Back soon...

Sorry about the break in posts - I got really depressed about Haiti and very involved in raising funds for my daughter's old orphanage. So, after a week or so off, I'm planning on getting back to my regular schedule tomorrow of three posts a week.

One thought that I have had is maybe separating things into an autism blog and a writing blog. There are two different distinct groups of readers that visit now and it might be easier for people to know what to expect if I focus on one topic. If I do this then I'll probably set up the new site tomorrow and put the details here.

Thanks for all of your positive feedback. A lot of it has been through email or facebook and I am always excited to know what you guys are thinking. As always, feel free to share my blog with anyone that you think will be interested!

A note on autism, adoption and not underestimating your child.

Three years ago we adopted our daughter from Haiti. It took us 18 months to bring her home and in that time I visited her twice for a week each time. When we first made the decision to adopt we were still in the first year or so of finding out about our son's autism. The first foster/adoption certification class was taken in that first year but the whole process from first class to our daughter being home was closer to two and a half years. So by the time she came home our son was five and still had very little language.

Some might have thought that we were crazy since autistic kids have so many issues with change. I do know of some people who would not want another child when the first requires so much of them and maybe that is the best choice for them. Myself, I was an only child and hated it so I had no intention of doing that to my son, autistic or not.

Here's the part about not underestimating your child - they understand more than you think and quite often can deal with more than you think. Case in point, our son accepted it as fact when we showed him a picture and said that he had a new sister but she lived in Haiti and loved her from day one. If anyone asked him if he had siblings he would answer yes and if we were at our house he would point to her picture. When she came home he ran and jumped and generally stimmed in his excitement that she was home. Playing with our son was the first thing that made her really relax. There are five years between them and he has been a gentle and loving brother from day one. Honestly, no mother could ever as for more in a sibling relationship, fights are rare and playing together is a daily occurrence. His language skills picked up quickly as she learned English and she is always encouraging him to try new things.

Since then our son has dealt with the death of a grandmother and beloved teacher, my cancer and done well in 40% mainstream schooling. He is amazing and if told the basics of a situation in simple terms can deal with these huge life issues better than he can someone turning a television of without warning him first.

So don't underestimate your child and don't try to hide life from them. Be smart about it and be more than age appropriate but don't shelter too hard. One of your goals as a parent is to enable them to live in the real world. Shit happens. Teach them how to deal just as you would any other child with being a good example and answering questions. They might never thank you for it but it is more than ample reward to watch them excel.

___________________________

Our daughter's old orphanage, a wonderful place where there are only two children per nanny, is in Port Au Prince and sustained damage in the earthquake. If you are interested, John, the man who runs the place with his wife Beth, is blogging as often as possible since all of us are on the edge of our seats with worry. Luckily, no one in the orphanage was injured and all of the children are safe! But it is estimated that there is at least $30-50,000 worth of damage and money is needed. To see the blog click here or donate money, please click on this link for Heartline Ministries. Thanks!

Today's questions

From Finn -

Question: Mom, if I touch your uvula will you throw up?

Answer: Yes, yes I will.

Action: Immediate chasing after me with pointed finger.

From Nandi -

Question: Since you saved ten dollars on lunch, can I get ballet classes?

Answer: No honey, ballet classes are a little bit more money than that but we'll try to get them for you soon.

Action: Half second of sadness followed by a big smile and a complete change of subject. Gotta love the age of five!

Notes to moms of kids with autism. Pt. 3

The importance of mentoring.

I woke up this morning absolutely fried. There is a list of errands to be run and a meeting in less that an hour, plus a sick parent to visit. Needless to say, I didn't get any of it done yet. Sometimes you need to decide that just because writing and errands is done in the morning while kids are in school doesn't mean that it always has to be that way. I needed to veg this morning and for a long time nothing made me feel better. My head was just in a bad place and I was pretty determined that slime mold has more redeemable qualities than I do.

Here's what pulled me out of my funk at the last minute. I found a post that included a letter written by one of the creators of Ren & Stimpy, an old favorite of mine. The link is here. Apparently, a 14 year old who had done his homework and knew a lot about animation and the business just from reading on the internet (something that not everyone does before approaching pros), sent John a letter with some questions. In response, John sent him not only answers but a book and very specific advice and methods for developing the skills needed to make it in animation. That got me to thinking...

