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.
 

I Am My Father's Daughter

Do you know what the above vehicle is? It's called a Volkswagen Thing. I kid you not. The picture is from the offical VW Thing website, http://www.dastank.com/    My Dad had one back in the early 1980's and he, along with most of the rest of the family, loved it. I don't remember where he purchased it, but i do know he got a good deal on it.  He almost always did, no matter what he bought. His was painted flat camouflage and it did not have the roll bars on it. The canvas top was down most of the time except in rain or really cold weather and it had clear plastic windows that could easily be taken out. During the summers we kids (teenagers and young adults at the time) liked sitting on the back end, not on the seats --until a military policeman told us kindly to stop that.  I wish I had a picture of my father and the Thing. I know someone in the family has one though, and when i can I will make a copy to display on this post, as well as to frame.
   My Dad died when I was a young teenager, about 15 years old. He didn't get to see me graduate high school, didn't get to meet my husband or walk me down the aisle, and my two were the only grandchildren he never held. My oldest son's grave, however, is right next to his Papa's.
   During the fifteen years that I had my Father on this earth, he taught --or tried to, anyway--many lessons. It's only years after "growing up" that I realized what many of those lessons were. He taught me to ride a bike and attempted to teach me typing and soccer, but not in the way you'd expect. He knew what I was interested in and as he could, he bought the bike, the typewriter, and a soccer ball, and gave them to me. With the bike, he told me how to use it instead of the movie scene where the Dad holds on to the bike and then lets go. I wasn't happy at first, but after trial and error I figured it out and then couldn't wait to show him that I could ride a bike.  The other two were similar experiences. I eventually learned to type, with the lessons of typing class in high school (I failed miserably in that class)finally kicking in when my husband brought home our first computer in the 1990's. Soccer? Well, I kicked the ball around, but never really learned how to play.  I never really understood the real lesson behind all three of those activities: I was being taught independence, and he believed I was smart enough to figure things out for myself.
    We didn't have a lot of money when I was growing up, but I never really realized it. We always had plenty to eat and our needs were taken care of. But lack of money for new things never really stopped my Dad. He was the one likely to stop at yard sales, not my mother. And to her chagrin, it wouldn't phase him to stop at a dumpster if he saw something that captured his interest. When a used van he bought didn't have seats in the back, he found a foam rubber chair that could be unfolded to become a bed and placed it inside. And in the very back he built a bed. It worked for our needs. A man who loved camping but being on the ground not so much, he bought a burned out pop up camper  bottom from someone he knew. At first he simply used it as a trailer to haul stuff in, but eventually added a tent to it. These days I find myself trying to think like he did, seeing the potential in something others might not find valuable at all.
  As a kid, I had a love/hate relationship with the home we lived in. It was quiet unless other kids were there, and neighbors weren't right on top of us. In fact, the closest one was a little less than half a mile away. But at times it could be lonely for a young girl growing up. There was no cable television out in the country. It was an older house so there were problems with the well pump and such at times. Not very fun, especially in winter. But being retired from over twenty years in the Army and an avid camper and as well as having a love for all things old, my Dad made it work. He bought a wood burning stove at one time and learned to cook a few things on it. Had he lived, I wouldn't doubt that he would have taught himself how to cook almost anything in and on that stove.
     Being a teenager, I dismissed a lot of what he tried to teach me, yet the lessons come back more and more these days as I get older. Some part of me was listening. His teachings are still ingrained in me: turn off the lights if you're not in the room; say Yes, Ma'am and No Sir (okay so I fail at that one more often than not, but I'm working on it); help out where you can, do the best you can. Make it work. Sorry, Dad, I never did learn to like fishing. I still get bored too easily and I'd rather talk someone's ear off or bury my nose in a book. But, despite the high sodium content, I do love S.O.S (otherwise known as Chipped Beef on Toast). I now long for the peace and tranquility of living out in the middle of nowhere. I want to go camping again. I am my Father's Daughter.

