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.

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

A little reminder to myself

To be honest, the last few weeks have really been wearing on me. Robbie's behavior is exhausting, both physically and emotionally. Every comment is 5 decimals too loud. Every time he hears no or is redirected there is screaming and sometimes hitting. Hitting could involve the wall, an object or a person (me).  The stimming behaviors are constant. Running back and forth saying "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE."  Scripting movie lines, a sentence from one and the right into another. The constant destruction of property. Emptying all the hand soap containers and refilling them with water. Pouring water in the ice cube container so they all freeze together. Pouring orange juice in his crocks and then walking through my in-laws rental property. ( which meant scrubbing carpets on hands and knees.)The only things that help are swim time and Dad putting Robbie in time out. Even then, he is down right nasty a lot of the time. We recently had a burst of language and when that happens behavior problems seem to trail behind. As Robbie gets bigger, so do his behaviors. I have to remind myself that while he has the body of an 8 year old, he has the emotional and social ability of someone much younger.
 I have also noticed his increased frustration on a daily basis at just about everything. He talks with an angry tone and has been yelling at everyone and no one. While at the lake this week he was talking in his angry voice to himself and it seemed to everyone around him. A little girl ran by just as he was at the peak of this performance. She stopped, kicked water in his face, and ran away. Lexi, after witnessing this, came running up to me to tell me what the girl had done. I wasn't angry with this little girl. Robbie was being inappropriate. Perhaps I should have gotten angry and pulled her aside to explain what was going on. Robbie didn't seem phased at all by a little water in the face and continued with his ranting.  I know part of his frustration stems from not being able to connect with other children. He clings to Lexi, who at this point is searching out friends of her own. He is so very aware of what's going on around him, what's being said around him, or about him. Recently he told me "that's not nice." When I asked why, eventually I determined he did not like me talking about him. Fair enough. I hate when others do it as well, and shame on me, I know better.  At dinner I asked him if he was with me, present. He responded by saying "I'm trying Mommy."  This I know to be true. He is trying really hard.  I shared a picture a friend put on Facebook- "My child is not giving me a hard time. My child is having a hard time." A good reminder for myself. For Robbie every day is really hard. For me, some days are just harder than others.

Quit you're whining............and give yourself a break :)

I have recently joined many different online Autism support groups.  As I read some of the posts, I feel frustrated for many of the parents posting.  So many of the complaints are members talking about the difficultly of their 3 years old with potty training, or their 2 and a half year old being out in public places. I know many, many people with Nero-typical children who struggle with potty training-at much older ages and most people who struggle with toddlers in public settings for any length of time. No one said raising children would be easy. Many of us- myself included, did not realize how difficult it could be.
Lexi was in a pull up at night time until a few months ago - at age 5. Many of her friends are still in pull ups at night. As one friend said the other day- there is a reason they make them in those sizes.  Robbie was not fully potty trained until age 5 and had a pull up at night until 7 and a half. At that point, he did not want to wear a pull up. Fortunately,  he was able to tell me.  I think many times, we as parents are in a rush. We want results. That is how we have been programed. Parents- give yourself a break. It will happen.

Recently we have been dealing with increased aggression and extremely high anxiety. This means Robbie will have an angry voice and hit or kick things to show he is unhappy. Additionally , every request is responded to with yelling and extreme anxiety. For example- Robbie would you some waffles for breakfast? The response is a very loud "NOOOOOOOOO, Mommy!!!!! I am not hungry. No waffles!!!!! No waffles!! NOOOOOOOOO!!!!!" Only to hear " Mommy can I have some waffles?" a few minutes later. It's as if it takes that long for Robbie to process the information. This morning I asked Robbie if he wanted a banana- by showing him the fruit as I asked. His immediate answer was "Nooooooo!!!! No banana!! " Pause.... "Banana?  No, Apple." just as I was washing one for he restated his request. " No apple, apple juice. I want apple juice." It was a reminder to me of how frustrating life must be for him. Sometimes he just can't get the request out at all and may be given something he does not want, with the inability to ask for what he truly desires. UGH, Can you imagine?  Now , imagine this type of response for every question or request.  Some days showers are met with the same anxiety and volume- others  they are welcomed, as water has always been his happy place.
I am not going to pretend that life with Autism is easy. It is not. It is difficult. It is stressful. It is exhausting. But sometimes so is raising children overall.  It is also wonderful. It is rewarding. It is the most important thing you can do.  Life has ups and downs.  Honestly some days are great and others make you want to crawl back under the covers. But again- Parents- give yourself a break! This is a marathon, not a sprint!

Why is Robbie different?

I knew it would happen. One day Lexi would ask why. Why is Robbie different? Why does Robbie have Autism? We have always been very open with Lexi about Autism, what it is and how it affects Robbie. However, I never wanted any of these conversations to hurt Robbie's feelings. Last night at dinner Lexi said " I hope Timmy does NOT have autism." Honestly- I may have said " me too" or just nodded my head. I caught  myself and looked at Robbie- who covered his ears and put his head down. My heart broke. We hurt his feelings.
Later, I told Lexi that she can always talk to me or Daddy about Autism but we have to be careful not to hurt Robbie's feelings. She responded by saying- he didn't cry- so his feelings were not hurt. Such a tough concept for a 5 year old. The conversation continued with Lexi asking why Robbie is different, like the boys in her class with down syndrome. Why do we have to have Ms. Yevette ( Robbie's ABA therapist) over all the time?  Why can't he be normal? Different is hard for me. I don't like different. Why can't he be like me... and Timmy?  I reminded her about how much she loves her big brother. How much we all love him.
Toni Braxton- famous singer- who has a son on the spectrum was quoted as saying  God punished her for having an abortion. The punishment was a child with Autism. How sad for her to feel that way. There has been a lot of discussion about her comments and while she was once a voice for Autism speaks, I hope she is no longer. Robbie is a gift. He is loved and I am thankful for him.  However I will say - again, as I have posted this opinion- Autism does not define who Robbie is. It is a disability. If I could remove it- I would. Autism makes life harder for my son. He is funny and smart- and sometimes hard to understand. Sometimes he does not feel comfortable in his own skin. Someday, people will be cruel.
Recently a friend asked me how other kids treated Robbie- if they were accepting or excluding.. Again- a comment or question from a friend that took me by surprise.( And- again- as I write this blog, my hope is understanding.) The comment made me think- one of the many reasons I love the program Robbie is in is because he is safe. He is surrounded by those who understand. His classmates are on the spectrum. There is plenty of support staff. The school offers social skills- to - in my opinion- allow the "regular" kids an opportunity to interact with those on the spectrum. Those they see every day, walking down the halls, using the same bathrooms, and sharing a lunch and assembly with. I fear a time where Robbie is forced back into his district school- where there is no place for him. Where he is the only one. Where he is excluded. Where I may lose my cool if he not treated kindly.
As I write this- Lexi has looked over my shoulder asking about the contents on the page. She sees her name- multiple time- and popcorn words. I wonder if Robbie sees his name- and words he can recognize. He can not tell me- yet. He is 8 years old. Lexi can- she is 5.
 While there has been much progression for Robbie in terms of language and communication, it can still be a challenge. Pictures are still helpful. Many times Robbie responds without really hearing what has been said. This morning Robbie had taken a bunch of loose change from a cup and put it into small ziplock bags. I told him he could keep the money but asked that he keep it far away from Timmy.  Timmy is still at the age where he puts everything in his mouth. The response I got was yelling no and him throwing the bags all over the floor. Exactly what I did not want to happen.  Honestly, I don't think he understood my request. He assumed he was in trouble for taking the money and putting it into bags. ( He has gotten in trouble before for taking multiple items and placing them in multiple baggies. It is wasteful and honestly, annoying because I end up having to put all the items back in their place and throwing away piles of baggies.) These types of exchanges are common. There is a lot of yelling- from Robbie and a bit of frustration at times from the rest of us. 
Overall I am reminded to slow down. Take a deep breathe. Explain things more clearly to Robbie and remind Lexi that different is not bad. Different makes life interesting. What kind of world would we have if we were all exactly the same?? Boring!!!!!