First of all, it reminded me of my interactions with Marjorie M Liu and Lynn Viehl, two professional writers who have given me their time, encouragement and advice. It has done me a world of good and will always be something that I remember and hope to emulate when I eventually succeed and have people ask me questions.

Also, it made me think about teaching and mentoring in life as a whole. As a friend to a wonderful 18 year old at my church there is definitely a mentoring aspect to our relationship even if it is unofficial. This thrills me because when I was in high school and college I had a few mentors, both official and unofficial, myself. It is important and so helpful when you are entering a new career, phase in your life or going through a unique event to talk with someone who has gone before you or who is smart enough to be a help. It's not that you can't figure stuff out on your own, but having a friend give you some insider tips or help make sense of issues that you struggle with is invaluable.

This made me think about the autism series that I have been working on. First of all, any parent is their child's first and most important mentor. We are there to guide, teach and gradually get them to a point where they can figure it out on their own. The more time you invest the better mentor you can be, even if your child has autism and most of the mentoring is nontraditional or nonverbal.

The thing about parenting is that it almost always puts parents, especially mothers since we are so social, into unofficial mentor relationships. We ask older mothers whose kids turned out well what their secret is and we talk about how to potty train or where to get cheap diapers. Friendship and mentoring relationships are a blended thing in most of life and when parenting, especially little ones, it's very apparent.

But what about the mom in your group whose four year old is not potty trained? She has little to say, right? Maybe that mom doesn't even hang with the other parents, which would be a shame but happens. Would an average mom have any advice for a parent whose child runs into the street with a smile on their face at age nine? Who does?

Parents of other children with autism do!

It is important for parents of children with autism to find their mentoring system. It's also important to have a general support system, people who love you and your kid just the way you are, but right now I mean mentors. For me, my son's teachers in his autism unit as of kindergarden were mentors. They could answer a lot of questions, give advice and point me in the direction of web sites or organizations where I could find what I needed. Also, I have a friend who is a special needs teacher and another who used to be a social worker - both have been invaluable in their support and wisdom. My struggles were not new to them and they had helped others get through them. I don't know what I would have done without them.

But these people did not just show up at my door. Hubby and I left the church that we had attended for years, met and married at, because they did not accept our son. We were asked if we were disciplining enough, pulled out of service because he wouldn't sit in story time and could not find a single place where we felt he was loved. But the day after our first visit to our current church, the head of the children's sunday school called and asked me if our son had enjoyed himself and if there was anything else that they could do to "make him feel loved". Well, I teared up and talked for an hour about our struggles and how much the call meant to me. Needless to say the decision to make it our new church home was an easy one.

Now some of you are not church going people so you will need to find other avenues for mentoring and support. First of all, talk to whatever organizations you are getting services through and ask for listings of support groups or respite providers. Go online and google your city name and autism services or support. The more local the group the easier it is to form good solid friendships because you live near each other and the groups tend to be smaller. Or start volunteering in your child's classroom, you should be anyway just to be involved and to learn from the teacher different strategies for dealing with teaching your child. When volunteering you generally get to form relationships with the teacher and are quite often able to meet other moms and some of them have older kids who also have special needs.

So get out there and make friends! There is no reason to do this alone. And remember that when your kid is older than it is your turn to be the mentor. Don't keep your insight to yourself, use it and then share it. Failure stories can be as helpful as success stories, so just share what you do and let people take what they will from it.

A note to all who already are the mentor moms: Thanks! And remember, when you are the one sharing your advice that dealing with autism is tough and we all do it different so don't be offended if people don't use what you know. What works can be as relative as what's normal! Just appreciate everyone's journey the same way that you want others to appreciate yours.

Notes to moms of kids with autism. Pt 2

Figuring out what you're dealing with.

Autism is a neurological disorder that makes functioning, especially in society difficult. It's a spectrum disease, which means that you can be in a room with five kids that have ASD (autism spectrum disorder - anyone on the spectrum from high functioning to low) and everyone will look a bit different. This is why diagnosis is made based on observation and questions to the parents than by any diagnostic test. Especially since most kids are diagnosed between two and three, there are behavioral markers and developmental goals missed that are symptoms of autism and not a blood test or anything like that.

