I Blew It: A Lesson in Anger and Patience

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I'm not perfect.


I know, right? Shocking. Or not so much. I am a human. I make mistakes.  I sin. I yell at the top of my lungs in front of the people I love most in this world. And i feel like a world class heel.

Remember the Looney Tunes characters when they get mad? Yeah, that was me. I'm not proud of it. There are all kinds of excuses. It's Monday. I was hungry. Blah blah blah. 
   The truth of the matter is I let stress and anger get the better of me and I blew my top. Two people were in tears and everyone in the house was stressed. 

The King James bible says in James 3:8,  But the tongue can no man tame; it is an unruly evil, full of deadly poison.

Anger is as contagious as the measles. One person goes off the deep end, others follow. It isn't pretty. What gets me is I've been studying about anger and patience in my quiet time. I've been praying about it. I've been trying to learn the lessons God would have me to learn. I'm trying to see this morning's screamfest not as abject failure, but, as a friend touched on yesterday, a moment of clarity. 

One of the verses that stood out to me in today's study was Luke 11:40

Be ye therefore ready also; for the Son of man cometh at an hour when ye think not. 

While that verse actually means to have yourself ready spiritually when Christ comes for his bride, I think it can also be applied to not letting your guard down when it comes to sin.

The bible tells us  
Be sober, be vigilant; because your adversary the devil, as a roaring lion, walketh about, seeking whom he may devour:  1 Peter 5:8
  The end result of the big blow up?  I apologized, the offended party apologized, and we hugged. I still feel like a world class heel, but maybe that's a good thing right now. It's like a mental spanking. That sting can remind me to hold my tongue and speak more calmly next time.

Catching Up, Autism, and Understanding: A Little Advice on How to Help and What to Do

***Heads up: The following post is open and honest. I did not hold back, just spoke what was on my mind. Please remember that in no way is there a danger for my son, husband, or myself at this time. There is no need for "heroics" of any type such as anonymously sending "help." Feedback is always welcome as long as it is respectful. Thank you.


