Why I love christmas...........one of the many reasons

"I love snow! I love lights! I love December!" yells Robbie as we leave a basketball game, that Dad was coaching, tonight. All I can see is the pure joy on his face. Of course he did a little spin as he said it and a flap or two, but all I could see was an eight year boy who is happy. He loves this time of year- as most children do. For him - it is magical. This morning he was literally kneeling and praying to a picture of Santa Claus asking the he come down the chimney this year. When I mentioned this to Gama- she joked that we need to start going to church. (Church is a whole different subject to be discussed at a later time.) I mentioned it to a doctor I call on at a lunch appointment today. He seemed a bit alarmed. He does not know Robbie or the innocence of autism. The true beauty of it is- he did not ask for presents. He just wanted to see Santa. He did not yell "I love all the gifts I get in December." This week he came home with gifts for the family that he had purchased from the dollar store on an annual class field trip. He was so excited when he came home. He wanted to show me right away. He began to open one of the gifts and I explained he had to wait until Christmas because those were gifts for the family. He got upset and ran to his room. I looked in his binder where every day we get a note about his day. His teacher said he had done such great job picking out gifts for his family. he wrapped each one perfectly. ( He wraps my gifts too- a benefit of  the obsessive compulsive behaviors that sometimes accompanies autism.)  I looked the receipt that came with my change. Baby bottle,  Elsa- from Frozen-  ornament, picture frame, etc, Each gift carefully thought out. I felt guilty. He wanted to share the gifts he had purchased.
Tonight I turned on the television when we arrived home. Polar express is on. He has loved this movie for years. As I  write this post he is - as Robbie does- talking to the tv- happy to see Santa.  "Look Santa- I love Christmas!" He simply loves the spirit of the season. That is worth praying for :)

Family........love

After Robbie was diagnosed I remember seeing a news program- 20/20 or something similar. The story showcased was about families with multiple children- all on the spectrum. I remember 2 families clearly. One had 4 boys who where all considered moderate to severe. They lived in a small Midwestern town. They traveled to and from school on the disabled bus- or the short bus as it sometimes referred as. The boys would come home from school and all sit and have a snack before additional therapies or homework was begun. I remember seeing one of the boys, at his kitchen counter eating a plate of doritos and ranch dressing. I remember thinking, he should be on a gluten free / casein free diet- as  I had Robbie on at the time. He was older than Robbie and " that was clearly the answer"-  I thought at the time.  The other family had young children- 3 or 4 - all on the spectrum. They were mild to moderate. A lot of behavior issues. Lexi was 1 at that time.  It made me a little nervous , however they were all boys and knowing that autism affects more boys than girls , I took a breathe. And watched. And to be honest, cried , a lot.
My mother had recommended a book for me to read as well. This book was written by an autism mom- with 5 kids. Only 1 was on the spectrum. Their story was beautiful and difficult. Autism affects every part of your life- and everyone in your life as well. Every decision needs to made with extra care.  Looking back though- those news broadcasts scared me. How could I bring more children into the world with the possibility of autism? How could I care for more children with special needs?
Fast forward 5 years. Robbie is 8- and still considered moderate on the spectrum- but communicating. Recently he told me about the candy corn he drew in class and had in his backpack to show me later. He went to an art class after school. He had his behaviorist with him- but he did a great job and was happy. Lexi is 6- neurotypical, smart, really sweet and an amazing sister. Timmy- my little gift- is 16 months- on track it seems, and a perfect addition to this crazy family. I know how wonderful it is for Robbie to have siblings. I wish I had not be so scared and possibly brave enough to have had more children. A pack. To keep each other company and drive each other crazy- as family can do. Family is wonderful. They will be here for each other when Dad and I are gone. Hopefully sharing memories of how annoying we were when they were teenagers and how wonderful their childhood was. One can dream.........
Moral is- don't let fear make decsions for you. Life is short, scary and beautiful.

A Parenting question...............I think?

So here is the question. When do you cut the cord?  Not the cord between Robbie and I- seriously- it may never happen. The cord between siblings. The bond between Robbie and Lexi is................. amazing. As I attempt to write this post Robbie has come down from watching a movie with Lexi. He is reciting some movie line I do not recognize. She comes down and ushers him back up to get to sleep- asking - Lexi's room or Robbie's room , because she knows he will not fall asleep by himself and I have asked for 10 minutes to write.   It is a beautiful relationship- that of siblings.   Love you Suzie Q and Dummy Piggy Robbie- private joke- only my siblings will fully understand. And yes my brother, husband and son are all named Rob.
Robbie has made so much progress regarding speech and communication. Our biggest challenge has been socialization- friendship. He seems ready and interested -sometimes- when it is on his terms. If you want to do what he is doing- or play along side him- he is game- otherwise- ............not so much. We attempted a play date with a friend of mine, who has a special needs child, and lives in the community. My hope was/is that Robbie will make a friend locally. Someone he is happy to see at community events. Maybe someone he wants to build Legos with. To be fair, it was the first time in a long while the kids had been around each other. However,  Robbie had been prepped. I had shown him this boys picture and we had talked about the up coming play date. His ABA therapist had also mentioned the upcoming event.  Robbie is a creature of habit- as many of us are. The change was too much. Having someone else in his space, with his things, making demands of him was too much.  Honestly, it made me sad. My hopes were high that finding a friend would work out.  I was also a little embarrassed by his behavior. Something I haven't felt in a long time- even when he was spinning in circles, barefoot, digging his feet in the dirt in the softball field, while I was attempting to watch Lexi's soccer game on the field close by. Those events don't phase me. They are part of Robbie. We refer to it as "getting the stimmy out".  The bad behavior with this little boy at our house stuck with me. I know myself and try to give these situations a bit of time before I write about them. The problem in this case is mine. Robbie didn't want to make a new friend that day. No excuses. He simply wasn't interested. I am the one who was sad that it did not go as planned.  He is happy- I think. He has his family.  A brother, sister, mom, dad, and dog. He has school- where the routine is familiar and there are familiar faces. He has had the same teacher for 3 years and the same classmates for 4+.
I look back on my life and think- do I still value the friendships I made at 8 years old? Do I even remember them? A handful. A select few I cherish. I met my best friend at 15.  Many of my closest relationships were made in college. So - is it that important to push friendship at 8, especially for a special needs child. And when do I let Lexi fly on her own? She has made some friendships. She is 6. One of the nicest parts of her friends is, they are kind to Robbie. Are they are too young to realize he is different or is he just " Lexi's brother.?" I think, he is just her brother.
This weekend I am torn. Robbie's school has a book fair/ dance/ pumpkin decorating party which I was thinking about bringing him to. 2 out of his 5 classmates will be there. They had gone last year and both loved it. Lexi has been invited to a birthday party by our new neighbors at Pump it Up.  Pump it Up is Robbie's favorite place. Robbie was also invited- as a tag along. Do I take him him to a place he loves, with his sister- who is his favorite person- or do I take him to his school for an event he may love equally- or hate. Who will be crushed more if he doesn't enjoy the "socially appropriate " event- me or him?  What will make happier?  I think I may have answered my own question.........................

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.