It's been more than a week since my last entry.  Lots of things have been happening.  For the most part Johnny has been doing well.  I worked a lot more than usual this past week and the week before and he handled it very well.  My other children, Lanny and Riley who babysat him handled it well too.  Hardly ever a complaint out of those two.  God love them.  :)  There were a few pretty big fits in there from Johnny though so I guess I'll start with our school-shoe-shopping adventure.  We talked about shoe shopping for a few days before we actually went and did it.  I told him all about how it is quiet in the shoe store and if he used any bad language everyone would be able to hear it and they would make us leave.  I asked him several times how we are expected to behave in places like that, what are we supposed to do when we get angry, which is STOP AND THINK ABOUT IT and make good decisions, calm down, all that good stuff.  When we walked in the door the lady asked if we needed to be sized.  I wanted to shout at her "NO JUST GO AWAY AND LEAVE US ALONE WE'RE GONNA TRY TO DO THIS AS QUICKLY AND PAINLESSLY AS POSSIBLE."  But of course I didn't.  After about 3 or 4 minutes in the shoe store the cursing began.  There were maybe 5 other people in the store so it wasn't over-crowded or anything.  I couldn't figure out what it was.  Could have been a number of other things but I can't figure it out.  Could have been that all the "foreplay" about going to the shoe store had stressed him out about it.  Who knows?  Several times I had to stop looking at shoes and speak to Johnny about his language and how people do NOT spit on the floor in stores.  He did pick out a pair of shoes he liked though and we found his size and all that good stuff.  You know, side note here, when Johnny was 3 he would only wear this one pair of Tonka sandals.  We lived in Florida so it didn't really matter what time of year it was, it was never SO cold that he was in any danger of freezing his toes off but we did go to Maryland to visit my family and he still would only wear the sandals.  I tricked him into wearing a pair of slipper socks with the sandals so his feet would be at least a LITTLE warmer.  It was January.  The first pair of shoes he would wear after the sandal phase was a pair of Thomas the Tank Engine tennis shoes that lit up when he walked.  I bought those shoes until the size of his foot was bigger than the average Thomas fan's shoe size and he wore that last, biggest pair until they literally fell apart.  Then he had no choice but to move on to a different style of shoe.  Thank goodness those days are gone.  So, back to the shoe store.  I grabbed the pair he liked and also a different pair in a half size bigger because they had the BOGO half off thing going on.  Things are getting heated with him and he is getting ballsier by the minute....spitting and cursing, etc.  The pair  he liked didn't have a box and when I put it on the counter the lady says "Oh let's get you a box for these" and she walks out from behind the counter.  If I could have reached her I would have grabbed her by her bun and yanked her back behind that counter with a quickness but I couldn't, so I settled for saying "NO NO NO NO NO we don't need a box, he's getting upset LET'S DO THIS."  Meanwhile Johnny is standing next to me saying "I'll say SHIT mommy, I'll talk about weenies.  Boobies are NOT private.  I'm PISSY."  Then as this nice lady is clearly working as fast as she can now because she GETS IT and her customers in the store can hear the little boy up front cursing at his mother LOUD AND CLEAR, he looks me straight in the face and starts to do this yell that I can't describe.  It was something like "AHHH AHHH AHHH AHHH AHHH!"  Just opening and closing his mouth like a little goldfish and letting out one hell of a noise.  This is when I really feel a big sign that says "My son has autism, please pick out your freakin shoes and stop staring" would come in handy.  Bless that poor clerk working that day.  She was just doing her job and trying to take care of us.  So I made it through that with only a minimal amount of sweat and not one iota of embarrassment because I'm getting REALLY good at not giving a poop about that.  He fought me all the way to the car.  In the car I turned to him just in time to get hit in the face by a big splatter of spit.  I wished so badly he could tell me WHY!!!!!  What set him off in the shoe store?  The smell, maybe?  Oh if my boy could answer one question I would want it to be WHY.  Actually a whole SERIES of WHY questions.  So we talked about it.  I kept my cool throughout the entire ordeal and I calmly told Johnny we would have to go home now, there would be no trip to Walmart (which was a very very necessary stop for us that day) and there would not be any McDonald's french fries either.  He quietly said, with his bottom lip quivering, "I'll be good" and that's when I almost lost it.  He had the saddest look on his face.  It's so so so hard when you don't know if he couldn't control himself, or is he confusing the excitement of getting new shoes with anger?  Not knowing is the worst part of autism.  And the WHY.  It's like a big cloud in your face and you can only see the tiniest bit of your child through the cloud but no matter how hard you wave it away it's still there and you just can't see clearly through it.  So I really talked to him like he was any other 8 year old boy and not one with autism.  And he got it.  I said I was very disappointed in the way he behaved and how we hadn't been going anywhere the past week because of how he behaved in Walmart the last time we went.  And that I hadn't left him at home when I went to the store all week to PUNISH him, it was because I don't know what he's going to do.  It really sounded ridiculous, me talking to him that way but I stayed calm and I think he really got the gist of what I was saying because all of a sudden he started crying HARD and said "I'LL BE GOOD MOMMY!  I'LL BE GOOD!"  So I said we would try Walmart.  And if he's good in Walmart he can have McDonald's fries.  Again, he said "I'll be good" and held up his hand to a passing telephone pole and squinted his eyes like he does at certain telephone poles and just acted like NOTHING had happened.   The trip to Walmart will forever be in my mind as the day I gave Johnny a second chance and he made me proud.  He was an angel in there and although I only had a couple things to get, we were in and out without incident.  We even went INSIDE Mcd's and sat down to have our lunch.  He was so good in the store that I had to text both of my sisters as soon as we got in the car to tell them about it.  I told Johnny repeatedly how proud I was of him and I knew he could do it and how happy he made me.  This all happened a week ago.  He has had some really great days lately and only a few fits.  There was a time when his teacher was counting as many as 30+ fits per day at school, so I'd say he's definitely improved quite a bit.  Johnny is learning to deal with things a little better and I am learning how to help him through his fits without a time-out or a threat.  We both continue to learn every day and I think we've both come A LONG WAY.  But there is still a LONG WAY to go too........