Let me boil it down the way that I do when talking to my neuro-typical five year old about autism: Autism just means that your brain works a little different. It still works and there is nothing really wrong or broken, we just need to talk and play with an autistic person in a way that they can understand.

Medically speaking, there has been some great research in the last five years about the mechanics of autism. We still don't know the cause exactly, though most believe that it is a combination of factors both genetic and environmental, but we are understanding more and more how their brains work. For instance, we now know that the two halves of their brains do not communicate very well. Actually, most of the different centers of the brain, like speech and sensory areas, don't communicate well. The neuro-pathways are either not connected or convoluted. What would be a single lane road in my brain is a twisted up mountain highway where the info can drop off of the side in my son's brain. For my son this was really obvious because he could echo speech but not talk intentionally more than a couple of words until around five. The echo part of his brain was hooked up but his attempts at intentional speech were gibberish. If I remember correctly he was five before he told me he loved me without prompting.

Another fact that scans have found is that the memory center of the brain is larger than normal. (Some believe that most autistics have a photographic memory, a theory that I agree with.) This is why patterns and scripting (more on that later) are so helpful. They can memorize that someone saying "Hello" means that their response should be "Hello", but it will be awhile before they are the ones initiating. This is also a reason for many tantrums because, to use an example from my life, they have a memory of what the grocery store looks like. So when that store takes out the video store to put in a pharmacy, that is a big and unexpected change. Change is scary. Scared autistic kids are unhappy kids and they will let you know it.

When your child goes out in the world it can be upsetting for them, mostly because of sensory issues. (And if you aren't paying attention and making adjustments at home then the house can be scary, too.) The equalizer on their senses don't integrate very well. It's like someone else turning the volume and brightness up and down all around you and your skin can be reeeeally sensitive or not feel much unless it's a more harsh stimulation. The rules can change from day to day and depending on mood. An already anxious child is more sensitive and has a lower tolerance to things that upset them, a happy kid will go with the flow a little easier. It's a lot to handle and takes a lot of bravery on your child's behalf. Realizing that the world is different on even these basic levels can help you to be more patient and creative in helping them to function.

Okay, so I've given you a few basics on understanding the nature of autism. I didn't give sources because it's really just what I know after years of reading books and article and talking to doctors and wonderful teachers. I actually had to work hard to be concise because what I have gleaned and what I could find with a day of research could fill a book. (I'm enjoying writing this enough that I think one day it will!)

That brings me to the final and maybe most important point - research with extreme prejudice. Everyone views autism a different way, as an enemy, or a sickness. People feel angry, sad, resigned or relieved to have a reason for the behaviors. So it stands to reason that these feelings and points of view will effect how and what you research. Some people are militant in their search for a cure, they read everything and can quote statistics and medical findings until they lose their voices. Some do nothing and assume that whatever services their schools offer will take care of it. But I urge a slightly different approach. First of all, accept your child for who they are and love them. Don't be put off by their behavior, they can't help it, but instead of trying to find the magic bullet to make it stop - try to find the tools to help them manage a condition that they will live with for the rest of their lives.

There is a book that was written by a man with autism. He can't talk but he can write and at the beginning of the book there is an explanation of how it was verified by several specialists that he was indeed the author. It was an odd book as one would expect from an person with autism, but there were two things that stood out to me and that I always remember. One was an explanation of self stimulating behaviors like jumping and hand flapping. He said that it was how he "found the lost pieces of himself". After I read that I lost any last traces of embarrassment over my son's stimming. In a store I will say, "Let's save that for at home" and he will take it down a notch. But at home he is free to do as he pleases because no one should have to lose pieces of themselves to make others happy.

The second thing that I remember is that he recounts the many healers and men of faith that his mother took him to in order to heal him. He describes in his detached way, how hard his mother prayed and how hard she worked to make him like everyone else. Eventually, he was able to communicate to her that it made him sad. He wrote that he didn't want to be the cause of her upset, he just was who he was.