What is it like?

What is it like to have a son with autism? All I can comment on, is what it's like having Robbie as a son. Each child on the spectrum is very different- that's why it's a spectrum. Robbie is in the body of an 8 year old- a big 8 year old- but socially and emotionally he is somewhere around 4 years old, maybe. I won't lie- this can present somewhat of a problem at times. His meltdowns can appear bigger- and sometimes are bigger because of his size. He does not always know his own strength and many times doesn't understand how his own body works, moves etc. For example- many times Robbie slams door shut but really doesn't mean to- he just can't connect the dots between his force of action and what it will do. This disconnect appears through out his life. He knows his name is Robbie Hummel- however if you ask him what his last name is- he can't answer. He doesn't understand the question- one that school and home therapy has been working on for weeks. The irony is as the end of the school year approaches he will most likely "Master" this skill, only to lose it during the 2 week gap he has between the regular school year and extended school year. Robbie will be going to summer school for 6 weeks- which may seem awful- but necessary. He thrives on routine and needs constant reinforcement.
While Robbie has made tremendous gains in his speech and language he still has a robotic tone many times. He also gets stuck on a topic or movie line. This past weekend we explained we were going to his cousins house to swim in their pool. For 3 hours leading up to this event we heard " let's go, swim in the pool. I want swim in the pool. Come on let's swim in the pool. I want swim in the pool" etc, etc, etc. Of course to be fair that was almost matched by his 5 year old sister asking " Are we there yet?" the minute we entered the car and consistently for a large portion of the ride.  One of the hardest parts for me right now most times is listening to Robbie attempt to verbalize a story or situation. Tonight at dinner he was upset as he attempted to recap the timeout he received at school. While I know it was warranted, hearing him explain using his 3-4  year old verbal skills was difficult.. "Miss Kim yelled Robbie go to time out after threw green block. Go to time out Robbie." in tears. - Robbie always speaks in the first person regarding himself. He will not say I or me- it's Robbie. He has also started to complete tasks that he wants me to see- like making his bed or putting his clothes away- which is wonderful- and after I say " Good job Robbie" He will say- " yes it is a good job Mommy, yes it is a good job Mommy, Mommy yes it is a good job." using a Dustin Hoffman rain man tone. Bittersweet- it is. He also decided to "do laundry" over the weekend and poured bleach on his rainbow blanket. Then noticing the washing machine had clothes in it- decided to put the blanket in the dryer- with the other colored laundry. Yes- it was awful. He did admit to the mistake and seemed to understand when I showed him the bleach stained laundry- not to do that again with out asking for help.  Big boy task- which could have happened- and I 'm sure has happened in other households.
 He has begun to play a little with other children when we venture to the lake. This is a huge positive- however he will only "play" with children much younger and generally seems to prefer girls. Not to play any type of girly games- just the opposite. He likes to be chased and have squirt gun fights and swim- but with those who present no threat. Those who are too young to understand that he is different and are on his level socially. He has begun to understand that he is different and even started to verbalize this. All I can say- "you are perfect."  And again I am left wondering- what will adult life look like for Robbie. I am skipping puberty in my mind because- good god- it's an awful time for everyone! When Robbie says "don't leave me Mommy"- which he says often- even when I leave the room. My response is " I'll never leave you Robbie- you are stuck with me forever." and this may be true. An old friend came to visit recently and she asked what type of facilities there are for those like Robbie as he grows up. Of course I have thought about it- sort of- but honestly always imagine him home with us. He's 8 years old. I was definitely taken back by the question. Few have been that direct. But again all I can think is " I am never leaving you Robbie. You are stuck with me forever."  who knows what the future will bring for my boy as he grows. matures and perhaps will want a life of his own? For now- I look at all three of my children's beautiful little faces and can't imagine them anywhere but here- under our roof, in our home, sleeping soundly in their beds. ( Who am I kidding- sleeping anywhere- as long as they are sleeping.)

Don't judge- Sleep is key

I just finished reading a blog written yet another Autism Mom. Her son is now 21 years old and she discussed "age appropriateness" for her son. He loves sesame street and Elmo stuffed animals.  While it may be sweet for a 5 year old she does explain he can have items at home but a 21 year old can't wear an Elmo backpack- he would get bullied.  This is an example of how all of us have expectations regarding development. Your child crawls, then walks, then runs, etc.  For some of us with children on the spectrum , things are different.  We have struggled with sleep challenges for years. Yes- years. Robbie is 8 years old. As a young toddler , he was a great sleeper. He would walk himself up to bed. Ask for a story and a snuggle. I would kiss him goodnight and leave the room. He would sleep in his own bed, most of the time. However as he has grown , there is a large amount of anxiety regarding nighttime. He knows he needs his "nighttime juice" to sleep. He has even tried crushing the tablets of clonidine on his own when he had a long stretch of insomnia. He wants to sleep. The trouble involves him sleeping on his own. He needs a warm body next to him. It can be Mom, Dad, or his sister. However, if that  warm body gets up, even to go to the bathroom, he will wake and most likely , not go back to sleep, no matter what time it is. This leaves him exhausted. It also makes it more difficult for him to learn and absorb material during the day- which is already a challenge.
Yes, we have tried a body pillow. Yes we have tried a weighted blanket. Yes we have tried a sensory diet. Yes we have tried a dog. Yes we have tried and tried and tried behavior modification, walking him back to room and waiting for him to sleep. Creeping further away. Even locking the door.  None of these approaches have worked. So, after years of being exhausted, we have modified our approach. Someone sleeps with Robbie. I know there is a lot of judgment regarding sleeping in your own room. For us, getting a some sleep versus no sleep has taken priority.  So again, as an Autism Mom, I say don't judge.  It has taken me a long time to get to the place where I am no longer judging myself or feeling like a failure because our nighttime routine does not look like many others. I am sure it will not always be this way. One of the many things Robbie has taught me is there is no timeline for him. He does things at his own pace, in his own time. For now we roll with it.