In Honor of Mothers

So ladies, how was your Mother's Day? I hope it was filled with joy and laughter, and good times. I know that isn't always the case. There are mothers who spent the day working or otherwise keeping busy because they couldn't be with their children, for whatever reason. Moms who sit praying for a child who is hospitalized or deployed or otherwise missing. My heart goes out to each of them. I pray that there are happier times ahead.
   As a daughter, I am blessed. I still have my mother in my life and she is fairly healthy for her age. She's stubborn, won't sit still for more than five minutes, and is a huge worry wort. She can try the patience of a saint, yet is kind and loving.
  Then there's my other Mom. She gave birth to my dear, sweet husband years ago. She is my Naomi and I am her Ruth. It is her love, teaching, guidance, and example, as well as her prayers, that shine a bright light on my walk. Like most mothers and daughters in law we haven't always seen eye to eye on everything, but there is always a connection. I don't tell either of these ladies enough how much I love and appreciate them.
   During times when I was away from home, God saw fit to place other mothers in my life to help guide me along the way. Two who come quickly to mind have both passed on from this life: Glenda Gardipee Williamsen and Frances Perry. Glenda was a deeply religious woman with a strong sense of family. Unable to have children of her own, she brought in others and taught us all well. And Mrs. Frances was a quiet, darling woman of strength. She and her husband Charles befriended my little family and became additional grandparents for our two boys, then a toddler and infant when we were stationed at Ft. Carson.  I miss both ladies very much.
    Today, we started off in the emergency room getting J's wrist stitched up once again and taken care of. This time however, I let The Hubby take him to the back room. I sat in the waiting room and talked --mostly listened--to first one then another mother who came in needing attention themselves. I was blessed to be part of their day and just listen and pray silently and give a little comfort, I hope. I pray that both received the care they needed today.  The rest of the day, I spent with my darling J and The Hubby. It's been a very good day, bumps and all. 
  Happy Mother's Day to all. Go hug your mother, call her, or remember her fondly. Then please go encourage another mother.     

Lessons Learned

 In the four weeks or so that I've been on a journey to health --and actually being serious about enough to try and change this time around -- I've learned a few things about myself.

• Water isn't all that bad. Granted, I rarely drink it "straight" unless its from a bottle.  I tend to doctor it up with lemons or lemon juice. I've also used other fruits at times.
•  I'm competitive and impatient, not always good things. This has also led me to realize that each person's journey to health is different. This is one instance where it's okay to take different roads and still end up (hopefully) at the same destination. I may not agree with some of the paths I've seen people on, but all I can do is express concern and move on. I suppose this can also be said of our spiritual path as well. Hear me out on this part, because I know what you're thinking and you're right. The bible tells us that there is one path to God, and it's a straight and narrow one. But, I'm realizing there are side roads that get to that point. You have to start somewhere. And we all know there are detours that sidetrack us but prayerfully we find our way back to the right path. But that's a blog post for another time.  As far as the competition goes, a journey to health is not a race. It's a lifetime of changes and tweaks. Same for the impatience. The weight didn't get piled on overnight, and it won't (shouldn't) come off overnight. What works for one may not  work for another.
• I eat semi clean and I'm okay with that. For now. I try to eat a whole foods diet, which horrifies some. I drink whole milk and I wish I could get it raw. I try to stay away from processed foods when I cook at home. But I'm at a point where fast food is going to be part of my life at the very least a few times a month due to scheduling, lack of planning, and the occasional craving.  I'm not quite ready to make my own bread or my own cheese. Will i ever be? Don't know, but I'm leaving the possibility open for now. The main point is, no matter what or where or when I eat, I need to be responsible enough to make good choices. Whether that be choosing more locally grown food, organic over conventional, or a simple cheeseburger versus a deep fried fish sandwich, it's up to me. It should always be that way. 
• The most surprising lesson learned? I like to exercise. Right now I walk twice a day most days. In the morning is my alone time. It gets me in a better mood and I can think better. Night time is family time. I enjoy the slower pace with my two men. It's a way to connect. I want to add more exercises but an injury prevents that at this time. It will happen though. I'm in this for the long haul.

