Want a different response? Ask a different question!

As a psychology major I know the phrase "The definition of insanity is doing the same thing over and over and expecting different results." Everyday I ask Robbie " How was your day?"  Every day I get the same response. " My day was good." Additional questions vary, What was your favorite part of the day? What was your least favorite part of the day? Last night was a quiet night at the dinner table. Lexi had a "make-up" soccer game- and explaining to her that there would be no eye shadow or lipstick involved was quite hysterical. Dad took Lexi to her game- something he had been looking forward to. The boys and I were on our own at home. After getting the boys a large helping of macaroni and cheese I came to sit as well. "Robbie, How was your day?" It comes immediately from my mouth, even though I know I will get the same response. " My day was good." What did you do today? was my next question. There was a pause and a response. "I showed Miss Kim my pirate costume. She wanted to see. Was in the backpack." He was wearing the pirate costume at this point- which he had gotten the night before and was moderately obsessed with.  I felt tears well up in my eyes. This was a milestone. Robbie has never answered that type of a question. I'm not sure he really has ever answered a direct question with more than a one word answer. I said "Robbie, I'm going to cry." He asked if I was sad. I told him how happy I was to hear him talk. I loved his words and I was so incredibly proud of him. He smiled, jumped, flapped and said "eeeeeeeeeeeeeeeeeeee." That's my boy!!

Its hard to explain how important this is. It's the type of interactions most of us take for granted because it comes easily. Of course everyone knows that dialogue between people, communication, is important. For Robbie, this opens up a entire world. I know I will not get a response every time I ask, but again- all I could think of was the Dr. Seuss book I have read countless times to all 3 of my munchkins.

Oh, the Places You'll Go! by Dr. Seuss. Congratulations! Today is your day.

You're off to Great Places! You're off and away! You have brains in your head.

You have feet in your shoes. You can steer yourself any direction you choose. 

Excuse me. Hey Kids........................................

"Excuse me. Hey kids. The water goes in the top and the food comes out the bottom." Then a bit of mumbling about the name of the machine which does this - the Flint Lockwood Diatonic Super Mutating Dynamic Food Replicator, or FLDSMDFR for short. (it is a tough word)
This is how Robbie may begin a social interaction. The exciting part- is he is really trying to engage in social interaction with other kids. The tough part - is...... see above. The "kids" have no idea what he is talking about. I have been trying to explain to Robbie he needs to tell the kids what movie he is scripting from(Cloudy with a Chance of Meatballs) because there is a good chance they will not know- at least not right away. I have no idea if he really heard or processed my advice. He was still in the middle of scripting from the movie.
Lexi on the other hand is my social 6 year old. She loves making friends and playing with kids in the neighborhood. She is quick to tell them her brother has Autism and most seem to take it in stride. It is likely they have no idea what autism means. Robbie gets excited when there are kids in our backyard or when they come to the door. Yet he keeps his distance. I think it is because they are close to his age and 6 and 7 year old girls tend to be quite loud. He still tends to attempt interaction with younger kids. They give him more of a chance.


I was talking to a cousin of my husbands last weekend. She causally mentioned that she had not seen us at a family event- a basketball game between cousins who are a few years older than Robbie. I paused for a second. That type of an event never crossed my mind to attend. We just don't go to those types of things. Partly because we are all busy with our own lives but as I peeled back the layers of the last few years the real answer is- they were too hard. The noise, the crowds, the unfamiliar environment- and who knows where the bathrooms are when you need them immediately. I explained that we just don't go to many events as a family. We tend to split up or skip all together. Honestly- many times making excuses as to why. More recently , coming clean- it's just too hard. Luckily , life has gotten "easier." It is a combination of Robbie maturing and us understanding his limitations and how to manage them.
Sometimes I feel like yelling at the top of my lungs- "My son has Autism!!! And he is doing Great!!!"   ( And yes Mom and Dad-I will admit- the tattoo of the puzzle piece on my wrist was my passage aggressive way of doing just that.)  Truthfully- Robbie is doing really well- for Robbie. We all have things to work on.  For Robbie some are- how to tie his shoes and how to engage in appropriate social interaction. For Lexi some are how to tie her shoes and how to balance schoolwork and playtime. For Timmy some are how to say a few more words and give "Hi Fives." Mine are way too long to list.  ;)


Have you ever felt like you were a little bit different? Like you had something unique to offer the world, if you could just get people to see it. Then you know exactly how it felt to be me. - Flint Lockwood- Cloudy with a Chance of Meatballs

The good, the bad and the.........OH NO, he didn't..........