The importance of............Movies

There is a great story that was released by Autism speaks and picked up by National news. It involved a Father and son. The son , of course, has autism. The father discovered that by speaking in the voices of his sons favorite movie characters, he was able to communicate with him. What a break through, for this family. A relationship was able to grow, hope was given, lessons were learned and progress was made.  Those who know us well and came across this story immediately though of Robbie. Movies play a gigantic role in his life. They are his friends. They make him feel safe, happy or sometimes sad. I have mentioned in past posts that broccoli is the only vegetable Robbie will eat. Every time he eats it, he mentions one of two movies where broccoli was consumed.  If I want to ensure he brushes his teeth well, I will start singing the song from The Muppet movie, where they are brushing teeth. We were looking at book this morning before school. I asked him to name an object in the book. Soccer ball- was the object. This turned into an entire script of a Backyardigans episode regarding soccer monsters and lost soccer balls. However, he did ask me if I wanted to play.
Lately, the most rewarding times are when I have all three kids in the car and the Frozen soundtrack plays in the background. I say in the background because between Lexi and Robbie, it can barely be heard. Of course a five year old girl singing Let it go, is "the norm" these days. But to hear Robbie's voice and see the smile on his face- he is participating in an activity that he has not been able to in the past.


Of course moving forward we're always looking for movies where healthy foods are eaten and important life lessons are learned. Decent soundtracks are a bonus because Mommy can only listen to "Let it Go" so many times before sanity will be in jeopardy.

A Norman Rockwell Night

I had been working on this piece discussing how scary the prevalence of Autism is today versus 40 years ago. The numbers are staggering-
In the 70s,  ASD was estimated to be about 1 in 10,000. In 2010, the rate of ASD for children born in 2002 was 1 in 68 –(1  in 42 boys).   NJ has the highest rate in the country. 1 in 45 for children and 1 in 28 for boys.
I picked the 70's as a starting point because that was the era in which I was born. I have heard my mother say that she never saw Autism back then and I wondered if it was hidden, swept under the rug with mental illness, or truly a rare occurrence.
According to the data- it was a rare occurrence. I have many more thoughts on that subject- for another time.

So moving on we experienced what I'll refer to as a "Norman Rockwell" night. All five of us gathered around the dinner table- to a meal that was actually planned and cooked by me. Our daughter began by asking us to share our favorite part of the day- a tradition- when we all actually get to sit down for a meal together. She went first talking about the play date she had after school and the various "Frozen" themed activities they had partaken in. I asked Timmy- who of course can not respond at 8 months old. I did on his behalf discussing his wonderful bowel movements, glorious bottles and lack of naps. Next up was Robbie. I asked Robbie- even prompting him with the craft he made, and had shown me, at his after school social skills class. Expecting no response as usual and prepared to move on to Dad- Robbie said " in my backpack. Dad, let me get it." and got his newly made bracelet from his backpack to show his father. It developed into a discussion regarding the colors he used and with pride he displayed what he had made. Robbie has never answered that question- What was the best part of your day? Even with prompts. So while I did give him the suggestion- he actually used it and gave us a glimpse of his day. A glimpse is a beginning though , and I'll take it. It is progress!!!!
The wave of emotion I felt was overwhelming and my eyes welled up with tears. I told my husband I thought I might really cry. Later while all the kids were in the playroom he said" Can you believe this family we have?" It was an evening I wish I could freeze forever.

For some laughter at the world of Autism - at least in our family, I'll give you a snap shot of our crazy stress filled morning. At 8:00am I get all three kids into my car to drop Lexi off at school and make it back in time for Robbie to get the bus around 8:20am.  This morning while loading the kids in the car- at 8:05am I realize there is no car seat base for Timmy. Clearly I can not drive anywhere without a base to clip his seat into. Remembering Rob had taken my car on Friday night to the father daughter dance- and realizing he had removed the base to make room for an extra booster seat for a friend of Lexi's whose father was sick and unable to attend.  I frantically rummage through the disaster we call our garage looking for the base, texting Rob because I can not find it. He responds that he has it, along with the other base  to which I say- a little too loudly " I'm going to kill Daddy."- (Probably a few times as I call a friend in a panic, hoping she can drive Lexi to school. She could- all was saved.) After Lexi is picked up, I grab the car seat containing my 23+ pound 8 month old, Robbie's hand and  head back inside. Robbie says " I'm going to kill Daddy."  I chuckle. The bus arrives and as we walk out the door , Robbie smiles and says " I'm going to kill Daddy."  He thinks it's funny. OMG- all I can think at the moment. What if Robbie gets onto the bus and mutters over and over  "I'm going to kill Daddy." - or worse yet gets to school and does the same thing? Will I get a phone call or god knows what kind of visitor inquiring why Robbie is saying he wants to kill his Dad? Honestly- I am laughing to myself on one hand but feeling a little nervous as well. We had an incident in the past where he was talking about hurting someone and while we knew he never would and must be repeating something- it made us pause for fear of what others might think. I explain what happened to bus driver and aide- just in case- and they laugh along with me. Just to be safe I also send a quick email to his teacher- who also thinks it is hysterical.
I  feel blessed to have this beautiful family. Autism and all. And no, I did not kill Daddy. Lexi also asked me after dinner if I still planned on it.  Guess I need to watch what I say a little more closely. :)
 To Rob- xxoo

This is going to be GREAT............................................