A Good Day

Well let's see....after a really long hard day of cleaning and rearranging to move my new dresser into my room yesterday, I got a good night of sound sleep. Yay me.  Johnny slept well too, which is always awesome.  I worked from 10am to 3pm today.  Called home a few times to check on things with Johnny.  This morning he had a small fit because he didn't want to eat the PB&J I left for him, he wanted to make his own.  Fine with me.  I think it's great if he wants to do it himself.  It probably makes him feel like he's got some control over it and that's good.  I made sure my daughter Riley knew that it's okay.  She and Lanny (16 yr old son) take turns getting up when I go to work and watching Johnny while the other sleeps in for a while.  My mother is always here to help supervise, although she can't walk, she is a huge help.  As are my children.  I really appreciate all of them so much.  So apparently that was the only problem today, about the sandwich.  This is SO good to hear, and it is happening more and more often lately.  Johnny has been taking Risperidone for one week now.  I know that it takes awhile for medicines to kick in but there have been some other changes too so it could be a combination of things or it could be the meds.  Who knows?  He is talking more, that is one of the changes.  He is using complete sentences.  He is answering questions.  He is offering conversation.  A few times this evening I noticed he isn't as angry when corrected.  He had a cardboard roll, like a paper towel roll and he was yelling through it and having a blast.  Then it was bathtime and I told him if he put it in the water it would fall apart, so don't get it wet.  Normally this would have sent him off the deep end.  He just looked at me and got into the tub and left it laying on the sink.  Little did I know he was thinking "Ha!  You just watch me."  I went and got a few chores done while he was in the bath, talked to my mom for a few minutes, then went to tell him it was time to get out.  By the way, he found a small, travel size shaving cream can and asked if he could spray it into the tub.  I gave it a shake and noticed it was just about empty, so I let him do it.  Is anybody else nauseated by the smell of that stuff?  Oh my I was coughing, hacking, felt like I couldn't breathe when I walked in there to get him out of the tub.  Guess I had forgotten how much I despised the smell of it.  See what happens when you don't have a man around and you only shave when it is ABSOLUTELY necessary?  :)  Like every 4 days or so.  Anyway there will be no more of that.  So when I walked in to wash his hair and all that business, I saw all these tiny pieces of brown floating in the tub.  Now it had been awhile since I had seen that, years, I'd say, and the last time was NOT pleasant.  What I had thought it was at first turned out to be wrong, thank goodness.  It was the cardboard roll.  REMNANTS of the cardboard roll.  Floating everywhere.  They were lodged in his hair, up in his curls.  What a mess.  (This story has a point, I promise).  I was a bit aggravated because I have a lot to do in the evenings and I didn't really have time to fish out all the pieces and after about 10 seconds of it my back was hurting.  So I said, totally expecting no reply at all, unless he wanted to shout the F word at me which he often does, just for effect, I said "Johnny I told you not to put that in the water, that it would fall apart if you did."  Then I cringed, expecting him to either splash me, smack me or cuss me out.  But he totally shocked me, saying something I have NEVER heard him say before.  He said "I know you did."  WHAT!  Where did that come from?  That is the same as saying "I was wrong and it's okay.  You were right.  I should have listened."  That is an example of how his language has changed in the last few days.  As well as his attitude.  It's very exciting.  
He also had a great time with me this evening, laying on the bed all tangled together in a weird hug, making up nonsense lines to nursery rhymes.  One Johnny said was "Hey diddle diddle the cat and the fiddle the cow jumped over the trampoline." This sent him into wild fits of laughter, which I soon joined in. He also asked me to scratch his back and said "Do it slowly, please."  Not slow, soft, easy, nice, or any other word he would usually use instead of SLOWLY.  (Or just screaming NO!!! and I have to figure out what I'm doing wrong).  He said "Do it slowly, please."  So a grammatically correct complete sentence?  And saying please without being prompted to?  And on top of all that, a great day?  I love it.  

