Autism Awareness

Autism awareness month is just around the corner. For this family though, that's pretty much every month. Every day we deal with it. We aren't alone in this.  The prevalence is 1 in 88 births. For males, the rate is higher. We still do not know what causes autism. Although there are a lot of theories out there, it's frustrating that an awful lot of money seems to be spent on "proving" what doesn't cause autism. Personally I think there are a few culprits out there, but I'm not a scientist so no one really cares what i believe on that point. 

Yes, I do believe that vaccines are part of the problem. I also believe that there are other factors involved. Furthermore, I believe there are things that we can do to help our children. Are children with autism ever totally "cured"?  I don't know, quite honestly. 

In the next several weeks, each Wednesday I would like to post about autism. Facts, websites, personal stories from parents/relatives/ those who work with children and adults with autism. Please feel free to contact me with your own stories: the good, the bad and the ugly. Do you use medications to help your child? Therapies? Alternative helps such as diet, essential oils? Please feel free to contact me via email (duckigrrl@gmail.com). Please put Autism in the subject line so I'll know.  Also, feel free to contact me on Facebook or leave comments here. I do ask that messages be respectful. Please be aware that I may share what you tell me, although I will not use names unless given permission to do so. 

Mama on a Mission: Caring for Adult Children with Autism

Here in Georgia, autism is in the news. Thanks to Ava's Law, kids with autism may just be covered by insurance. This is wonderful news because our children need so much care. ABA, speech therapy, occupational therapy, to name a few and none of this comes cheap. In fact, so many get dropped through the cracks of the system as it is right now because parents can't afford it and schools do little enough to help. Argue with me if you must but that's what I've seen of a few different school districts in a few different states including this one.
  As the mother of an adult with autism, though, I tend to wonder just how much Ava's Law would benefit my son. Will he be able to access speech and behavioral therapy? Would he be able to see a DAN! doctor? I have a lot to learn about this particular piece of legislature but no matter what I will support it fully. It is a struggle and a half to reach our kids sometimes, and bring them to the point of saying "mama" or following directions, and continuing on. 
  Looking further into the future, I'm dealing with the question of what happens to J if something happens to The Hubby and me, or if he just cannot live with us anymore because he is a danger to himself or us? It's not something I like to think about, but it's a possibility that I cannot ignore. The following is something I wrote on my facebook page yesterday:(This is straight from my page, no modifications, just what I wrote as I felt it)

 Warning: I'm on a rant. Don't have to agree with anything I say, don't have to read it. I just want to get all this written down and out in black and white . Do you know how hard it is to raise a special needs child? I mean, really know. Doctor's appointments, dealing with school IEPs and battling with teachers and aides who don't want to do their job, trying to figure out how to potty train a child who doesn't always understand. Then paying for pullups on your own because it's not covered elsewhere. I get it . He's mine. I love him. I adore him. He's my responsibilities and if I had my way I'd be able to provide for him without any help. Not in this country of high taxes. Won't. Ever. Happen. Then the child grows to be an adult and thoughts come up. What happens when I die? Who will take care of him then? Can I manage to keep him in my home even until I die? And of course while we're struggling with decisions like that, somebody or other pipes up and says "someday he will *have* to go to a home. Well meaning. I get it. But I have to say, Maybe. Maybe not. Very easy for someone to say when they don't have a special needs child to raise and care for and love.
So you start looking online. Where to start? Google. Uh huh. A list a mile and a half long that is 85% senior care, if not more than that. A very small handful of places that specifically state home for persons with autism. All NOWHERE NEAR HERE!!!!! Other facilities are listed just as a name and and address and phone number. No clue whether they are foster, residential, senior care, or a pizza joint. Not happening.
Step two: Google again and find an autism website that lists residential care. Click on that. Click again on the state. Still a bunch of pure, unadulterated bull, along with some businesses that may or may not be residential. Case in point? The only help in my area that I keep getting sent to, Hereby known as Bluebeard's Bluff Behavioral Business (Obviously fake but some readers would know it in a heartbeat and may try to defend them. Don't do it. I'm not in the mood.) Bluebeard's has *NOTHING* to do with residential care. They give out halfway good advice, listen with a third of an ear, and hand out scripts for meds that would stun a moose and keep him drooling for days. So. Not. Happening. There is one place that could help but with someone's work schedule, NOT possible. Respite? HA!!! Not in this area.
In this state your loved one has to be in a place halfway across the state from you, be placed in a mental institution (NOT acceptable), or you keep them with you until you die or they become too unmanageable to keep at home and we're back to square one. Having a special needs child is not for the weak of heart or the poor. But poor I am. As I said before, He's mine. I want to do what's best for him. There has to be something better than what this state is offering, cuz moving out of state is not an option unless it's the one to the right, and I'd so love that. Still looking for a house, especially in that area. Maybe, just maybe, they have better options. Until then though, I'm stuck in this area.
Am I ready to find a residential place for him? Nope. I think I am at times, but folks, I'm his mother. I trust no one , especially when it comes to strangers, with his care. I also know his behavior, and I've seen an aunt moved from home to home to home till no one can tell us where she is -- because of her behaviour. I will not have that happen to my son. I've seen headlines about parents and what they've done and went right along with everyone else with the how dare they's and the how could they's. I know how dare they and how could they. It's called desperation. This is NOT some post that someone will point to and say she needs him taken away blah blah blah. Just ranting to hear myself rant, folks. He's mine and trust me, I'd be the first to do something if I thought either of us was in danger. I just need some direction. And GA needs to get with the program and get its collective head out of the sand because autism is not going away.