And so it begins, just like every other time. I am so excited because I've found an activity I know Robbie will enjoy. It is for special needs children. They will be patient with us. I am excited. I am prepared. This is going to be great.......................................
Robbie comes home from school and I tell him he is going to go swimming. He is excited. He puts on his bathing suit. We get packed up. We drop his sister off with Dad at lacrosse practice so it will just be myself and the 2 boys. We're on our way. Robbie is excited. He talks about swimming. He mentions the animals we are passing as we drive through farm land to get to the Pemberton campus of BCC.  He is "on"  today. He is present. This is going to be great. We pull into the campus. To me it looks a bit run down but Robbie says "it's beautiful." We finally find the sports building. He gets out of the car. "Come on Mommy, Come on!" Robbie yells as I unload the stroller, sleeping baby and the large bag filled with the appropriate items needed for this endeavor. We make our way into the building and ask where the pool is. We are directed through the women's locker room to the pool. As we enter a wave of heat hits us. It is hot in the pool area. I look at Robbie- he doesn't seem to mind. The pool is huge. Robbie is smiling. We're a little early for the 5:30 special Olympics swim team practice. I see a mother and son on the bleachers. The boy is slightly older than Robbie and playing with an Ipad. I know he is part of the team. His mother asks her son to introduce himself to Robbie. He does and asks Robbie what his name is. Robbie does not respond- which is common when he is asked a question. I reply" his name is Robbie" to which the boy says, " I wasn't talking to you, I was talking to him." Oh yes- he is on the spectrum and that makes me smile. "You're right." I reply. "Do you want a turn on my Ipad? " the boys asks Robbie.  I explain to Robbie that he needs to answer questions when someone asks him. He is not paying attention to me. He is looking around the room and looking at that pool. I tell him we have to wait. Waiting is hard- as Daniel tiger says on the PBS kids show that Lexi loves to watch. Yes- waiting is hard.  The coach is in the pool giving private swim lessons to the brothers of the boy we had just been talking to. She acknowledges us and tells us to wait where we are. Robbie is sitting on the floor by the pool so I tell him he can dip his feet in. She tells him he needs to sit on the bleachers. I feel badly because I had thought he was ok were he was. Unhappy, he returns to where I am sitting. He says he needs to go to the bathroom and walks towards the ladies locker room, where we had come in. The other boy yells "hey you can't go into the girls room." Robbie is embarrassed, I think. I usher him to other side of the bleachers to the men's locker room. When he returns to the bleachers the life guard asks for Robbie's shoe size for flippers. I am thinking- No way will he put them on.  To my surprise , he does put them on- even though they are pink. We find his goggles, so he is prepared. We wait.  The coach tells the kids to bring their flippers and goggles to the other side of the pool. Robbie refuses. She comes up to him and asks if he would like to swim. He says no. Her assistant says "come on buddy, let's go". He says no. He yells no swimming in the nool. yes I wrote nool. I hug him and quietly say "Robbie , it is a pool. Don't you want to swim?"  "No , no swimming in the pool mommy. " I decide if we watch the session, maybe he will feel more comfortable. He sits on the floor. He inches his way closer to the water. He decides he wants to go over the team and see what they are doing- if I come with him. He picks up his flippers and I grab the goggles and we're off. Timmy is sitting in a onesie in the stroller because it is so hot his face is beat red. I keep an eye on him and walk with Robbie. We get his flippers and goggles on and just as he's about to get into the water I notice Timmy slipping down in the stroller. I walk back toward him because I don't know any of the parents well enough to ask for help. Robbie sees me walk away and tries to run after me with his flippers on. The coach , then yells "Mom, he can't run in flippers." Both things set him off and I know it's over.  I grab Timmy and come back over to Robbie. I make him sit with me close to where the team is practicing. They swim laps. They do the crawl, breast stroke, back stroke. It is beautiful. 5 boys, 4 on the spectrum. 1 with downs syndrome, who comes over to Timmy, looks him in the face says "what's up little dude?" to which I burst out laughing. These boys are happy. They are listening to the coach and her 2 assistants. They are swimming. Robbie is not happy or swimming. He leaves the flippers and goggles and walks back to the other side of the pool, where the stroller and our pile of stuff is. I follow. We sit for a bit longer, but now he is pulling at his bathing suit asking to take it off. His butt showing , more than once. I realize it is time to give up. I was told at the end of the 45 minutes session they get 15 minutes of free swim and I had hopped that would entice him into the water. The water is his happy place. It always has been.
We go into the dressing room and he changes.  We thank the coach and she I decide to talk later to come up with a plan to help Robbie feel more comfortable. On the way out I notice a large flat screen television showing the pool mounted to the wall. I show Robbie who says "It's beautiful."
I ask him if he wants to come back and he replies "No mommy. I don't want to come back. No come back, no come back. Robbie's house. Watch Despicable Me." This is repeated 10 more times.
I am going to try private swim lessons with the coach to see if that helps ease the anxiety. At least that way he gets to swim. I am hopeful it will, but you never know.
 So Again, I wonder. Is it worth the struggle? Does it make Robbie happy or cause undue anxiety? Is getting Robbie involved in an activity really about Robbie or is it about me?  Maybe it is me, wanting Robbie to have something, so I have something with Robbie. Maybe it's me wanting to be a parent sitting on the sidelines, proudly watching their child , with the other parents who are doing the same. We've tried basketball, soccer, gymnastics, yoga, bowling, horse back riding, karate, swimming, all special needs programs. Should I give it a rest? Maybe I will, after we try that track and field program that begins in late April I've heard so much about....................................

Parenthood, the TV series

I refer to the television series Parenthood in many of my blogs. I love the show, but it also pulls at my heart strings in ways other programs can't. My sister in law warned me to have tissues ready for this last episode- which I DVR'd because 10pm is way too late for this mommy.  The issue this family faces is their son beginning to understand he is different from the other kids. He has Aspberger's and is in that preteen stage where life becomes more complicated. The other kids are making fun of him and in this episode he explains that one urinated in his canteen on a class trip and called him a freak. He tells his parents that all the kids hate him and laugh at him- even the nice ones- and he doesn't understand why.  As tears stream down my face I  of course , think of Robbie. Right now we are in a good place. Robbie is 8. He is in a self contained classroom with other kids that are similar to him. He does not have any interest in team sports or after school activities like his Nero-typical peers. he has a schedule and he follows it. School, ABA at home, social skills and the occasional trial of an additional activity. Today we will be going to the Special Olympics swim team to see how it goes. (Fingers crossed)
For those children who are higher functioning on the spectrum, life can be incredibly hard.  Kids are mean. We've all been though some sort of teasing or bullying at least once in our lives. As a parent, there is nothing harder than watching your child suffer.
This episode also got me thinking about Robbie and our battle to keep him in his current school. At least there- he is with those who are similar to him. If he returns to our home district, he will be the only one. Yes there are other special needs children and others on the spectrum, but none who are as severe as Robbie. Our home school spoke about integrating him with the regular kids for specials- as they have limited resources- and it would "benefit" Robbie. My question is would it? Would he be the target of bullying or teasing? As he walked down the halls saying "eeeeeeeeeee" and wringing or flapping his hands, what would other kids do? As he continues to grow and does become more aware of his differences, how would being the only one help? My hope for Robbie long term is for him to develop friendships. Even one. Some support system other than his family.  Whether or not this will happen, who knows. I know I am dreading adolescence and all that goes along with it. Once again, we are lucky. On Parenthood the boy , Max, does not like touch or hugs. Our little boy can't seem to get enough hugs some days. So again, I hold him tight and tell him " I will always hug you, I will always kiss you, I will always love you" at least as long as I'm allowed!!

What about the children who don't have a specific diagnosis?