I am glad to share this with anyone taking the time to read it.  It gives me the chance to sit down and reflect on his behaviors AND I can go back and check what has happened from day to day as well, if I ever need to.  I am hoping his recent change to Risperidone is helping his behavior and so far can only think positively about it.  I also hope I'm not jinxing myself by actually saying the words "good day" because plenty of times it has turned out to be something temporary. Let's hope for the best though.  :) 

Risperidone and Behavior Update

Johnny has been taking the Risperidone for 5 days, 0.25 mls in the morning and again in the evening.  I have noticed an improvement in his behavior but I'm not sure it isn't coincidence.  There are still outbursts and fits over things that seem little to you and I but are obviously huge to him, but not nearly as often.  There have been some other changes that are making things less stressful for him as well so not sure yet if it is the medicine or not.  One of the changes is that the "long paper" we had has run out.  He would get so frustrated in drawing his streets, telephone poles and street lights if they weren't absolutely perfect and it caused several fits of anger.  Most of the time he was very happy to draw on this 30 foot long paper stretched from one end of the house to the other.  But sometimes there were those difficult moments.
If you have experience with Risperidone and would like to share your comments, please feel free to do so.  I am aware of the potential side effects and have taken all that into account.  I know that just about any drug has side effects that may or may not affect the person taking them.  
I've come across some amazing information on making behavior charts and am excited to share that in the next few days.  So many helpful hints!  Once I have had the chance to start on mine I will do an entry on making them.  I can't wait to get on it.  Tomorrow I'll be off work so I should be able to buy the materials necessary for it.  Stay tuned....
Enjoy the rest of the weekend.  :)

The photo above is of me, Johnny and my son Lanny at the Special Olympics this past spring.

Give second chances, and third, and fourth.....

Well I learned a valuable lesson last night in taking my Johnny to the carnival.  He has never been to one, mostly because of his behavior and more recently his DIFFICULT behavior in public.  Before it was a tough job to keep track of him and I was always unsure of how he would act in a crowded place such as a carnival.  With his behavior lately in grocery stores, etc.  I have no idea what possessed me to give it a shot but I am SO glad I did.  The plan was for me, my 16 year old son Lanny, my 11 year old daughter Riley and my 8 year old Johnny to go.  When Lanny told me he didn't want to go I was devastated.   I was thinking I couldn't do it without him there in case I needed his help.  I have had to lead Johnny out of the grocery store several times recently, usually holding his arms crossed in front of him and one hand over his mouth to muffle the profanities.  On all occasions I have left without buying anything, leaving the cart just sitting in the store.  Sigh. I have learned that most of this behavior is caused by his autism and sensitivities to various things in the store.  We now avoid the grocery store and will do that for about another week and try again.  So I was picturing myself and my wonderful little girl trying to handle this child and get him all the way through the crowd and to the car on our own should there be a problem.  Believe me it is NOT easy when he's having a breakdown.  I didn't want to make my 16 year old go if he didn't want to, since he has stayed home to watch Johnny all week while I worked and Riley was at volleyball camp.  I thought he had earned a night with his friends.  Turns out, we didn't have one problem with Johnny.  We talked about it several times, what he could expect to see there, what we would do, how there is no cursing allowed, and no spitting or hitting or kicking allowed.  I cannot believe how well-behaved he was.  Well, unless you count him spitting off the top of the ferris wheel.  :(  But that was just one time!  He had a blast.  He rode every ride that didn't look terrifying.  Some of them he even rode twice.  On the ferris wheel he was amazed that he could see ALL the telephone poles and street lights.  I'm sure seeing them from such a high angle was fascinating to him.  The look on his face was priceless and will be forever etched in my memory.  He handled the carnival just as any other 8 year old boy would, if you don't count the flapping.  :)