    As you can see I had a lot to say.Mama got frustrated to say the least! But I have plans to contact my representatives about this soon, and I also have a dream. I would love to see residential/day facilities in each county or at least in tri-county areas that will benefit those with autism. I would love to see it privately funded if possible. If I ever become successful enough in my writing to the point that i could do it for at least one area, I will. If God wills it, I would love to see this help come about. I'm still in the thinking stages of what is needed, but I'd love your input as well, if you are the parent/caregiver of a child or adult child with autism. 

 

   

Gratituesday: Dr. Andrew Wakefield, Working for Children with Autism.

Dr. Andrew Wakefield on Youtube

This man here is who I am thankful for today on Gratituesday. If you have read this blog a time or two, you know my son J is autistic. During all the time that scientists and other doctors were trying to discredit Dr. Wakefield, he continued with his assertions. Seeing this video and being reminded of things I had believed for many years gives me hope that someone actually cares and wants to do something about it. Do I believe MMR is the only cause of autism? Not at all. I think there are many causes out there. MMR is just one that at the very least helped cause my son's autism. I would give my eyeteeth to be able to have my son seen and treated by Dr. Andrew Wakefield. I highly respect his studies and work. Thank you, Dr. Wakefield for your untiring work, as well as doctors who work hard to treat autism by treating the gut and allergies. 
Join us for Gratituesday at Heavenly Homemakers!

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.

Monday Morning Report

Good morning! It is indeed a Monday morning and started out at an hour than can only be described as "O Are You Kidding Me?" A.M. Yes ladies, the laziness (!!) of the holiday is over and we are back to "normal."
 The hubs has first shift at work this morning, and he was not the only one awake at that early hour. I heard not only the alarm but also the voice in the next room, singing happily and assuring me that he was not about to drift back off into dreamland any time too soon. No, dear J was on a mission and his mission was food! So, food he got. The furballs also thought early morning was a great feeding time so they got an early breakfast as well. J was presented with boiled eggs, the easiest thing I can think of without resorting to "Let him eat cake!" That will not happen on my watch. Things can get quite ugly when J is coming off of a sugar high. That tends to regress into meltdowns and we don't need those at any time, much less very early in the morning.
 J wasn't too thrilled with boiled eggs first thing in the morning. He held one aloft and proclaimed "food!" Yes son, boiled eggs are indeed food. Mommy's brain is mush at the moment despite being a morning person. Definition of morning: the sun must be up. Otherwise it is still night time to my brain.
 At any rate, I'm sure you didn't come here to read the breakfast menu. I hope you had a great Thanksgiving weekend. The thankfulness is still there, and I hope I remember to be thankful everyday, not just on or near a specified holiday. We were blessed to spend Thanksgiving with my mother and brother, and then a few days later, we had Thanksgiving with my mother in law, sister in law, and her husband's family. It was good to enjoy the time together.
  My sisters both have their Christmas trees up already. I haven't gotten that far yet. In fact, there are no decorations up yet, but within the next two weeks I hope to have that remedied. This week I need to be cleaning and organizing, maybe making a few cards. I like making my own Christmas cards, but I just haven't had the time or energy to do much of that, although I did make a few on Thanksgiving while my family napped. This year only a few people will get the handmade cards, and all others on my list will get a regular Christmas card. All will be sent with love, though. 
  What about you? Are you ready for the Christmas /holiday season? Have you begun shopping? Are you already done? Or do you make your gifts? I think a lot of ours will be handmade this year. I adore gifts that take some thought and time. 
  What does your week look like? Are you excited for the next few weeks, or are you ready to scream in horror?  I'm sort of in the middle, myself. There is so much that needs to get done and things I want to get done. The one thing I have a hold on is Christmas day itself. Christmas falls on a Sunday this year and my husband actually has the day off!!! I'm very excited about that, although truth be told I'm holding my breath, half expecting a schedule change at hubby's work. I pray that doesn't happen. 
  My mother wants a ham for Christmas dinner, so that makes the menu fairly easy. Cooking is also easier. She can handle that one, and if she decides to go to worship with my brother that day, the ham will be fine until they get home.  I will spend a day before hand cooking most of the side dishes and desserts at her house, and on Christmas day my husband, son and I will worship with the church at Statesboro and then go to my mom's house. We will have dinner and then the rest of the festivities, or the other way around, depending on the rest of the family. That's the plan, anyway. 
  I hope you have a wonderful day.