As I sit writing this, Robbie is in the room with me. He is bouncing in his seat, wringing and flapping his hands, concentrating very hard on the "girls human Lego" , his sister has been building. He is also pretending to "hurt feet" as he plays with the chair and places it on his feet (lightly). The whole time he is scripting movie lines. He jumps from movie to movie. He gets up- spins in circles and sits back down. His last few reports home from school have said he is "very antsy."
Since it's March and we have been stuck inside for months- this is no surprise.  He has moderate Autism, Dyspraxia and is very sensory based. We know this. We have been through this. We know how to handle this.  At least right now, we know what he needs.
I remember when it was decided Robbie would be placed out of district. Rob and I went to look at the program Robbie eventually ended up in. I have to admit, it was scary. There were children who used devices to communicate. Some did awkward things with their hands, ( wringing and flapping.) Some spoke to themselves- (scripting- as I now know it.) They all had a paraprofessional or aide next to them. I was sad. I was also unsure if it was the "right" place for Robbie. Thankfully Robbie has a Dad who is a special education teacher. A Dad who cried right away when Robbie was diagnosed because he fully understood what moderate Autism means.  A Dad who knew this was the place for him.  A Dad who knew the research showed we needed to act now- with intensity.  We were lucky. Robbie has a specific diagnosis that allows  him to get services he needs and a Dad who knows about special needs. (And a Mom who is learning along the way.) No- it is still not easy. There are a lot of things we don't do because honestly- they are too hard and stressful for Robbie and the rest of his family. Of course it will only continue to become more challenging as Robbie approaches (gasp) "the teen years." But  that is a whole different topic.
What about the children who don't have a specific diagnosis? A (somewhat) specific road map. Parents who are doing their best to figure out where their child fits in- but there is no one to tell them. Honestly, because no one really knows. Autism, PDD-NOS ( Pervasive Developmental Disorder- Not Otherwise Specified),  Asperger syndrome, Apraxia, Dyspraxia, OCD, ADD, ADHD, Dyslexia, Auditory processing disorder, MD ( multiply disabled), LD (learning disabled),  and/or Developmental delays. I am sure there are more I am missing. How can a parent, who has a child with multiple diagnosis, know where to go? This is the segment of education that is lacking. Honestly though - it's hard to place blame anywhere. How is our school system supposed to keep up? There are so many different unique needs. There is never enough money.  Today is so different than it was 10, 20 or 30 years ago.
Once again- a reference to my favorite television program - Parenthood. The parents of Max- a pre teen with Asperger syndrome decide to start their own school, because they are not satisfied with the options for their son. How amazing - and (financially) fortunate they must be. If only we were all so lucky! For now there is just so much to learn. Hopefully it can be done fast enough, well enough - more than enough. That's what these children and families- need and deserve. A fair shot at helping their child to reach his or her potential- whatever that may be.

The Power of Siblings

This post is dedicated to my siblings. I was fortunate enough to have an older brother and a younger sister. Both of whom have shared in my laughter and joy as well as my pain and sorrow.  Both of whom I love unconditionally as they do me.
How this relates to autism....... It doesn't really- but it relates to my family and our situation. Robbie is truly blessed to have two siblings.  A sister and a brother. Both younger. Both who adore him.  As parents you worry about what will happen to your children when you are not around to ensure they are safe, happy and healthy.  As a parent of a special needs child, you worry, twice as much.  But watching them play together, share together and laugh together is amazing. The memories they are creating are awesome! Just as the memories of my brother making me laugh so hard at dinner- the milk I was drinking came out of my nose.  Or- my sister and I pretending we were ice skating, in our socks, on our parents hard wood floor, falling down and laughing.  Again- Robbie is lucky. Lexi is lucky. Timmy is lucky. They have each other.
To my sister and my brother- I am so lucky to have you both!

Each individual with Autism is unique............and similar

What it means to be "on the spectrum" (taken from Autism Speaks' website)

 Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.  For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.

The word Autism creates many different images. I always thought of the person who made little to no eye contact, muttered things to themselves, did not like anyone to touch them, and who was incredibly intelligent. Rain man. A movie I've seen but now can't bring myself to watch. I never thought Autism could look like my son, Robbie. 

How is Robbie doing? The question is often asked. Truly he is doing really well, for Robbie.  Robbie can speak in full articulate sentences, most of the time. However there are still times of frustration for him where he can't communicate what he wants. He still says "NO" every time he is asked a question. It is a defense mechanism. It's easier to say no and then try to understand what has been asked.
Our ABA advocate made a statement the other day that was tough to hear. "Robbie appears to be much higher functioning than he really is. He doesn't have the savant piece many with autism possess and he is really struggling academically."  On a positive note he has a lot of personality coming through. He is funny. He likes to make others laugh. He likes touch. He understands many (not all) social cues. These traits also may add to the appearance of a higher functioning child.
If you ask Robbie a specific question like- How was your day? He'll always respond , my day was good. If you ask him what his name is, he will reply , My name is Robbie. If you ask what did you do today? He'll reply, my day was good. If you ask How are you? He'll reply my day was good.  There are certain responses he has been programed to respond with and he still has trouble answering most direct questions.
The scripting is still constant as well. This morning I woke up to "get the food, feed the bear, get the food, feed the bear, get the food , feed the bear, get the food feed the bear". I know that comes from the movie Over the hedge, but many may not.
Sensory issues are also an enormous task. Robbie literally NEEDS to jumps, swing, move etc. He is getting much better at communicating when he feels like doing these things but still struggles with things like , pumping his legs on the swing set. He is so sensory orientated that while he is swinging and feeling the sensation that calms him- he can't get his legs to cooperate. He has trouble using his body while getting that sensory feedback.
All that being said I was reminded of how fortunate we are, because we are learning the skills needed to successfully manage ASD for Robbie.  Robbie was a guest at a birthday party this weekend. He was excited to go as we discussed it the morning of. However, when we pulled into the parking lot he screamed "No, I don't want to jump." It was at a trampoline park. One we had been to a handful of times and he always enjoyed. The No's continued, but I got myself and "baby brother", as Robbie refers to him, out of the car. I began to walk toward the entrance. Reluctantly , Robbie followed. Once inside he insisted he did not want to jump and wanted to play video games. For the first hour, that's what he did. Eventually, he did jump. 
This party had children from all ends of the spectrum. The boy was in Robbie's class last year but is now mainstreamed with an one- one aide. The older boy (12 or 13) whose father had by the arm for the entire party and was completely non verbal. The boy who ran over to me and asked if I was holding a baby? Was he a boy or a girl? What was his name? And than ran back to jump. The boy whose Mother was trying to calm him down by giving him potato chips one at a time after holding him and talking quietly in his ear. The birthday boys- brothers (8) and (10 or 11)- both on the spectrum, who were happily jumping, each in their own worlds-  and each with an aide. Robbie- who when he decided to jump- would jump from trampoline to trampoline- occasionally knocking others down without noticing, saying "eeeeeeeee"- with a huge smile on his face. None of these children interacted with each other. It was like being at 15 individual birthday parties. For the most part, they were happy.
 What an amazing crew. Each unique, but similar in some ways.  Each having their own challenges and strengths. Each with amazing parents who came prepared with the tools they knew they would need to just get through. Because at the end of the day, after all the headaches, seeing that smile on your child's face is worth it- every parent knows that. Even if, by mistake, we knock a few down or get knocked down ourselves along the way.

I Love Medford Lakes- mostly..........