The Family That Walks/Runs together

   At twilight, just before it gets too dark to see, a crazy giggle pierces the quiet. That would be my son. Hubby, Son and I are on our nightly walk and J is excited to be out of the house, having fun. For those who do not know J, he's twenty years old and has moderate to severe autism.
  We've been walking nightly together for several days now. I walk in the mornings alone; a brisk walk that I'm slowly trying to build up in time and distance. At night, the pace is varied but the route has been pretty much the same.
  J isn't a huge fan of exercise so when we first started walking each night, he was angry at the end. Jr, our tom cat, chose to become an outdoor cat that night. But J fairly quickly got used to the routine. He no longer looks longingly at the car when we step out onto the porch each evening. He's ready to get moving.
 J starts out a few steps behind us, because he likes the feeling of independence. Because we live in a fairly safe neighborhood, either Hubby or I walk backwards for a time (the other still faces forward since we're walking on the street) and encourage J to catch up, guiding him back to the grass when needed. All of this causes J to giggle, and he begins to run in his own awkward gait. Just for short bursts that catch him up to us. Lately, though, like last night, the goal of the run is to pass me and catch up with Dad. They are a team, running together and giggling. Sometimes I jog to catch up, too.
It must be a crazy sight sometimes. A man, who has been roped into the walk by his wife and tends to walk faster, yet turns and wagon wheels around his little family or marches backwards to us. A young man with the innocence of a child, hanging back, kicking sand and ant hills then running to catch up. And me. I go at a slightly slower pace at first, do backwards walking for a bit, do a few side steps, and jog for short bursts. The goal of the night time walk isn't to see how far I can go, it's just a time of family togetherness that gets us off of the laptops, burns a little excess energy, and gets us all into the fresh air.
I'm so thankful to God for this spring which has actually been springlike in temperature rather than extended summer so far. I'm also thankful for the bursitis that has sidelined me from other exercise right now. It seems a little strange to say that but since beginning this journey to health, I've been more active. It was the restlessness of not being able to do much else that spurred me to get the guys walking with me at night. Safe neighborhood or not, my eyesight isn't the greatest in the daytime and it can be worse at night, plus I feel safer. Most importantly, we all enjoy this time together.  I hope it continues.

Get Real, Hollywood!

I hate Hollywood. Absolutely detest it. Not so much the people themselves, because I don't hate anyone. It's the image of Hollywood. And I'm not so thrilled with the media and the health industry, either.
Day after day in movies, print, television, billboards, internet, and even in person, we are told that we must worship image and hate self. Oh, that's not true at all!  Want to bet? Quick, think of a healthy, happy woman. What did you think of? A thin, tall woman with not an ounce of fat on her, I'm guessing. Most actors and models are impossibly thin and they show off that figure in skin tight and/or flesh revealing clothing. There are very few overweight actors or models, especially women. When you do see one, what's the first thing a reporter or writer says about them? Plus size. Even doctors and the media tell you that in order to be healthy, you have to weigh a certain amount and not an ounce over.
There is a certain amount of truth to that statement. As in, weight does have an impact on the body. People like myself who are overweight have a higher likelihood of being diabetic or have high blood pressure. It's harder to climb stairs without huffing and puffing sometimes. But you know what? it's not the end all be all final story of health. I've seen overweight people who could run faster and out exercise their thinner buddies because they actually took care of themselves a little better.
Am I advocating that no one should try to lose weight? Not at all. After all, I'm right here on My Fitness Pal, writing this blog post while my head is screaming at me to go outside and walk while I have a chance instead of sitting here writing and avoiding making lunch. I'm drinking my water. Getting myself to move. Bottom line? I want to be healthy so I can take care of my family. And let's face it, I want to see less of me in the mirror.
So what's the point, chica? The point is we are bombarded daily with negative body images. Everyone tells women that in order to be sexy or even "pretty" you have to be skinny. In order to be somebody you have to be thin. In order for anyone to even look at you without pity or disgust you have to be slender. The lie that skinny automatically equals superior health is perpetuated hourly.
 Yes, we as a nation do need to eat healthier and slim down some. A few less value meals and a few hours spent walking or playing outside in the fresh air would do wonders. But also remember that its only part of the story. Genetics plays a big part in a person's size and shape as well as the love for KFC.  Thyroid can be a friend or foe as well. I've seen some who could eat fast food all day and never get off the couch but would still be super thin. Healthy? No. They have an amazing metabolism but are still slowly killing themselves by not eating healthfully and exercising.
 I've talked with a friend who can only see what society tells her: overweight equals fat and ugly. Her words. She considers her old self to be fat and ugly. She chose to lose weight in a way I don't consider to be healthy but hey, I'm not a person with a degree and I'm still fat so what do I know.  I know she only sees worth in herself because she's close to her goal of being super skinny and I honestly don't think she will stop there. Because it's been drummed into her that she was worthless as a fat person.
I've talked with a beautiful young lady who has very low self esteem. She can't figure out how to like herself at this point. She's trying to lose weight but she sees only the negative side of things at this point.
And I have me. For nearly twenty years I didn't like myself because I was no longer the thin girl I was as a teenager. I bought into the myth that you have to be skinny to be pretty, to be count as a person. Clothing makers help perpetuate that myth as well.  You have to look long and hard to find clothing that looks flattering and cute for women built bigger than a twig. At least, that's how I sometimes see things. It takes confidence and a sense of style to rock fashions these days. It can be done, but hello under garment industry: even us fuller figured gals like wearing pretty undies. Dont write us off with utilitarian bras. And simply coloring them something other than black or white to throw us a bone is not helping. How about some lacy, femininie fabrics along with the support?
For years we've been fed this baloney that skinny equals beauty. You know what? Anyone can look fabulous with enough make up and lighting and air brushing.  But a size zero body does not always equal healthy. Not in body or in mind. Too often I'm seeing young girls who are still growing refusing more than a few bites of food because they are afraid of gaining weight. Or adult women who think the key to happiness is eliminating any trace of fat in their diets.
Fat or thin, or any other way we describe ourselves, our goal first and foremost should be healthy.  Are you eating a well balanced diet that includes good fats (Yes, you need some good fats in your diet for optimum health!)? Are you getting up and walking or running or playing catch with your children? Being active in some sort of way? Are you a good person with a good attitude for life and compassion for others? If you can say yes to those then in my opinion you have a great start on being healthy.
Bottom line folks, weight and any other number people come up with to define us is just that. A number. Work to change those numbers if needed. I am. Just don't let your happiness and well being and self worth be dictated by numbers. Learn what is best for you. Do some research if need be. Be real. If need be, re learn how to eat. But please don't fall for the line that only skinny people have lives worth living. It's okay to not like something about yourself and want to change for the better. It's not okay to hate yourself. 