Hello all, and happy Monday to you! I know some of my regular readers are probably fainting from shock right now. Whoa! Two posts in two days? I know, right? It's about time i got back in gear with my writing. It's a beautiful hot day here in Gawgia, and both of my guys are napping. That means I can get a lot of cleaning done...or I can write. Guess what I chose? *wink*. Truthfully though, I have the dishes started and I've got a load of laundry out on the line, so I'm not feeling too guilty right now.
    It's been about a month before yesterday since I blogged. I think it was a blend of losing my muse and just being too overwhelmed to write. The autism battle rages on, ya know? There were some days that I was seriously ready to throw in the towel. In fact, there was one day that J woke up ready to fight, and by the time the Hubs got home, I was done. I told him, take him to the emergency room, I don't want to be a mother anymore. And I meant it. I was completely at the end of my rope. We took him to the E/R and told them what was going on. Although we had waited just enough for J to calm down to the point it would be safe to take him, he was still agitated. They ended up giving him a shot to calm him down further, and social workers from Behavioral Health was called in. By the time they got there, it was about two p.m. We had been there since about nine or ten in the morning. I had calmed down some, enough to no longer want to relinquish my son, but I was still simmering. 
     First thing we fired at the poor soul who came to help: He needs to be in a hospital so his meds can be regulated and they can figure out what works.  Pat answer back: The State doesn't do that. Here's what we can do: Yada yada yada. A lot of back and forth, questions asked, blah blah blah. End result? Baby Bear came back home with us with a new prescription to help the rages, a plan was put in motion to get some help (in 9 months to a year after the paperwork is completed, which is currently at a stand still while we wait to hear back from schools and doctors. In other words, red tape), and seven home visits to see what they can do to help. 
  That was about two weeks ago. The home visits are going well. I found out that yes, there are programs for J in this dinky little town --but he isn't eligible for them until he gets accepted for the help described above. Wonderful! And why for the love of all that's merciful, has this been a secret for the two plus years that this area has been aware of his needs??!!?? Aaaarggh!! Seriously, folks, we could have had this ball rolling ages ago, if someone had been nice enough to clue us in. We might could have avoided some of this frustration, ya know? 
  I've always been honest on this blog, especially when it comes to dealing with autism, because it might help someone reading it. I'm going to state here what I told the social workers, and please do not overreact to what I say: Why is there often no help for parents struggling with a child who has a severe case of autism, until the family ends up on the 6 o'clock news because either the parent or the child or both are dead or hurt or something to that effect? It's not all that often that it happens, but folks, it happens. For those about to say it,  NO, the pat answer isn't institutionalization. 
    These are our kids, not common criminals. Think about it for a second: You're in a foreign land and don't really know how to communicate what you need. Something is bothering you, and you have to get someone's attention. The frustration can build until something happens. It's not a pretty sight. 
   Don't worry, J is safe, and so are the Hubs and myself. He's a pretty amazing young man who is really very sweet. Unfortunately, we aren't sure what sets off the rages and this needs to be addressed. He's seeing a new neurologist this week, and we've been told that there is a good chance they will take him as an inpatient to see what can be done. We are hoping and praying that they do.  It will only be for a few days, but this is sorely needed.  If it doesn't go through, his psychiatrist is working on that end for a different hospitalization. Personally, I'm rooting for the neurologist on this one, but either way it needs to be done. And I'm here to tell you, a hospitalization like this shouldn't have to be a last resort, which is what I've been told it is in this state. Doctors, insurance and the state need to stop turning a blind eye to parents who need help.
  Now, those who have kids just diagnosed with autism or recently diagnosed: how does this affect you?  No matter where your child falls on the spectrum, ask questions. What helps are there? Are there programs available? When a child is first diagnosed, the first thing should be Early Intervention. It's like a pre- preschool. They will work with your son or daughter to help them function better in this world. If you'd rather not have them in a public school just yet or want more, ask questions. Read everything you can get your hands on. There are things you can do at home, starting with some of the things they do at school and therapy with the child. There are ideas all over the web for things to do with your child when they are young. 
    Also, ask about the Medicaid Waiver. It will help. There is a waiting list, but get on it ASAP. It cannot hurt to ask. It is better to be over prepared in this case. 
  Get in contact with others who have children or young adults with autism. There are support groups in a lot of cities, so ask your pediatrician or check in the local paper or local parenting newspapers. If none of those are available in your area or you want some one on one information and support, ask. I don't have all the answers obviously, but I've been in the trenches so to speak for nearly twenty years dealing with autism. Feel free to contact me privately if you need someone to talk to. 
   Number one on the list: Set up a support network for yourself. Family, friends, good doctors, websites, etc. Surround yourself with people who will pray for and with you, someone who will babysit for you now and again so you can breathe, someone who will just let you cry and scream and vent. I cannot stress how important a support system is. Trust me on this, I've done the alone thing (along with the Hubs) because it seemed like although some cared, they just didn't know how to help or what to do.  For friends and family of those with a diagnosis of autism, listen up: If you can, offer to give the parents an hour or two by themselves. They need this. If you can't, that's okay. Pray for them continually. Let them know you support them. Prayer helps. Dropping off a meal once in awhile so that's one less thing Mama has to think about is extremely helpful.  Or just plain listening. No judging needed, just being there with a shoulder to cry on can help. 
  While in some ways I chafe at the thought of "it takes a village to raise a child", it comes in pretty handy when you have a special needs child. Support is needed. The world can be a pretty lonely place at times, and when a child with autism is added, it can be even lonelier.
 

Some Lessons are just too Hard to Learn...

And Those are The Most Important

I'm in the midst of cleaning up my act (and the house). If you have read any of the last few posts you know this. One step at a time. I'm keeping the dishes clean, I'm sweeping my kitchen, doing the laundry (and taking some steps toward putting it all away and donating what doesn't belong. I'm following Simple Mom's challenge  of decluttering one hotspot at a time for four weeks.

  But I have a son with autism. This is one of those times I really want to give up. In order to begin on my pantry I had to take off the blinders to see a moat of trash and junk that had to be dealt with before i could even begin. I knew it was there, I just chose to ignore it while I dealt with other things. The moat is gone now.  Then I needed to hang a load of laundry. The Hubby was in the bedroom making the bed, which is another task I want to complete each day. In just five minutes, the previously sleeping J woke up and noticed that the fridge was unlocked and unguarded. He took advantage of this to rid us of the sour cream. He thought it was a lovely snack. 

  Instead of realizing that it was OUR fault, both adults threw a tantrum. Short lived, but it happened. Two lessons here: 1) The fridge has to stay locked when no one is available to keep an eye on it. J only knows that he is hungry and will grab what's available. He doesn't understand a lot of times what is good for him or when to stop, and our pocketbooks are not that deep. Even if we were really well off, we can't allow him to eat anything anytime he wishes. It would make him sick.

 2)Getting angry at a child who is independent and just trying to find a snack isn't very productive. We have to vent a little sometimes, but we need to take responsibility and handle this situation ourselves. 