My point I want you to take from this entry is to give your child chances to prove they CAN handle something before you automatically assume they can't.  I am SO guilty of not doing this.  I need to remember that each trip to the grocery store is a new day and it won't ALWAYS end the way other trips have ended.  My plan is to ease him back into the store.  Go in for 1 or 2 items, then gradually increase to more as I see he is ready again.  Also I plan to "practice" going to the grocery store when we are at home.  We'll make a game of it and go over appropriate behaviors for when we are in public.  Baby steps.  We'll get back to that place again.  But not until I allow him the chance to show me he's ready.  If you are limiting your child's outings due to what has happened previously I recommend you just keep trying.
And just a little FYI, if your child is unpredictable as Johnny is, and you decide you want him to try the ferris wheel, check it out first and make sure there is SOMETHING securing them in their seat before you even get in line.  You know, like that bar that goes across the lap or a chain that goes over the lap and hooks on the side?  There was nothing at all holding him in that seat except me and his sister and we each had a limb or a sleeve or the hem of his shorts.  And I still felt if he wanted to he could leap right out of it.
Johnny quote of the day:  "BOOBIES ARE NOT INAPPROPRIATE."    I'm sure a lot of men would agree with you, son.       

Easy and Delicious Recipes

I know I promised in the beginning I would be posting some recipes.  Sorry I got side-tracked with the drama but Autism is like that.   I plan to share some of my favorite recipes and I hope you guys try them!!

http://www.tablespoon.com/recipes/honey-mustard-drummies-recipe/1/ 

http://www.cooks.com/rec/view/0,1950,157167-230205,00.html 

 http://www.bettycrocker.com/recipes/barbecue-pork-chops/ac2e0742-663a-485c-a938-e9feb96786c8?WT.dcsvid=NDI4NDI5Mjc3NgS2&rvrin=C41C5A4C-28A4-4F53-B5CA-0680DEEA47AD&WT.mc_id=Newsletter_BQ_06_22_2011

http://www.justapinch.com/recipe/ralph-creamer/chicken-bitetes-tepura-style/quick-easy-chicken?utm_source=spop&utm_medium=email&utm_campaign=Coupon%20of%20the%20Week%20%2860%29&utm_content=

http://allrecipes.com/Recipe/Chocolate-Fudge-Cookies/Detail.aspx

For those of you who love sinfully delicious chocolatey treats, take a look at justapinch.com.  omg good stuff right there.

ENJOY!  Let me know if you try any of the recipes.  I LOVE to talk food.  :o)

