Monday, March 8, 2010

A word from dinosaurs...

This is a series of books that my husband illustrates. If your kid likes sports and or dinos then these books are for you!

Follow this link to see the commercial here.

Wednesday, March 3, 2010

Fire alarms and other windmills.

People with autism frequently latch onto things to be afraid of. They either run from these things or lash out at them in an attempt to make them go away. It's often related to sensory issues like the fact that for a couple of years I couldn't blow dry my hair or use the blender - scary, loud noises were out. We had meltdowns in parking lots over loud engines and I once got cranky with a neighbor whose friend sat on his motorcycle in the driveway, revved the engine really loud for a long time and then peeled out just for funsies. By the end of it my son was screaming in the living room and it took a long time to get him to settle down. I don't expect the world to adjust to him but I wanted our neighbors to know that their motorcycle friends needed to act like they were in a residential neighborhood. Luckily, the wife was just as angry as I was and any future motorcycles did their funsies elsewhere.

About a year and a half ago my son decided that elevators are scary because there is a sign by the call button that says to not use it during a fire. He would approach the button, fingers in ears, push it then scurry back to me and go through his new script. (This is my son and me in a classic question/answer script) "There is no fire?" "No, no fire." "The elevator is working?" "Yes, it's working." "We don't use it in a fire?" "Nope." "The fire button is for firemen only?" "Yes, firemen only." We would then ride elevator, fingers in ears and jumping for safety as soon as the door opened.

I gotta be honest, we now take the stairs if it's less than 4 floors.

A couple of weeks ago my son expanded his fire on elevator fear to encompass all fire alarms. He became, almost overnight, afraid of seeing any fire alarm or sprinklers in the ceiling. This brought our options of places to take him to 1. our house 2. other peoples houses. All public buildings are required to have fire alarm systems in plain sight so that they can be used in an emergency. So any trip anywhere began with tension in the parking lot, fingers in the ears at the door and a touch of panic as soon as the fire system was found. (You better believe he looked for it!) He honestly felt unsafe and would turn to his script for comfort. (Same question/answer format) "There's no fire?" "No, no fire." "No one will pull the fire alarm?" "No one will pull the alarm." "Are we going home?" "No, we just got here and I need to shop." "But we have to go home!" "We will in a minute." "How many minutes?" "5" "How many seconds?" "A lot." "Is there a fire here?" "Gaaaaaahhh!!"

Needless to say this was no going to work. He was upset, I was having a hard time with patience and I couldn't convince him to settle down. My only hope was bribing him with soda when we were done if he stopped talking. So I asked a couple of friends and they recommended social stories, a tool that has worked wonders for us in the past. I didn't know exactly what to write though and I was a little afraid of making it worse. Luckily, I also put out an email to his autism teacher and she wrote and gave him the social story the next day. I haven't taken him to a store yet but I have high hopes because it's a good story and he has read it many times over.

I went ahead and put the story up as the photo for this post so that you can see exactly what a social story is. (I think that if you click on it you can see a bigger version) For my son it really seems to help cross from words into stuff he fully understands. He's a great reader but if you pair it with pictures then he seems to really see and understand better. We have used them for all kinds of things from potty training to proper behaviors during the holidays. They were an almost daily tool in his younger years but now we just break them out when needed. You'll notice the cool little pictures - those are part of a program that automatically pairs an icon with the words you type, making the story easier to illustrate. His teacher did a good and thorough job in my opinion and I totally owe her some chocolate or something!

Leave any questions in the comment section. I'll post later about how well this worked after we go to a store.

Friday, February 19, 2010

For today...a funny.

This never fails to crack me up! Maybe it's my silent cat who would be traumatized but never make a sound or my other cat who is an excellent candidate but would maim me. (There aren't enough duct tape covered sweat socks in world to make Max keep his teeth and back claws to himself!)

Ladies and gentlemen, I give you - Advanced Cat Yodeling.

For those who appreciate geeks and all geek humor, try on the longer but seriously chuckle worthy - An Engineers Guide to Cats.

Monday, February 15, 2010


Hubby and I took the kids sledding for the first time ever and it was a huge success! Our son is 10 and our daughter is 5, perfect for her and a good idea to at least try it with him. I've kept an eye on our son's ability to handle not having as much control over the speed that something moves and finally thought that he was ready.