The Potty Wars, and Other Fine Whines

Ok, the title warned you. It's been one of those days. Some people drink to deal with a bad day. Some eat. I'm usually in that last category, but not tonight. Some throw things, curse, stomp their feet and carry on. Some deal with frustration by going on a cleaning frenzy...anyone who does that and lives near me, feel free.(the cleaning, not the throwing, cursing, etc). Just sayin.. ahem. I write.
  The economy has many of us scratching our heads, trying to figure out how to pay the bills and live day to day life. I won't bore you with the details of what's going on here at home, but let's just say it ain't easy. The frustration level is pretty high and although I'm praying and trying to trust God and my husband, I feel like I'm screaming in the middle of a hurricane. It gives me something to do but it doesn't accomplish much and no one is hearing my voice. God hears me, I know he does. But Little Miss Impatient needs to learn a little self control.
  I have five very hungry little vultures -er, cats who are my fur babies. Yes, I know part of the above problem is the number of those little darlings. I won't take them to a shelter that will end their lives in three days or less, and most no kill places aren't taking cats at the moment from what I can tell. Our county doesn't even have an animals shelter (whine whine whine) and most animal loving neighbors are just as poor as we are. Other than mine (most of whom are indeed looking for good homes in case you want a pet or know someone in the vicinity who wants a lap warmer/mouser combo) there are several homeless fur balls. I know because at least three of them know when its time to eat here. They come boldly into the yard, but not too close to the porch, because two or three of mine are quick to remind their guests just who gets to eat first and who truly belongs here. They get the cheap stuff here at home, and they are pretty happy about it. 
  While feeding the cats, J was setting me up for a nice surprise inside. I come and I smell The smell.  You know the one. It goes by many names which shall not be named here. I pray the present has not been left in his room. I check. Woohoo, not there! Is it in the bathroom? Yup! Great, right? Enh!  It's right in front of the toilet. And there is some in the tub. (Can you hear the Psycho music in the background? Shudder)! Yes sir, ladies and gents, its fun with autism once again. He has the first part of pottying fairly well in control ... with some accidents. The second part however..... ick. At least he's taking care of it in the bathroom and not other rooms at this point. I've tried teaching him how to go and where to go, every which way I can think of. I am grateful that this situation does not occur in other homes by my darling boy, but I would love ever so much if this particular thing would click in his brain so that he has that "Aha!" moment  and it didn't happen here. Ever. Again.  Please pray we get complete potty training soon. And if there is any advice, I'll gladly listen.
  I know it seems (to me anyway) that any time I mention autism and J, I only mention the bad side of things.  At the moment I'm listening to him in his room, bouncing on his mattress and singing. That's a cue that he's almost ready for sleep, but he doesn't really want to rest just yet. He's not been told he needs to go to bed, it's just his routine: supper, meds, bath, bed. He's content with it. He'd rather settle in at home where he is most comfortable. He doesn't like late nights, and to him, anything past 8:30 pm is too monstrously late to be away from home. He has only a few exceptions in which he is okay with not being home by then. J has popped into the living room a few times, to see what I'm doing, and checking to see if my shoes are off. They are. 
  In J's mind, shoes are needed only if you're going somewhere, and even then, not necessarily while in the car. He knows that shoes must be worn at church (although many times we've found his shoes in the hallway or under a pew instead of on his feet). He also understands by now that Grandma's need their shoes on. He isn't happy with that one, but he gets it. But I'm a mom. Moms don't need shoes on at home. It certainly can't be comfortable. If I don't take my shoes off in the house, he will! In his impatience to remove the offending items (wonder where that impatient streak comes from?) I have had to grab hold of anything stable lest he sweep me off my feet. Thankfully that doesn't happen often and he's mostly okay to wait until I sit before the shoes need to come off. Same for socks. Socks are only for use with shoes. I don't blame him in any of the sock and shoe business tho. I feel so much better with them off.
  I'm smiling now. Although he's a little early in his going to sleep, I think he's almost there. My whine fest is over for the evening. Time to settle in a bit myself. Get cozy under some covers and read or watch a movie. If you made it this far with me, thanks for listening (reading). Have a great night.
 