Nine years ago , as a newly married couple, Rob and I searched for the perfect spot to raise a family. We came across the community where we now live and fell in love. I remember being so excited at the thought of my children riding their bikes to school. To be able to go to the many lakes to swim and canoe. To attend camp in the summer. To be a part of a small community- so similar to a place I had spent my summers as a child and so dissimilar to the city where I had grown up. Fast forward nine years. We have three beautiful children. One is in the school system and we have been happy with her experience. One is an infant and I hope he will have a similar experience. However our first born is almost eight years old and has been out of district for 4 of those years. His name is Robbie and he has moderate autism. His preschool experience in Medford Lakes was frustrating as we - parents and teachers (whom we loved) determined this was not an environment where he could thrive- or even learn. He was put in the back of the classroom- with a small divider on his desk. With the 15 + other preschoolers going through their agenda, he was expected to follow his own with the help of an aide. It was ineffective, for everyone. For the past four years Robbie has been placed out of district in a self contained ABA based autism classroom. He has an aide- as do all his classmates. His teacher is ABA certified. He receives individual speech and individual occupational therapy two times weekly. He has a behavior plan. His class goes on monthly field trips focusing on life skills. He attends social skills sessions weekly after school. He has made a "friend" or two. I use the term loosely because the interactions between those with moderate autism is markedly different than those that are neuro-typical. More importantly, this wonderful teacher he has, and the program, with wonderful aides, he is in, KNOW Robbie. Outside the world of the IEP- Individual Education Plan- he is cared for. They know that he needs many sensory breaks throughout the day. They know that he will be more productive if they let him jump or swing in the sensory room first thing in the morning. They appreciate his humor. They know he needs multiple prompts to complete just about any task. They know he will try to avoid doing his work when a substitute comes into the room by saying "I am sad, or Hug a me." (He is really cute, after all.) They have done this before with other children on the spectrum. They have a program. Rob and I were not shocked when the case worker from Medford Lakes told us the district wanted to "explore the idea" of Robbie returning for his education. She discussed how trust had been an issue previously as we battled to get him into an appropriate program and she understands we may have concerns. When we asked if she was getting pressure from the new superintendent to bring back the students who were placed out of district- she looked us in the eye and said "No, we just want him to be part of the community." Rob and I were shocked however, when he called the superintendent and asked him the same question- only to get a different response. "Yes"- he said. I am going to bring back some students- namely a student- Robbie. He had asked our case worker- who has appeared at 2 meetings to hear about Robbie's progress in the last 2 years- which student she thought had the best potential to bring back. She said "Robbie." So again-trust is an issue. When Rob stated the obvious- there is no current program for Robbie, the superintendent discussed a MD (Multiply Disabled)classroom. This would be a good fit for 99% of the special needs students in the district. What about the 1%? Our 1%? What about Robbie? He can not be the guinea pig for the districts new program. He would be the only student with moderate autism in the classroom. There would be way too many distractions for him to focus. Focus is a huge issue for Robbie. As is regression. Two of the well documented BIGGEST issues for those with autism are FOCUS and REGRESSION. We see regression every summer, every spring break, every long weekend- and even from the end of the school day Friday to Monday morning. Yet- right now Robbie is in a program with a record of success. How would our son fair in a program being thrown together because this is the new superintendents' initiative. We know money is an issue as well. Budgets are limited. What is the price of a child with Autism?
 Again, I love Medford Lakes. We have a child in the school system. I applaud them for putting a program together for the 99% of special needs students. However, Robbie will not thrive here. He will not be able to learn to his potential here. Not yet, anyway. It would be DETRIMENTAL to his development. There is no way to put a price tag on that. More evidence that our case manager does not understand Robbie at all was her comment about "being a part of the community." Robbie is a part of the community. We live here. People know him. He frequents the lake to swim and play in the sand- with us. However he will not play on the sports teams here. He hasn't even successfully completed a season on a special needs team. He will not go to camp here. He needs extensive ESY- extended school year or summer school, and can't ride a bike or be on his own for any extended period of time like the other campers. As quoted by our case manager when Robbie left the district, "The Medford Lakes schools are a great place for the AVERAGE child. However if they are gifted or special needs, it's really not the right place." (Yes- still the same case manager.)
As Robbie runs into my room in the early morning hours to say "Mommy, I'm scared. Hug a me." I almost say "I'm scared too." But instead I say a phrase, if you're around us you'll hear me say often. "I will always hug you. I will always kiss you. I will always love you." And I squeeze him tight. Because that is what he needs. SO now, we prepare for a fight.

He kissed a girl

Here is the question. Is it harder or easier for someone who has an obvious disability than those whose disability is not so apparent? For those with down syndrome there are specific unique characteristics. For those who are in a wheel chair, it is obvious because of how they get around. For someone who is blind, many times they have a walking stick to ensure they do not trip. I ask this partly because of a conversation I had with my 5 year old. There are two boys with down syndrome in her class. She told me that even though they have their own "teachers" everyone in the class helps them when they need assistance.  If you saw someone in a wheelchair and there was not an electric door, wouldn't you open it? If a blind person was going to trip over an object wouldn't you help to ensure their safety? What about someone with Autism? Most of the time you can't tell by looking at someone if they are on the spectrum. I remember someone saying to me " what a shame, Robbie is so good looking." To mean the good looks would be wasted on someone with Autism.
The question is , is it a benefit or a drawback and when does it begin to become one or the other?
Robbie kissed a girl. On the forehead. After they shared a moment discussing what was on his Ipad. It was a friend of  Lexi's who he has interacted with before and who has always been very nice to him. She thought the kiss was great. (Once again, on the forehead.) It showed her that he liked her. She is 5 or 6, so still young enough not to see all the differences in Robbie.  After all, he is almost 8, a cool older brother and very cute! (Says proud mama)  I joked about the future as Robbie put his arm around the mother of this girl ,to show her his Ipad, that he was "buttering her up" to be his future mother in law. All jokes aside this could be a sign of his ability to form relationships in his future. I am happy that he has shown interest in the opposite sex and is aware there are differences. Our home ABA therapist explained that many of the 5th graders she deals with are unable to make the distinction. This causes a lot of issues for them as they go through that horrible stage of growth named Puberty, UGH! Of course there is work to be done as well. His home therapist is going to bring social stories for Robbie to read. These are visual images of life events and situations.  Who can forget the social story called "pooping in the potty." This is poop. Poop goes in the toilet. Poop does not go in your pants. etc, with visuals, really pictures of actual poop in the potty. Sounds funny but necessary. The differences in friendship between girls and boys- age appropriate of course. Should be an interesting read!!

We had Robbie's IEP meeting today and one of his ongoing struggles are with "popcorn words."  Words like THE, AND, A  , etc because there are no visuals used with these words.  For Apple- you can show a picture of an apple. He also struggles with concentration and stimming behaviors. He has a hard time sitting for any length of time and is given many sensory breaks throughout the day. Regression is another big one. By the end of the week many skills are "mastered" but the following Monday just as many are lost. It's like losing 5 pounds over the course of the week only to gain back 3 over the weekend.  So we start again. Robbie is able to walk to the bathroom and back by himself- a huge win but still has a one to one aid in the classroom- as all his classmates do. Yes, Robbie is making progress. He is moving forward but with a lot of help and support. Nowhere near a mainstream environment. Not even a MD (multiply disabled) or LD (learning disabled) environment. He is in a self contained Applied behavior analysis (ABA) based Autism classroom. And that is where he belongs. I make the point because the suggestion of Robbie returning to our home district was brought up today. We know it is not the right place for Robbie.
Back to my original question. Is it easier or more difficult to look like an average Joe? In my opinion , for now, it is better for Robbie that their is no distinct look of autism. While it may be hard for parents, when their children just look as if they are undisciplined , the children of Autism get a fair shot. Maybe they even get to be the cool older brother and kiss the girl. For now., I'll take it :)

What would you do?