Why wait and not just send him down a hill when he was younger? Well, as I said he used to panic if he felt out of control. If you pulled him in a wagon or anything like that he loved it but only if it wasn't too fast. (He reminded me of the scene in the movie Year One when the two heros ride in a cart pulled by oxen for the first time and they've got their arms in the air screaming that it's so fast - then Michael Cera barfs. That was my son.)

The thing about giving stuff a try is that children with autism form scripts and schedules for almost everything in their head. For a little while he had a meltdown in the same spot every time we went to two different stores! Aisle 5 = fit, women's sport wear = fit . And not even a real big one as time went by. It seemed more like it was his cue in a play so he would start up then realize he wasn't upset and trail off. Eventually he moved on. It took months to move on, but we were eventually able to grocery shop and go to Kohl's in peace.

So when deciding if you should try something or not with your child then consider whether or not it's worth it. Obviously, the older your child is the more skills they will have learned to control their upset and the more likely things will not go too badly. With younger kids who are still trying to figure out how to navigate real life be more careful and always have a plan B - one that you are willing to live with. Don't decide that your kid needs to go to the Super Bowl at age 4 because you won tickets and insist that they share this moment with Daddy if they can barely handle getting through a parking lot without screaming at the loud trucks. Learn to take a minute to see it from their point of view. They don't care if it's the Super Bowl, even if they echo your praises of it. It's loud, it's crowded, it's bright and it smells funny. Can your kid handle that? If you decide to try it then be prepared to miss the game. Maybe your child will do great but they might meltdown at the gate or at halftime. If that happens you will need a Plan B that you can live with. If you can't live with your Plan B, if missing the event would kill you then don't take them. Don't set yourself up for resentment and anger. Throwing your own temper tantrum never helps to calm theirs.

Plus, because of the script, your kid would never go near a stadium again or at least for years to come. Are you willing to risk that? Just take a moment to consider these things before you make big plans or try something new. New is scary and that's okay but your child might need to be older before they do something you think they would enjoy.

Those are the reasons that I waited and I'm glad we did. He went down on his own about 6 times before he was done. He had a great time and there were other kids on the hill that didn't know him who never thought a thing about him deciding to be done. He was just a 10 year old kid sledding with mom, dad and the sister, as normal and fun as could be. Super cool.

Wednesday, February 10, 2010

This post is a transfer from my other blog. It's general advice for parents who with newly diagnosed children.

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.

Monday, February 8, 2010

Parties and autism, they can go together!

Last night was super fun at a friend's Superbowl party! The friends were people that we knew from church but had never been to their house before. They had also invited work and neighborhood friends so there were many people that we did not know. So - new house, several screens going throughout including televisions upstairs showing various movies for the kids, excitement of a party and lots of new people - that's kindof a recipe for an autism meltdown, right?

But my son did really well and I want to share a couple of strategies that we used. First of all, we packed his main dinner. There was so much good food at this party that it boggled the mind but we knew that it would be the same as any party, he was only going to eat chips. My son is sensory defensive when it comes to food. That means that he feels disgust and literal fear when it comes to eating any food not on his approved list. It's not a part of our parenting that we're excited about since we decided, back in the early days when we forced the issue that he barfed on the table, that food was not an issue that we would push. There were too many battles that were more important and we wanted meal time to be family time, not screaming and barfing time. Little did we know that the food choice list he made at 2 would be the same list he stuck to at 10. So no meat, no veggies except for the spinach and cucumber I hide in his smoothies, no pasta, no rice, no lots of things. The approved list breaks down into two areas - the protein sources (important!) which are PB&J (well, almond butter since it digests easier even if it does cost a lot more money and it's served on a rice cake), plain oatmeal with unsweetened applesauce and raisins, soy yogurt and the rare (rare) bagel. The other category is the stuff he would like to live on but can't. This includes cereal (we try to offer gluten free as much as possible), crackers (ditto), chips of any kind (we try to usually get the baked ones) and a few fruits like bananas, apples, dried apricots and dried papaya. So the list is easily adjusted to be relatively healthy but when you've been serving that and nothing but that for 8 years it gets a little old. And candy, let's not forget candy. (But I ration that and it's not a problem area - thank goodness!)

Anyway, that's why packing a PB&J on rice cakes is important. Otherwise he would have made a meal of soda, cheese puffs and corn chips. We have had times when we were forgetful and he had meal like that but a sugared up and hungry kid is not a kid who is able to control himself very well. The stimming turns into a fit much faster and it really affects our ability to mentally "be" at the party. Why go to a party if you can't let the kids go play while the adults hang out? When they're little that's normal, but kids with autism (or any other kid) need to learn to go hang with the kids or (in my son's case) wander around nicely and find way to entertain themselves that only require tracking them down every once in awhile to make sure they're doing ok. But that is a skill that also comes with age if you make it a point to teach independence as your child is able.