Let's just dive into.... OH NO, he didn't. We are at a really good friends pool. A place we have gone many, many times. There are many kids in and out of the pool as neighbors stop by. The age range is Timmy at 1 to Robbie at age 8, with many 3, 4 and 5 year olds sprinkled in between. Suddenly we hear- "everyone out of the pool."  Most of the kids responded quickly, with Robbie lagging behind. "There is poop in the pool."  My first thought is, it must be one of the little kids.  Rob's first question is " Robbie, did you poop in the pool?"  "Yes I did, ( jump, flap) EEEeeeeeeeeeeeeeeeeeeeeeeee." (jump, flap.) Smiling the whole time.  Besides feeling embarrassed and mildly horrified, I felt sad. My 8 year old was the one who pooped in the pool and had a different reaction to it than I would have expected.  I think he was embarrassed, really embarrassed. However he did not know how to express this emotion. He continued to smile, a very awkward smile. Rob brought him into the house to clean up as best he could. ( Of course the only items that did not make it into our bag were Robbie's spare clothes- things I never travel without, out of habit.)  Shortly after we gathered up our things and I explained to Robbie that it was time to go. Lexi of course threw a fit, asking why and whining that we didn't stay long enough. Robbie kept trying to get my attention by putting his face directly in front of mine and smiling this awkward smile, saying, "yes, lets go home." He was looking for a similar response from me, to reassure him all was alright in the world. Later that evening he threw up in the bathroom. He obviously did not feel well and I assume got distracted by his happy place- water.  I realized he was embarrassed and didn't really know how to react. That being said, I guess the response was "normal."  How do you react when embarrassed?
Some of the other things that have been going on are as expected. Home instructional ABA, while effective at getting Robbie to do a task, still has set backs. Recently he was asked what his sister's name is. He could not answer. She had been out of the house at a cousins for the night- that may have affected his lack of recall, but honestly we see regression every summer vacation, every winter and spring break.  Additionally we had a horrible trip to the dentist. Screaming, crying, almost to the point of vomiting. The decision that was made is for a " check up" annually and then hospital operating room visits every 5 years, or if there are problems, for dental care.  While leaving the dentist Robbie did say "Thank you!" with way too much volume and enthusiasm.
The good is some of the new ABA therapy seems very specific to Robbie. For example he will be asked to identify a letter from our ABC board. Write the letter. A few letters will create a word.  Read the word. Do the action. For instance JUMP. Perfect and engaging for the sensory seeking, hard to focus side of our beautiful little boy. We also have had a lot of swim time. Pool and beach. Some pump it up jump time and backyard swing time. All the input he needs.
 As school approaches I will say a little prayer for quick catch up, lots of learning and possibly making a real friend or two. You just never know where our son will land. We just do our best to enjoy the ride through childhood!!

The trouble with...........scissors

Do not be fooled by the title of this blog. Robbie is very good with scissors. His fine and gross motor skills have developed well and he can cut things easily. The trouble is....... you never know what he will decide to cut. His hair, his t-shirts, his sister's favorite beaded bracelet, 10- ok 15- ice pops in an hour, I-pad charger cords, or a small model sailing ship from the vacation house my parents so graciously paid for ( Sorry Gama, he just had to cut all the sails off and put them in a pile.)  This is unlike his sister, who has only dared to cut the hair of a Barbie doll, after her older cousin telling her it was a good idea. ( A right of passage,  haven't we all done that?) For this reason, we hide scissors, although being as resourceful as he is- he always seems to find a pair.