Risperidone and New Behavior Strategies

Last week my sister Anita and I took Johnny to Children's National Medical Center for a psychiatric evaluation.  Anita has always been there to support me at 'all things Johnny,' whether it be an IEP meeting, an important doctor appointment, or any awards events at school, joining me for classroom birthday cupcakes for my kids, etc.  She is my second brain and asks all the right questions and actually remembers the answers.  (I have to write everything down or I forget it).  She is a blessing, as are all the members of my family in some way or another.  We saw a no-nonsense doctor who first told me that the original medication I had Johnny on back in September is the main drug used for treatment of issues related to Autism.  He asked why the dosage was never increased before switching him to a different drug.  I had heard of some side effects associated with that drug (Risperidone/Risperdal) and immediately had him taken off of it.  The one side effect in particular was the chance that he may develop breasts.  We've tried 4 others since then, none having much of an effect on his behavior.  He suggested I have him take it again and give it a chance.   All medications have SOME type of side effects and the one I was concerned with had a very low percentage of occurrence.   Today we had our monthly meeting with our psychiatrist but he has moved to another office so we saw a new doctor.  What a difference.  Although he stuttered and stammered, he was able to make things clear to me about different medications.  Honestly, Johnny had become so much trouble in the doctor's office that I found myself nodding to whatever I was told even if I didn't understand it, just to get out of there before Johnny broke a window or got the doctor in a choke hold or something.  (Nah he's not THAT bad).  We will be starting back on Risperidone tomorrow.  He will be taking it in the morning and around 6pm as well.  The evening dosage will be increased after 5-6 days and then another 5-6 days after that the morning dosage will increase as well.  I have heard from a few reliable sources that this is the only drug approved by the FDA that is for treatment of Autistic behaviors.  This new doctor also informed me of a lot of things I didn't know about.  And the funniest thing is, Johnny was practically an angel in the office.  He had one incident where he told Dr. Isaacs he was going to hit him, which he wouldn't actually do but wow, nice to meet YOU too.   Other than that, he was perfect and we were in the very same office as we've always been in, just a different doctor.  Odd isn't it?  
My new method I'm trying is instead of telling Johnny NO when he hits, spits, or curses I refrain from saying anything negative.  If he curses I say "Nice language, please" or "Nice words only please."  He may say one more bad word, but it stops after that.  Side note:  Johnny thinks DAMAGE is a bad word.  Sometimes he'll say this to me, trying to get my attention.  I have to try not to laugh.  If he spits I say "Spitting isn't nice" instead of saying "Stop spitting."  And if he tries to hit me I say "Hitting hurts me."  These things are all working!  Believe me, little things like this just make my whole week.  If you have a child with behavior issues you know what I mean.  I plan to do some more work on the new Behavior-Goal-Reward chart tomorrow.  I think this is going to be so helpful to him and I want to have it perfected before I introduce it to him because we all know consistency is key with children like him, so introducing it and then tweaking it wouldn't be a good idea.
If any readers ever have a question about anything if I can answer it I'd be happy to.  As I've said I'm not an expert and clearly you can see my own problems I'm still addressing but I have been through many phases with Johnny and you never know if I may have an idea to help.  Believe it or not, there was a time for about 6 months when Johnny was 4, that he actually walked around school with his privates sticking out over the top of the waistband of his pants.  He always had a shirt long enough to cover it but it was still there.  I fixed that situation by putting him in overalls every single day.  Eventually he stopped doing it.   He still has a little bit of that going on, but it is the top of his underwear now and not the waistband of his pants.  At least it's covered!  So you can see, I've been through some craziness so if you have a question or would like a suggestion just try me.  That's what this blog is all about, sharing experiences, what has worked and what hasn't.
Stay tuned for some yummy recipes coming up soon.  I'm working on that right now.

Siblings of a child with Autism

Oh boy what can I say here?  My children are AMAZING with Johnny.  They help me in so many ways.  Whether I am having trouble getting Johnny under control, or I know he won't calm down until I leave the room, or if I've simply had enough, they are right there to help.   Sometimes they show up out of nowhere, kind of like the butler in Mr. Deeds would just seem to materialize and be in the room all of a sudden.   I am so thankful for them.  I tried a new strategy with Johnny today and couldn't wait to tell the kids about it so we can all be on the same page with him.  They always do their best with him and it's usually exactly what I would do myself.  They babysit him while I work and if they didn't make it a joint effort and try their very best it would be disastrous and I wouldn't be able to work.  (I only work summers for now.   For the first few weeks of  summer Johnny is home all day every day but for all of July he has been either in camp or summer school, and that leaves only a few weeks of him being home all day before school starts back up again.  I work 4 days a week 10-3 at a produce stand that is nearby.  The owner is very understanding and always willing to rearrange the work schedule when I have an appointment.  I'm also very thankful for that and for Amber, another employee who is always willing to switch to accommodate me).  My kids are always concerned about what the "right" thing to do is.   If they ever aren't sure they call me if I'm not home or they come get me if I'm not right there.  What more can I ask for there?


My 11-year-old daughter, Riley, wrote a book when she was 9 titled "Life With An Autistic Brother."  In the first few days after it was printed, she made enough money from sales to buy herself a new bike.  Her book really opens your eyes to what siblings deal with.  Her positive attitude speaks volumes about her.  She is patient and understanding and is considering a career working with special needs children when she grows up.  She does an excellent job.  I know she will be great at it.  All of my children are awesome.  I'm a lucky mom.  :)


It's so important to let your children know how much you appreciate them.  Mine have made plenty of sacrifices as I'm sure many siblings like them have.  While they still find things to complain about, I can't think of one time when any of them have protested about things they miss out on because of their little brother's disability.  They are a blessing to me and to Johnny as well.