Think of a time when you felt so anxious about a situation or person. A tough day at work. Too much homework to get through. A fight with your spouse. A truly horrible day. What would you do to make yourself feel better? Go for a run? Take a yoga class? Get lost in a great book? Meet your best friend for a glass of wine? What if you were a 7 year old with Autism?

Can you imagine feeling like spiders were crawling on your back? You could feel them but not see them to brush them off. You would wiggle and jump, probably squeal or make some strange noise. Now imagine you could not communicate what was going on.

Robbie has been talking about spiders. Sometimes they are in reference to his latest movie obsession- Cloudy with a chance of meatballs 2- "Cheese spider" but sometimes , according to him, they are on his back. The other day he was very uncomfortable and while telling me about the "spider" on his back asked me to scratch it. I did as requested and then he put my arm around him and squeezed tight. As quickly as the situation had began, it was over. It made wonder how many times in a day he experiences that amount of distress? How many years had he been troubled by this without the ability to communicate? Makes me sad to think about, and relieved we are at a point where he can explain his distress- at least a little.

I recently shared a blog on my facebook page written by a 13 year old girl with autism. She was blogging about a situation she observed. A boy of similar age, who was nonverbal, was in gym class. He made his way for the door to escape the overwhelming noise, activity, smell, sights, feelings, etc. The teacher and aid restrained him. They had to. That is their job. To keep him "safe."  They were boasting about how they got him just in time. Feeling proud of their jobs. To me- that makes perfect sense. Once again, they were just trying to keep him safe. However, from this girl's perspective, all he was trying to do was get to a safe place. A place where he could breathe. Where things were quiet. Amazing. Everyone had the same end goal but because this boy could not communicate, it was not met.

I write about that situation as I am continually trying to assess what Robbie needs. Not what he wants- candy and movies - but what he needs to function at his highest potential. To be the best, and most comfortable, Robbie. Thankfully things are getting easier. We are fortunate. But we will always need to reassess situations and environments, as all parents do.  Next week we meet for our 3 year IEP meeting to discuss re- evaluations. To decide what tests should be retaken and where his placement will be. I am hoping there will not be a fight to keep him in his current classroom,  since it is out of district. Fingers crossed. We are prepared. We are his voice. He is our heart.

Self Regulation

"I'm OK mommy. I'm OK mommy. I'm OK mommy." Robbie is almost yelling from our living room. I am in the kitchen and I did not ask him if he was OK. It is a question that I ask often- usually with the scripted response "yes I'm OK."  Sometimes I will get "I'm not OK." But rarely is there any explanation of why he is not OK after. I know there is a problem because this circle of language continues. It's similar to those you see in a scary movie hugging their knees telling themselves it's going to be alright when we all know it is not. For Robbie- it's all part of his ability or many times inability to self regulate.  He has gotten much better at it.  Generally we  know what seasons, days, or issues are going to be a challenge. Right now for instance. We are in the middle of a brutal winter. Lots of snow- snow days. Too much screen time and not enough output of energy. It happens every year and we all feel it. To Robbie's credit he has developed some coping skills. The small indoor trampoline, laying under many blankets and pillows for quiet time, deep breathing techniques, and telling himself he is OK.
Saturday night Robbie had a tough night. He fell asleep around 9:30pm after his nightly ritual of clonidine and melatonin. At 1am he woke up. From 1 am on- he was awake. By 2:30am I had given up and told him to grab his Ipad in hopes I could get a little sleep myself. By the next day around 11am we heard him in the kitchen. He had gotten his clonidine out of the cabinet and was crushing a tablet to put in the juice cup he had retrieved. Rob asked him what he was doing and he explained he was tired and wanted to sleep. Rob moved the medication away explaining it was for night time use only and took Robbie upstairs in hopes of getting him settled so he could get some sleep.
The exchange floored us a bit. We thought we were being sneaky by slipping the medication into his juice at night. We've always called it night time juice but never imagined Robbie really understood what we were giving him. Another example of how bright this boy really is. Most times it is unclear if he is paying attention to anything going on around him, aside from his movies, Ipad and anything food related.
The hope is Robbie can get to a point where he can self regulate, especially at the appropriate times. Nighttime is a big one. Because we're all tired!

You've come a long way baby! Or have you?...................

While leaving our favorite* (and only shoe store for Robbie) I was patting myself on the back for how calm I remained during our visit.  After picking Robbie up from his after school social skills class, handing him his favorite snack (a way to keep him calm and happy) I explained that we were going to get him new shoes. Robbie has 1 pair of shoes. Sneakers. They are getting worn and I wanted to ensure his feet had not grown much since the fall- as he has certainly grown in height.  "No shoes" he yelled. "I don't want shoes." Of course his 5 year old sister chimed in- "I'll get shoes, Mommy." She has more shoes than I do.
I proceeded to drive to Olly- our shoe store of choice. Robbie immediately yelled once we were in the parking lot- "no shoes, I don't want new shoes."  I ignored the yelling and calmly parked the car. Once I had everyone out and baby in tow we began to walk towards the store. Robbie stopped twice, yelled no and I continued to walk- of course checking for on coming traffic. He followed and into the store we went. "No shoes mommy" as we entered the store. I searched the store for the familiar face that seems always to be there. The same saleswoman who has helped us for the last 3 years. Sees me, hears Robbie and knows the drill. We go back to the train, where feet are measured. Robbie, still under protest, takes off his shoes and puts his feet on the screen to be measured, while yelling "No!" Of course the computer is giving her problems, which she calmly works through. After discussing whether of not we should try to move Robbie to the other train, where Lexi had just gotten her feet measured and the computer was working,  I made the decision  to keep him where he was. I explained in my familiar mildly sarcastic but all too true voice- this is where Robbie gets his feet measured. He always goes to the same train station, there is no other. She smiles and gets what I am saying. Takes the measurement without saving our information to the system. Amazingly, his feet have not grown. She then asks what type of shoes I am looking for. Laces or Velcro, particular color, etc. I ask Robbie what he would like, trying to show him really cool bright blue shoes with laces. "No shoes. I don't want shoes. My shoes. You can't have my shoes" as he puts his old shoes back on his feet. Then, I understand his anxiety. He likes his shoes. They are his. He is afraid they will be taken and he will be given some new, different shoes, that are not his.  I look at the sales women and say- "you know the drill, same shoes." She adds- " just a half size bigger." And then of course Lexi begs for new shoes as well. Sparkly new shoes. How can I say no. The sales women takes the two boxes to the register. Lexi asks who the other box is for- knowing full well they are Robbie's shoes. I explain to her- she knows who's shoes they are and please keep it to yourself to avoid a meltdown. Robbie is still saying "no shoes" but at least not yelling it.
Our purchase is rung up. She takes my expired coupon and enters in my rewards number, saving me $20 from the $100 purchase. Hands me the bags, looks me in the eye to say thank you. A look that does not show pity or frustration, just thanks for the business and understanding.
As I go over this interaction in my mind I realize- it is not me that deserves a pat on the back- but her. For the past 3 plus years she has helped make a difficult situation, a little less difficult. There was a time when Robbie stepped in tar at school and ruined his shoes. I called the store to ask them to hold a pair of the same shoes for him. To my dismay, they were discontinued. This woman found a pair so similar, Robbie did not fall to pieces when I gave them to him. It's these small acts of kindness that help.
I want to thank those who do see us- Parents of special needs children- for who we are. Just parents with a little more on our plates than most. Thank you for making what is an easy situation for most- easier for us, for me, for Robbie. I am a loyal customer because of you!