With that in mind, do the research. Find out what autism is and look for advice on therapies and services in you area. Some people move to get better help for their child and I think that is great, we would if we needed to but we are extremely blessed where we are. When looking at therapies start with the big main ones, like ABA and a gluten free/casein free diet. For us, we can't feed our son GF/CF because he won't eat enough but we are able to be mostly dairy free and low on gluten. Too much and he gets disorganized, but we have to get enough calorie into him so he can grow. Regarding ABA, we opted to not do it. My husband and I decided early on that we wanted our son to have a childhood and not an endless progression of therapy sessions. I don't care how fun therapy is, it is not the same as family time in my opinion.

After you have studied the main therapies and made sure that your school is giving proper support (more on that later), then you can start looking to more alternative therapies if you would like. But be warned, every therapy has a miracle case or two and those cases are shouted from the rooftops. It's great that they worked for those people and if you want to try it and it will not harm your child then do it - but remember that there is not one cure for everybody. "Recovery" is a dream that many chase but very few find. If you want to chase it then just make sure that you don't sacrifice yourself, your family, every last penny of your finances or your relationship to the child that you are trying so hard to help in order to do it.

Remember, love and accept. Give them tools and help them grow, but be a loving parent because they are still really just kids.

Taking a day off!

While I do have another post in my head for my fellow moms, I am totally brain fried from my intensive writing hotel stay. S0 I'm taking the day off to clean up the much neglected house, hang with the kids and rest my brain.

I'll be back tomorrow though, so don't forget to check back!

Notes to moms of kids with autism. Pt 1

It's going to be okay.

For this first post, let me talk to those moms who have just found out that their kid has autism or those who are still struggling with the idea even after some time has passed. There are so many things that I want to tell you, so many things that you will learn along the way. But first, as a mom with a high functioning but 'classic' kid with autism, let me give you a hug. Not a polite one but five seconds or more with a small rock to it. You need comforting by someone that's been there and I'm giving it to you. Enjoy. Cry if you want to, crying is part of the parent package.

Now, take a deep breath and settle yourself a little. Got get some tea. Because you need to pay a little attention and absorb a few truths. And you have to stop crying sometime.

1. It will be okay. I swear to you that no matter what level your child functions at it is still possible for things to be okay. They will be okay because of truth number two.

2. You can always make a new normal. Normal is a relative term. If you are one of those people who has spent your life concerned with what others think then this will be a harder concept for you. But if you go to any home, behind closed doors when it's just the family, you'll see that every family is different and yours is no exception. Whatever it is that makes day to day work for you and yours is your normal and you have a right to it. Never let anyone make you feel bad about your normal.

3. Try not to let the reactions of others dictate your actions and emotions. Are people shaking their heads at your four year old in a diaper? Do old ladies tell you that in their day kids were better behaved? Having a meltdown in a store with lots of people watching in apparent disgust or trying to get the attention of a security guard? Well, learn to put on metaphorical blinders. Focus on what your child needs and controlling your emotions enough to give it to them. Who cares if strangers watch or judge, it's not their job and they are rude for doing it. And if one of them is rude enough to actually say something out loud then you give them a little piece of your inner mama bear. Protect your child from the scorn of others with a succinct snippet, like "I'm sorry if he's disturbing you. He has autism and I'm trying to help him calm down." Or just ignore them. I do and it feels great.

4. Cry after the tantrum is done. Children with autism have a hard time with the emotions of others. The first and sometimes only thing that they understand is smile means good and frown means bad. If you are upset and crying then it'll be harder for them to calm down. Fake it till you make it is your mantra with tantrums. Act calm, talk calm, know your child enough to understand what they need if you can. But saving the tears for later will help things to move faster. I'm not perfect at this, no one is. If I've been screamed at for 20 minutes or more I cry, hands down, and it never helps. So trade with your husband if you have to (that's a great system that we use - only one of us gets yelled at at a time so the other can calm down), but try to be the calm that you want for your child. When it's over and they are watching TV like nothing happened then you go in the other room and sob. Don't forget to bring tissue.