Another difference between my 3rd grader with Autism and my neurotypical 1st grader is the back to school shopping list. In Robbie's class this year they are going to work on personal hygiene. Along with pencils, notebooks and folders they have added deodorant, hair brush and toothbrush. Robbie has always been pretty good about brushing his teeth and hair. These are things we have put into his picture schedule.
On another topic language has definitely blossomed over the past year. Robbie has been articulating his thoughts much more regularly. At times you can tell he is frustrated because the words don't always come out as easily as he'd like, but it is improving. For example the other morning Robbie asked where the white car is? (Rob has a white truck that we had swapped to use his brother's larger black truck for our vacation travels.) I asked if he was referring to Dad's white truck. He responded by saying- "It's like Power On." This is what the truck says when you start it up. The phrase "it's like" has been used frequently. He'll say a robot and the "it's like beep bop beep" and make robotic movements. It's a great way to communicate.
Lastly, the same issues arise with the stimming and lack of attention span. We went to a new karate session last weekend- yes trying it again. The instructor is a new ABA therapist that comes to our home 2 days a week to work with Robbie. He is running a special needs class in the fall and asked us to come by a few weeks before that begin to make sure Robbie is comfortable with the environment.  I had a hard time explaining to Robbie where we were going. I didn't want to confuse him with pictures of karate in fear that he'd assume we were going to the old class where he was over whelmed. I mentioned "Mr. Mike" who is his behaviorist. His immediate response was "No Mr. Mike, No Miss Yvette" ( his other behaviorist).  Nothing personal here- he simply did not want to "work" on a Saturday. I completely understood.  Still, we managed to get him in the car after switching from crocs to sneakers and sneakers to crocs- at least twice. ( The indecision is another challenge that seems to occur when he feels overwhelmed.) The ride to karate was uneventful as Lexi was also with us. Once we got to the location Robbie did not want to go in. We sat at a table outside and I gave him the doritos and capri sun I had stashed in my purse as a  bribe/ reward. Mr. Mike came out and asked the kids to some check it out. Lexi went right in- no fear. Robbie took his time but did follow her lead. Lexi followed Mr. Mike's direction, mimicking the appropriate kicks and punches. The look of shear concentration on her face. Robbie jumped, flapped, spun around and said "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE" a million times. He was really excited but also could not focus on the task at hand. I believe his own reflection in the mirror was most distracting as he was checking himself out. Still Mr. Mike plowed through and did get him to do a few kicks. The question is for $80 a month do we continue?  It's hard to know if Robbie truly enjoyed it or was too overwhelmed.I am not sure. Time will tell.

Amazing and so very scary

We are at a crossroad. It is so awesome and so scary at the same time. My 8 year old son wants to make friends. He wants social interaction. For a child like Robbie- this is HUGE! This is also very scary. Robbie is socially akward with most kids his own age. His speech can sound a bit robotic and then there is the stimming. At a party I did try to help Robbie engage with another special needs child. Robbie showed him the toys he had been playing with. The little boy didn't say anything and walked off. Robbie said "I guess he didn't want them" and moved on. Bravo Robbie, for making the connection that he did not want to play and not getting upset by it. A party guest, who had not seen Robbie in a long time mentioned how much he has grown and developed. He spoke of  the first time he met Robbie. Robbie was standing in front of a large fish tank staring. Not really at the fish, just staring and hard to engage. Now a few years later he will make eye contact and has the ability to engage in back and forth dialogue. It feels like it took forever and it feels like time flew by.


Later the same night we ran into another family with a special needs boy who Robbie used to play with. They were happy to see each other and Robbie gave him a big hug. They played on a swing set and ran around for a bit. It was awesome. Now both situations were with other special needs children, those who are "safe." We recently took a trip to the library. Robbie wanted to go. Movies are the first thing he goes for and books are second. He was his usually stimmy self. Jumping, flapping, hand wringing , saying "EEEEEEEEEEEEEEEEEEEEEEEEEEE." There were 2 other children around his age. They stared. They looked slightly horrified. I was sad to see that.  So happy that Robbie had asked to go to the library. Many times we opt to avoid social situations with Robbie. I know it is time to get out there more often. I know many times there will be stares and whispers. I also know you really don't know until you try. Robbie is ready. I am ready. So to all our friends and neighbors- get ready to hear "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE."