Moving Forward

One of my favorite television shows is Parenthood. One of the dynamics on the show is a family who has a son with Asperger's. (They also had a surprise "bonus" child) Last week the episode explored their worries and hopes for his future. This , of course, is something Rob and I think about for Robbie. In the show an older character learns he has Asperger's as well. He is a photographer  and is professionally successful while he struggles in his personal life.  They discuss the positives and negatives about this man's life.  He is independent, has a career and has had meaningful relationships.  However , these relationships do not last. A failed marriage, an estranged daughter, etc.

Robbie is not Asperger's but Asperger's is part of the spectrum. A friend forwarded a video developed by a young adult  with Asperger's. He spoke about how difficult it can be to get through the day. Many times that was all the energy he had- to just get through the day. This is why many on the spectrum like things in a certain order and why everything has its place. This makes things a little easier for them. So when Robbie was following me around the house yesterday with a needle and thread to sew a pillow case that had ripped I decided to stop what I was doing and complete the task for him. These are the situations that could turn into meltdowns, but can be avoided. 

Robbie also pointed out the obvious to me on Saturday. He is a boy. I am leery of letting him go to public restrooms on his own- for a variety of reasons. At one of Rob's basketball games, Robbie had to use the bathroom. I grabbed his hand and passed the men's room, heading toward the ladies room. He said "No, that one." pointing to the men's room. I told him I couldn't go in that bathroom because I am a girl , not a boy. He said " I'm not a girl, I'm a boy." It made me pause. My baby boy is growing up and becoming more independent. I let him go to the boys bathroom on his own, while waiting outside of the door. I welcome him doing things like pouring his own juice and putting his plate in the sink. Now I am going to have to start allowing him to do more of what almost 8 year olds do. But, what is that? I honestly have no idea. I have no idea where he should be in relation to an neurotypical child.

A fellow blogger wrote about his ten year old daughter. He was taking her to school. She was scripting her morning routine when they came upon two fellow classmates. The girls were chatting about ten year old girl stuff. They never acknowledged his daughter and she never acknowledged them. This made him realize how far behind his daughter is socially and what that may mean long term.  It is these moments , good or bad, that remind you how different your child is from the norm.

We are fortune that Robbie is in a self contained classroom, which means all the kids are on the spectrum and the teacher to child ratio is 1 to 1 or better. This also means there are no models of behavior for Robbie or me. Still, I am confident he is in the right place. Maybe one day he will be able to mainstream for a portion of the day, but right now I know he is safe from exclusion and getting his feeling hurt.

 One of the aids and his teacher has told us how funny he is and how much he adds to the class.
At dinner last night, we experienced this.  Robbie was fake crying, as he often does. He said "Robbie is crying." I asked why and he replied "Because I won't ever be president." We all laughed, including Robbie. It was a line from a movie, but he was trying to be funny and succeeded! I told him he probably will not ever be president. However, can you imagine having a president on the spectrum. One who would not lie, cheat or steal because those behaviors go against their very nature! It could be amazing!! One can dream........................

The good the bad and the exhausted

There is a wonderful story of pure kindness floating around Facebook that actually made it to the news. A woman and her autistic daughter were on an airplane. The mother was dreading the flight and of course prepared herself for the worst. Then the best happened. The passenger sitting beside her daughter did not shy away from being called "daddy." He did not look away annoyed or worse, look at the mother with those judgemental eyes that say" you are a bad parent. control your child." Instead he acknowledged the little girl. He let he call him daddy. He played with her.
My sister in law passed this story along to me and I also saw it on the news. It made me smile. There is kindness in the world. A simple kind gesture meant the world to this family.
There is also a horrible story where lack of compassion take the lead. A mother took her 23 year old son who has autism to the movies. When the preview began the boy, or man as he appeared to the other patrons, made noise. He was bothered by the sound and had a hard time adjusting. It seems this happens to this boy and generally he calms down as the movie begins. On this day he did not get the chance. Other movie goers began to yell at the woman. They insisted she "shut him up". They made it so unbearable that she decided to leave. They applauded as she began to exit the theatre. This scenario breaks my heart for this family. But it does also make me remember many times when I have taken Robbie to the movies. One time in particular was an Autism speaks event. The entire theatre was full of those on the spectrum and their families. The volume was lowered and the lights dimmed, but not completely.  I'll be honest.......it was not enjoyable.... for me. There was a lot of extra noise. A lot of "eeee's". A lot of getting up from the seat and jumping. The wonderful part of the event was the fact that it was a judgement free zone. I wish there were more opportunities like this for families with autism, who need it or could benefit. We are lucky. Robbie loves movies and we have a wonderful theatre near us with large rows and huge reclining seats. He can get up if needed. That being said I do try to be strategic about when we go to the movies and where we sit. But it has gotten much easier over the years. This is most likely because we have practiced. We were given the chance.
The exhausted would be referring to myself, my husband and Robbie. It was not long ago I was
happily rattling off the amount of "good nights" we'd had. A good night could be one where Robbie wakes up a few times even, but falls back to sleep, or stays quietly in bed. A bad night is one where Robbie is awake and disruptive. Continually moving, running, jumping, kissing, hitting, kicking, talking , yelling...............generally waking up the entire household and being a pain in the behind. He will go to sleep at 9pm after taking his sleep meds and then wake up at midnight or 1am. He will remain awake until 5am. At that time he falls asleep- or more accurately passes out from exhaustion.  When I have to wake him up at 7am- he is not a happy camper. We have had a few weeks of too many bad nights. A call to the neurologist/ developmental pediatrician is on the immediate agenda.
Round and round we go it seems.
To end on a lighter note with more good. This week I had the first real phone conversation with my son.  I was out of town for work and called home. I asked him a few brief questions and he answered, appropriately. He is 2 months shy of 8 years old. It is a real triumph.
Additionally we received a note from Robbie's teacher explaining a scenario that occurred in the hallway. Robbie was walking with his teacher and came across a little girl his age or slightly older in the hallway. He stopped dead in his tracks, looked at her and said " wow, cute!" His teacher thought it was hysterical. She does laugh with him often.
I was laughing on the phone to my best friend explaining this story and said thank god for small favors. I know we will be blessed with infinitely more good, fight our way through more bad and honestly, isn't everyone exhausted these days!!!