  Can J be taught to stay out of the fridge and ask for what he needs? Maybe. It takes time, patience, and a lot of energy. He's not dumb by any means. He can learn many things. But being human, and having a child's mind most of the time, he's going to make mistakes. We just need to figure out how best to help him.

  Am I going to give up? Absolutely not. I've worked hard the last several days on this house. I'm not discounting the countless hours I've spent before trying to figure all this out, but this time I think I understand. I wont say that house cleaning gives me great joy, but taking care of my family does. Seeing 'the abyss' turn into a home. I am disorganized, but I am changing. Not because someone else insists I have to, but because I want to. I need to. For me.

  I want a home that I can feel good about inviting others over in. I want to be able to write, or make cards, or otherwise craft, or spend time with my family without feeling guilty that I'm not up folding laundry, or sweeping, or doing dishes.  I know a lot of people don't understand why I cant get the concept of cleaning done, that it's something you "just do." That was the answer I got when I asked someone how you get things done. To me that's as foreign as handing an algebra book to a kindergartener and saying "figure it out." I'm not stupid, I'm not lazy (most of the time), I'm just overwhelmed. I hesitate to say that I'm proud of my accomplishments lately, because I see I have a long way to go, but I'm happy with the progress I'm making. My husband seems to be as well. As long as we both keep this up, especially me, I'll have a home that wont make me cringe every time someone comes by. I can invite others over for dinner or whatever. I like that.  

Special Needs Battle Fatigue: A Mother's View

There are days I want to give up. It's simple. Just pack a bag or two, walk out the door, and never look back. But I choose not to. 
  I am the mom. I deal with (most of) the household chores, I have the sweet moments as well as the frustrating moments of motherhood. My house is battle scarred and worn. My spirit sometimes feels that way as well. As I sit here and type my son is listening to classical music and calming down only slightly from an hour long hissy fit that has involved using the "eat" sign" (he has food in front of him and he's threatened to throw it several times), banging on every surface within reach, wanting to hit or bite (clothing mostly, but his hand as well, and he looks at me as if I were a steak dinner. Precisely why I'm on the other end of the room, trying to remain calm and not escalate the battle; ignoring his tirade yet watching to see that he does not break anything nor harm himself). 
  I called my husband at work. I'm in this one alone, as he has to work. At the moment the battle has worn down to his shrieking now and again, trying to gain my attention. Resolutely I focus my eyes on the computer screen. His rants are fueled by frustration, anger and attention (the first two on both sides) so I've learned to simply monitor.
  This storm has been brewing for a few days I fear. He's been mostly good but there have been signs. Signs I chose to ignore because he seemed to be doing so well. Yet the knowledge was there in the back of my mind, knowing a meltdown could occur. I try to keep his schedule as normal and predictable as possible, but life is never truly predictable. A meal is sometimes late, someone forgets to mention a doctor appointment, someone is wearing a fragrance that he doesn't like, or he hears a song that irritates him (J, the lover of music, is a critic. There aren't many genres, musicians, or songs that he detests, but protest he will when one happens along).
  So, frustrated as I get when these things happen, why do I stay? Others have walked away, seemingly without a qualm, because they could not handle it. I'm not judging them, merely observing. I stay because, angry as I get, I love my husband and son. I also know what Jesus did for me. He suffered so much more than I could even begin to imagine. For my sake he did this. I know I've caused the Father much frustration in watching me make mistakes, yet he continues to be there, continues to love me. I stay because the joy my son gives me far outweighs the heartache and frustration. I may not like being on the frontlines alone day after day, but it happens. And I plan to take some R & R soon. It needs to happen so that I can continue to do what I do.
  Battle Fatigue is real, and it happens in families with special needs (whatever they may be) just as it does with soldiers. Both need love and support, or things begin to fall apart. Speaking as the parent of a child with autism and a seizure disorder, friendships are vital. Understanding is needed. So what can you do? Be the support that can't always work online.

• Ask questions if you don't understand. Read. Don't assume the worst of a child who is loud or does something to startle you. Not all kids just need discipline to handle the situation.
• Offer to take the friend out for coffee or ice cream or just to talk. Better yet, offer to take the child for a half our or an hour or two, so the parents can clean or relax a bit.
• Putting a child in a home or a school away from the parents is not always the answer. Sometimes it is best for the child (as well as the parents) but I wonder if sometimes families go that route because of lack of support.
• Pray. Pray for the family, with the family. 
• Just plain listen. If you can't help any other way, send a note, make a phone call, or be available to answer the phone.