5. Never be embarrassed by your child. This is related to numbers 2 and 3 but is very difficult for some adults to do. But let me tell you this, your child knows more than you think. They are just like any other child in that their view of themselves, especially when younger, comes primarily from how you view them. Ask yourself this: Do you cringe and try to hide your child as soon as the jumping, running and hand flapping starts or do you let it go if it's unobtrusive to those around you? Do you talk to your autistic child daily or help others try to talk with them - or do you figure that they have nothing to say and put your energy elsewhere? Remember, if your child were asthmatic you wouldn't be ashamed at their use of an inhaler to function. So don't be ashamed when your child uses self regulatory behaviors to function. It's part of his normal. Also, you would facilitate a child's use of an inhaler by buying and storing it and you should be a facilitator to your child with autism so that they participate in the social world around them as much as they are able.

5a. If you are embarrassed of your child's autism then their siblings will be to. Teach your other children by example that autism is part of your normal and that there is nothing wrong with it. Praise your autistic child's advances and personality just as much as your neuro-typical child's. Everyone is different and that's okay, it's a commonly known fact but one that is bigger and more meaningful in your family. Live it and you will teach it.

-----------------------------------------------------------------------------------------------------------------

I'll post more later. I want to cover some advice on marriage and school. But if you are visiting this blog and have friends with children who are autistic, please send them the link. It's my hope that people will find it helpful.

One more thing, for any who are new, here's a little about who I am - I'm almost 35 and have been married for 13 years this February. My son is 10 and has autism, he's biological. My daughter is 5 and neuro-typical, she is adopted from Haiti. We are a happy and loving family with a wacky sense of humor, so I just want to share some of the things that have worked for us. : )

Alone in a hotel...

Maybe I was a bit hasty and naive when I came up with my plan for today. See, since Hubby broke that leg in October and I had missed a lot of writing time because of it, we decided that I could/should spend a night or two in a hotel alone.

That's right, three days and two nights with no kids, errands or chores - just me and a keyboard. Sounds like writing heaven, right? I mean, I had visions of all night writing sessions and looking adorably disheveled as I ordered more pizza to be delivered, barely looking up to see that the sun had gone down as I finished my revisions on Elemental.

Honestly, I liked that Hubby was willing to do it but had absolutely no intention of taking him up on it. Money is tight right now and I had put the money elsewhere. But then this afternoon two things happened that changed my mind. One, I had an epiphany about my main character. Even though the book centers on her I couldn't quite pin her down. But there I was fixing my hair and boom... Anything that happened after that was just bidding time until I could sit and write. My brain was full and churning with words, everything was coming together - I just knew it.

Second, I went to the blog for Marjorie M Liu and she said that she was going to be offline for the week while she wrote a book. Well, that could only mean that the universe was sending me a sign. Ignore the money and go write because you will succeed and then there will be more money anyway!

So here I am, thanks to Priceline.com and William Shatner. What I had not anticipated was the insane mental block that locked on as soon as I entered the hotel. All of that world building and plot untangling turned into thoughts of failure, fear and regret. I have sat here for almost an hour and not written word one in my story. It makes the negative emotions louder and I have to admit that I can't even remember half of what I had figured out this morning.

Well, the way that I see it these are the moments that show you who you are in life. I took a huge leap of faith here. Money is spent, Hubby sacrificed time with guy friends for watching kids, family time is on hold and I have done a thing that a non-writer would probably not understand. I feel exposed and challenged, humbled. So what am I going to do with that?

This TV here has cable and it's tempting to turn it on. Just watch one show to calm down. But will I really turn it off? We don't have cable at home and it would be really easy to have one show turn into four simply for the novelty. I can sit and read work done by other authors which would kill lots of time and make me feel justified for not writing since I can't write as well as that person. Yet.

Or I can use the advice that I have been collecting over the months and take a pick axe to my mental block. Whether I take it down stone by stone or blow it to bits with one good trick, I could put my energy into forward progress. No matter how slow it is, it would be the right direction and would keep guilt off of my list of negative emotions.

But attacking my self doubt is work. Creativity is work. Wallowing however, is easy. Complacency is simple and effortless.

I'm alone in a hotel and all I want to do is relax. Right?