 

A Morning Cup of Tea: Jesus and Children

Good morning !  I hope you slept well last night. For the first time in a long while I slept through the night without a single wake up, and I am very thankful for it. I feel well rested and ready to meet the day. I'm bad, however, at planning productive things to do on Saturdays, so I guess I'll just play it by ear and see what happens.
  Today we are focusing on just three verses in chapter ten of Mark. Verses 13 through 16. Some people brought children to Jesus to touch and bless. The disciples tried to stop them, probably thinking that Jesus had more important matters to deal with to bother with little children.
 14. But when Jesus saw it, he was much displeased, and said unto them, Suffer the little children to come unto me, and forbid them not; for of such is the kingdom of God.
15. Verily I say unto you, Whosoever shall not receive the kingdom of God as a little child, he shall not enter therein.
16. And he took them up in his arms, put his hands upon them, and blessed them.
  As mothers of very young children, sometimes it can be a little discouraging to bring a baby or a toddler to worship. They cry, they fidget, they are loud, they ask questions, etc. If you add autism into the mix, it can be even more discouraging. The temptation to stay home until the child(ren) are older can be strong. I plead with you, don't give in to it. Just being there you may be an encouragement to others. And the children are learning: how to behave during worship, about Jesus and the love of God, and they are learning that the first day of the week has a special importance.  Yes, it is hard to think fully about why we take the memorial bread and fruit of the vine, and yes, it can be hard to get much out of the sermon when you're taking a little one to be changed or calmed or whatever. I've been there more times than I can count. Sometimes my son still has excessively fidgety moments and we deal with them. 
  Ladies of the congregation who don't have young children or children with autism,  please hear me: your help and encouragement is greatly needed. I have been in congregations where my son's exuberance was met with frowns or standoffishness (perceived) and at some points I stopped attending. While the responsibility is ultimately mine, no one called. No one checked to see why we weren't showing up. That is very discouraging to a young mother. 
  I have also been blessed to be part of congregations where there was (is) much encouragement. The congregation we worship with now has been such a blessing. The first Sunday we were there J was loud. It was a new place with new faces and although he understands there are certain rules we follow for church, he was dealing with the newness in his typical manner. I took him to a classroom where I could still hear and he could relax a bit. After service, I was a little shy because of how loud he'd been. I needn't have worried. Several of those precious women stopped to say hello and welcome us, and some looked directly at J and spoke with him. That meant so much to me. It still brings tears to my eyes to think of such love.
  We should encourage our young mothers and fathers. Be understanding when a child cries out. Jesus didn't forbid them to be near. He said let them come to me. 
 Our faith should be like that of a child: honest, forgiving easily, trusting fully that they will be taken care of and loved. They love others fairly easily too, and until taught differently see no difference in color of skin, dialect, or mannerism. The innocence of a child is a wonderful thing. Bring them to church. Continue teaching them. If you have no children at home, encourage the younger ones in the congregation. These are our future teachers, song leaders, preachers and preacher's wives. Our future missionaries. Bring them.