Happy Tears and the Stimmmm

I have made a few unsuccessful attempts of getting video clips of Robbie while he is in "super stimm mode." The reason I am unsuccessful is the minute he notices that I have a camera in hand- he immediately poses and says "cheese." The next statement is " let me see the picture." Interesting that he can stop the stimming behavior so quickly but also can't seem to control it as well. The stimming has been out of control for the past week or so. Jumping, hand flapping, hand wringing, eyes twitching, repeating "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE"
all simultaneously.  Additionally we are once again engaged in episodes of The Backyardigans and scripting episode after episode, again and again. At home we have done a lot of deep breathing, "hands down", swinging and spinning in his indoor swing, swinging outside and swimming.
The swimming brings me to an incident at the lake. I watched as Robbie swam towards a group of older kids. They were splashing each other and swimming around in the water. Robbie sidled up to them and watched for a minute. Then, he began to splash the kids as well. Sure that is would end in disaster I asked Rob to keep a close eye on him as I had the baby crawling deeper, deeper and deeper into the water- not realizing he can not yet swim. ( He thinks he is a big kid like his siblings, but he is just hitting 1 years old.)  Rob decided to swim out to where Robbie was and after exchanging a few words came back over toward the beach.  I gave the thumbs up and got the same in return.  After talking to a few people at the beach Rob returned to explain that he had explained Robbie has Autism to the older kids and reminded Robbie he needed to introduce himself when he met new people. Rob had also thanked the parents of the kids for their response.  The kids were welcoming. Three young teens, 2 boys and a girl, were kind. They included Robbie as they splashed at each other. Robbie was engaged and played in a way I have rarely, if ever seen , especially in a group of strangers. I wanted to cry- happy tears - because this was such a huge step. Social interaction is an enormous hurdle for him.  We have tried social skills classes and play dates with classmates- some of which were mildly successful. To see him happy, engaged and playing with other kids.........................happy tears!!!!!!

Pity party for one

I love my son. Here is where it gets hard. Sometimes I  feel resentful. I feel sad. I feel angry. Never at him. Honestly- never at him. I may get really, really frustrated with him, but I never feel resentful towards him. Sometimes I feel resentful towards you. Those who have not dealt with autism and don't really understand it. Those who try to understand it- but just don't. Because , how could you? You don't know. We all worry about our children. I worry about all three. I worry the most, about Robbie.
My poor brother felt my wrath late last night. He asked how we handle certain situations and gave a suggestion regarding something else to try. I think I may have said- a little too harshly- yes we have tried that. The truth is- I can say with almost 100% accuracy- we've tried it- but I do welcome new ideas and suggestions. Unfortunately for him, I was in the middle of a pity party for one. A few weeks ago an acquaintance was explaining how he had a friend who has a child on the spectrum and this friend may have a good neurologist referral- or other good information. I honestly always welcome any advice, referrals, information- etc. When he sent me the information a few days later- I felt a combination of self righteousness and sadness. The referrals were doctors or places we've already used.  Once you hear the words- Autism spectrum disorder- or probably any disorder, as a parent you dive in head first. You read every book, article etc. You reach out to those who are dealing with it. You join 15 different online support groups- because really , who has time to go to one in person. You try diets. You try different doctors, different therapies.  Then you pause.  You cry. You reassess what has worked and what has not. You reengage and try it all over again. You get mad. You get mad at strangers who look at you with pity.  You get mad at friends and relatives who love you and try their best to give advice. The truth is- no one knows what to say or do. The truth is we all have our life stressors, issues, problems, baggage etc. The truth is everyone's "stuff" is just as important and difficult. So to all my friends and family- thank you for all your words of wisdom and hugs of support. Sometimes I need to pause, take a breathe and remember how lucky I am.  And to my brother, sister, my husband and all those close to me- thank you for listening. xo