study, church anything, I would ask. I will never ask you to come to my church instead of yours. That would be rude. Instead of bringing me closer to God you are hurting me.

This is a biggy, so, commit this to memory!

3. Don't offer medical treatment options unless you are asked.
  I have done the gluten free, grain free, whatever- you- can- suggest. No a chiropractor can't fix it. It doesn't matter if it is my son or me.  If you have suggested it so have others. I believe in God and don't feel that I need science to confirm it. HOWEVER, when it comes to everything else I rely on science.

4. Don't try to change my mind.
   Please see above...SCIENCE

5. Don't bring up anything that is serious.
   Incase you haven't been reading my stuff lately... I am up over my head with serious. I think, breath, eat, drink and dream about serious stuff. I want to only discuss silly, funny stuff. Coffee and chocolate are appropriate topics too.

6. Don't want to get together with me unless you want to hear me spill my guts.
   If I am having a day where I need to talk, it might come on without warning, Then be prepared to listen. Don't try to fix it because you can't. Just listen and give hugs.

If you have been brave enough to make it thru this letter you might realize that you and I are much more a like than you realizes. I hope that if I happen to do one of the above, feel free to whack me on the head.

Monday, June 8, 2015

Stress Soup

  I have had to step back and not write so much lately. I am not well, to be honest. I walked up to the scary pick up gate at the kids school to hand out the verbose one's birthday party invitations. I was almost surprised when one of the moms asked me, " what the heck happened to you?" She was referring to my twenty-four hour heart monitor that was strapped to me.
  I have come to the point when abnormal is my normal. I don't even ... yah normal? Bwahahaha,(insert maniacal laughter). I have added medication to my already disliked line up. When I saw my cardiologist last week he talked about upping the steroid that I am on... and I wonder why I feel stabby... a lot lately?
   Today I got to go in a have an ultrasound of my carotid artery. Tomorrow is a tilt table test and I am not even remotely excited about that. Google it and you will know why. Go ahead I triple dog dare you.  Because of the test tomorrow have had to stop my steroid. That means that I am very sleepy today. Darn low blood pressure!!!
   I'm guessing at this point you have figured out why I haven't been writing... I am whining. Yes I would like some cheese with my whine.
  The kids are out of school for the summer. They are both having a rough transition. I really want to take the school board members into my home just so they can see how hard change is for autism families. I think that they might reconsider starting school back up for a couple weeks only to have a long Labor Day weekend.  
  Well, here is to tomorrow! I will be in and out of my Facebook page. There is a chance that I might have to stay and it not be an out patient thing. Send all of your good thoughts, prayers, juju and what ever else you can send my way.  Oh, I won't complain if there is chocolate and coffee either... feel free to consume it as a sign of solidarity.