Gratituesday: Light It UP Blue 2013

It's that time of year again.

 

If you have never read my blog before, let me introduce you to J Man. 

Yep, that's him. The first picture is an older one from a few years ago, with his uncle Bobby. He adores my brother. The second is one of his quiet moments here at home. J is now twenty years old and he has severe autism. He is not verbal although he is almost never quiet. He is loud, loving, and happy on most occasions. The happier he is, the louder he gets sometimes. If, at the grocery store, you hear a  loud shriek and an infectious giggle, it could be J, letting everyone at the store know that he has arrived. If you see a twenty year old sitting in the aisle looking bored or even lying down, he's not staging a protest of anything but standing. He does not like to stand and wait around while mom and dad hem and haw over what to choose.

   Today I'm thankful to be his mother. (Well, I'm thankful to be his mother every day, even the ones that break my heart, but hopefully you know what I mean). I'm thankful for all the mothers and fathers who are in the trenches day after day, working with their kids, loving them, caring for them, and I'm thankful for the ones who end up making the most painful decision ever : to place their darling child in a school or institution because it's no longer wise to keep the child at home. It's not a decision made lightly and it's done with a lot of swinging pendulum emotions, I imagine. We haven't come to a decision like that yet, but we've seen it on the horizon of our journey a few times. 

    I'm also thankful today for Autism Speaks   and all of the businesses and families and individuals who who participate in Light It UP Blue and promote autism awareness. It's becoming more and more prevalent, with current stats at 1 child in 88 being diagnosed with autism, 1 in 54 for boys. Some put the current stats as 1 in 50 children being diagnosed on the spectrum. Whether because the numbers are growing due to whatever is causing it (I have my own ideas and there seems to be myriad theories out there) or as some would like to suggest, they're simply better at diagnosing it, those numbers are heading in the wrong direction. 

  So what is autism?  (Lifted straight from Autism Speaks: What is Autism) 

  Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. With the May 2013 publication of the new DSM-5 diagnostic manual, these autism subtypes will be merged into one umbrella diagnosis of ASD.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.
Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Increasing autism awareness is a key aspect of this work and one in which our families and volunteers play an invaluable role. Learn more …
  I tend to say "kids with autism" a lot when discussing it, but the "kids" that people see and tend to accept behaviors of once they know it's autism, grow up to be adults with autism. Mine is one of them. Yes, at times you will see a 20 year old in the throes of a full on melt down. Or you will see him happily waving his arms and singing in his own language. No, he's not on drugs other than medicines prescribed for his seizure disorder. No, he's not drunk or insane. He's either happy or upset or in some cases, having a type of seizure. If you can help, by all means do. If you can't, and simply are judging or in the way when something happens, please move along. Children and adults with autism are not zoo animals to be stared at, nor should they all be "locked up away from society so we will be safe" as one lady put it after a recent shooter was said to be on the autism spectrum. 
  Learn about autism. Ask questions. Wear blue today in honor of our kids and maybe Light it up Blue with the rest of us. Have a blue light on your porch or in your window. Say a prayer for the kids themselves and the parents and dedicated doctors, therapists and caregivers who work with them. And please, teach others.
  This post is share with Heavenly Homemakers for Gratituesday.
Join us for Gratituesday at Heavenly Homemakers!  You'll find many other bloggers that you may enjoy as well. Feel free to add your own post there or tell me in the comments here what you are thankful for. I always enjoy hearing from you..