I Want to Give Up

It's November first and I am living in a house of horrors. No one really understands what it is like to have an eighteen year old who is really a sweet kid most of the time but for whatever reason turns into a monster that I can't handle. I'm amazed my blood pressure isn't through the roof. We live in a rental  and sometime soon I'll be replacing a ceiling, several sections of cheap paneling, a window, and a few light fixtures. This is the ugly side of autism. 
  All in the news when you hear autism its about a child who wandered away, or this family "cured" their son's autism, or how vaccines are not causing autism (but here's a settlement for this family and that family because of it. Which is it, scientists? I'm tired of the games.) You rarely hear of the adults with autism. We work with the kids as soon as we know that autism is the problem, hoping to avoid major problems down the road. But try as we might, some fall through the cracks and are still needing enormous amounts of help when they become adults. I happen to be mother to one such adult. He's nonverbal, still not fully potty trained and those accidents  can be a bear to clean up sometimes. 
  Right now the "answers" I get are to either a) continue to manage him myself the best I can while putting up with self righteous, indignant, judgemental people who think that I shouldn't have a problem in the world keeping the house spotless, much less dare to have a section of ripped paneling for more than five seconds, or b) find an over crowded, under staffed hospital to place him in, where most likely he will be over medicated to make him easier to deal with unless I stand on top of them. There is option c), find a private residential home for him. The waiting lists are as long as my arm for those and hugely expensive. We don't have that kind of money I'm afraid.
 I'm not looking for sympathy.I'm definitely not looking for some well meaning social worker to come and drive me insane with her "help." What I need is... I don't know. Someone who truly understands. Someone willing to ignore the judgements they have in their heads and actually get to work to help. Someone willing to take J for an hour or two so I can get more work done.  It's not easy.  I don't expect it to be. I just get tired of pretending that everything is okay when it isnt. 
  I want to eventually own a home. I know that J would still be messing up walls there, but it would be mine. I could adapt it to be a bit more J proof.I wouldn't be worried that the land lord will see it and want to throw us out.  
 Sometimes I wish I believed in cloning. I could use an extra me or two, to help keep up with things around here. But as in the movie Multiplicity from several years back, that would come with its own problems. For now I do what I can and hang on until my husband gets home from work.We manage. We cry, sometimes scream in frustration. But we keep going.

Life With Autism: Meltdowns

The day started out great. J was in a good mood, I was in a great mood, things were getting accomplished. We had to do laundry and get a few groceries so we had lunch out. And the day spiraled down from there.
  He did well at Burger King. Ate everything in sight. Then we went to Wally World. He hates Wal mart. He sat down at the pharmacy area nearly the entire time but he was not happy. We left there and was about to go do laundry. He was still upset so we thought, okay, we'll go get him something to eat because he's acting like he's still hungry. He ignored the chili dog we got him and focused on the hot fudge sundae that I had. 
  He became calmer so we went to the laundromat. Big mistake. Not crowded, but the tv and the machines were loud. His bad  mood was back. Ripped his shirt completely apart, shrieked,  and attacked Jim and one of the windows. Amazingly Jim didnt get  bitten this time, but the window didnt survive. It spider webbed from top to bottom, and this is a large store front window. Yay. I gave him medication to calm him --which apparently did not take effect until we got home; he's in his Archie chair, docile as a lamb. The owner of the laundromat was notified before we left and he has Jim's name and the phone number. So far he hasn't contacted us, but I know it's coming. All I can do is pray for mercy because we can't afford to replace a storefront window at this point.
  Having an adult child with autism is not easy. And that's putting it mildly. The meltdowns don't come often these days but when they do... look out. I don't really know what to do. We were told there is a place that could take J for up to a week at a time when he's out of control. No name, no address, lotta help there.   We could go to the emergency room where they will either give him a shot to calm him down or they put him in an isolation room till he calms down. Neither option is good. We could give up custody and let the state put him in a facility. Not what I want to happen, either.  I suppose we could just stay home with him, take turns going to the grocery store or whatever so he doesn't have to deal with the stress and the public doesnt have to deal with it. I'm not real thrilled with that option either.
  I'm holding on but barely. I know there has to be an answer but for some reason I'm not seeing it. I love my son, but I can't stand autism. I hate what it does to him. I'm angry that he was affected by vaccines and who knows what in the environment. I want answers. I want a cure. I don't want this run around that the government and health officials like to give parents. I want honesty. Most of all, I want to be telepathic so I can read my son's mind. I want to know what he's thinking, what he's feeling. Playing 21 Questions every time he's upset is hard on us both! Somehow I don't think I'm going to get any of those things.
  Don't get me wrong. Most days are great. It's just the meltdowns that wear on me and make me wonder what's best for my son.