Second, I walked him through the house when we first got there. It was early-ish in the party and not too many people so he could focus and I took him around so that he could ask questions and I could point out doors that he needed to not open. FYI for any of you who work with or know kids with autism, if you have a party put a sign on the doors you don't want opened. A lot of kids with autism are great readers and tend to be very black and white about rules. If you have a sign that says don't open then they most likely won't. My son started reading at 4 years old and I used to label all kinds of stuff to not touch or remember to do. Icons, little pictures of what you want or don't want, can be helpful too. You can even label the doors that go in and out of the house with little stop signs, I've seen that stop some kids from actually opening the door. (Now don't be dumb about it, a kid with issues like leaving a house unattended should not be left alone at a party unless the doors are locked and everyone there knows the child and how to protect them. I'm just saying that icons can really help and make even an experienced escaper pause long enough to notice them.)

After that he did his own thing. Every once in a while he came by me or I saw him go through the room. If I didn't for too long then I went and found him. Lots of high fives and telling him what a good job he was doing. I played with him once and gauged his anxiety levels as time passed. We only stayed two hours but we stayed until bed time and he had had a fit earlier in the day, so I was a very aware of how much control he had. But really, we moms can often do that from across the room!

Last, and this is one of the main points on this blog, I let him be him. He did really well with not stimming very much. We have tried to teach him that it's best if he saves it for home and as he gets older I really see him shake his body and do this mini-stim and then hold it together. As soon as we walk in the door at home he is running, yelping and hand flapping but he knows that it's a safe place to do that. No running into other people or interrupting conversations. Plus, if the goal is to help him to function then behaving in a socially acceptable manner as much as he is able is also important.

But that control ended at the halftime show. It was bed time and the evening had been exciting, add in cool music and light show and it was just too much joy to contain. We were in a living room with couches and chairs about 2 minutes into the show when he pops up and starts jumping and flapping in the middle of the room right in front of the tv. (Remember, half of the room didn't know him.) I asked him to settle down, he grinned, stared at the wall and said the most honest word ever spoken - "I can't. I have to do this."

Truth, my friends! Let's not forget this.

But I wanted to see the halftime show. I didn't want to usher him off to another room and I could tell that he wanted to see it too. So I looked over and saw a little alcove next to the tv where no one was sitting because they wouldn't see the screen. I spoke up to be heard and said that he needed to either sit with me or jump in the alcove. Off to the alcove he went where he danced and stimmed. A couple of times he came back to the middle and started asking for my order (a favorite game) and I reminded him to sit or go to the alcove. After about 5 minutes he came and sat with me, wrapped my arms tightly around him and watched the rest of the show. I never said a word to the people we didn't know and any who I saw looking at us I just smiled at. They knew that he was special, why should I miss The Who sing to explain specifics? My son had a great time and showed control which made him proud, I could see it all over his face. After the halftime show we went home and off to bed.

What a good party. : )

Friday, February 5, 2010

The new parenting kids with autism blog!

Well, here it is, folks! A new blog home for stories, advice and education regarding raising a child with autism and loving it.

In the next couple of weeks the posts will be a mix of new stuff and old posts from the WifeOfMonobot blog. (That will now be directly related to my writing for anyone interested in that.)

I will also be including fun stuff sometimes. I know that I have a more guy sense of humor than most women so I'll try to pick things that are universally funny. But I do think that laughing is extremely important! It's important in everyday life and instrumental in life with a special needs person. Learn to laugh at yourself, at the things your kid finds funny, at the situations you find yourself in and at life - it will make the sun shine just a bit on the cloudiest of days.

Also, I will share stories about what's going on in our life and how we are dealing with any challenges that pop up. As a matter of fact, our son is having a difficult time in school right now, specifically with testing, and I'll give updates on how that goes. It's information that I would have liked to see when we first got our diagnosis. How ordinary is it to have to work with teachers so that your kid can test better and get better grades? Totally ordinary - and I wanted to know that ordinary was coming so bad back then! So I want to give glimpses of future possibilities to those with young kids and for another person with older kids in school a story that helps them see, once again, that they are not alone in what they deal with.

So share the link and let me know what you think. I'm here to encourage and help!

- Rose