My Smile is wrong

April 18th- posting now......
"Where did this come from?" asks Rob. After I explained my conversation with Robbie tonight. I sat by his bed and asked what he would like to do tomorrow- It's spring break- covid 19 style but we still have options- paint rocks, watch movies, go for bike ride... but he really wanted to talk about his teeth. He told me he couldn't smile because his teeth are broke or wrong. He pointed to spaces in his smile and teeth that are too small - or don't line up. He was incredibly specific. Truth be told- not long ago ( prior to being home) we went to the dentist for a cleaning. The option of braces came up. It was just suggested as an option as no one knew if Robbie could handle them and if it would be worth it. My perspective has always been- we will fix teeth. Personally- I had it all- head gear, braces and a retainer. I was not happy at the time- but now am thankful.
The question has become- how does Robbie feel about it? My intention was to have a consult with a local orthodontist - but then- life changed and everything seems to have paused.  The bright side is- now I know straight teeth are important are to Robbie- thus- we will absolutely make happen for him. The down side is - " so you will call tomorrow, My teeth will be fixed tomorrow. Braces tomorrow?!"  After explaining a few times - I hope he understands, but I know the question will be asked tomorrow, and the day after tomorrow.  And so on..................

Holy Shit

So the title of this blog pretty much sums things up right now, for so many reasons. Covid-19, social distancing, and self quarantine..... these are all crazy terms for all of us- and now lets think about it from the perspective of someone on the Autism Spectrum.  The loss of routine, the loss of seeing peers, the loss of sanity - at least a  bit in our house. For full transparency- this has hit hard. Robbie- who loves his alone time, in his room, with his movies- has really been missing the social interaction he gets at school. I've always wondered about Robbie and social interaction. He doesn't seem to have " friendships" in the way Lexi or Timmy do- yet he loves seeing his friends and having some interactions- which are usually brief. Yet movies remain a huge staple in our house- for all.

Over the last 2 weeks, Timmy had  lessons about weather- Hurricanes, tornadoes, thunder storms , etc. Wednesday night we decided to watch a movie - about weather. We choose the movie Twister.  (Robbie also loves weather- watching the clouds, rain and the sun in the sky.)  The movie Twister is rated pg-13 but after reading the reviews I decided it would be alright to watch as a family. The movie is great- if anyone hasn't seen it, but there is a bit of language. The type of language you'd expect from people who are risking their lives in dangerous situations. Timmy fell asleep immediately- but the rest of us watched the movie in its entirety.  Fast forward a day- we had one heck of a storm. Crazy rain that seemed to come out of no where. As I ran up the steps to close the bedroom windows to avoid the rain getting in,  Robbie ran behind me. "Holy shit, gotta close my window!"  Lexi came out of her room at that exact moment and we both burst out in laughter. " Can you believe what Robbie just said mom- he probably got it from the movie last night" she said. Later I described the scenario to Rob and of course- Timmy over hearing- asked what Robbie had said that was so funny. I made something up- as it wouldn't have the same amount of humor if our 6 year old was yelling "holy shit."  Yet for our 14 year old - on the autism spectrum , to use the term appropriately and to give the rest of us some much needed laughter- was awesome. Because right now- Holy shit- pretty much sums things up!

Stay safe everyone! To Robbie's buddies- I hope to get some FaceTime or Zoom  calls in soon- he misses you!!

Student of the month

The letter came in the mail. The letter was from Robbie's school addressed "to the parents of."  I assumed it was another IEP meeting or a reminder about something I had forgotten. Your son Robbie was chosen as student of the month. I immediately felt proud and then nervous. How would Robbie handle sitting through an awards ceremony? The kindergarten student of the month will go first, making 7th grade next to last. We discussed the ceremony and what to expect, a little bit.  For Robbie anxiety is very real so you can't over explain or under explain. The balance can be challenging. The school did a great job of talking through it the day of  and a front row seat was saved for him. We arrived early, as we had the 5 of us and grandparents. The principle had Robbie come up and do a dry run with him before it began or was too crowed. Robbie had to be reminded he could smile- and he did - with the biggest smile he could make. Literally, the biggest slightly awkward looking smile possible.
Game time arrived and Robbie was amazing. He listened to the awards being given and clapped for  the other students. Once it was his turn,  he stood with the principle , accepted the award and smiled for the camera. The next morning as I said Good morning to him,  he replied " the man ( principal)  gave me the paper and I did it! I did a good job!!" Names can be difficult, even those you'd think he should recall easily.

                                       Yes you did Robbie. You are doing a good job.

Does Robbie know he has Autism?

The conversation started with a question from my 6 year old so. " Mom, does Robbie know he has Autism?"  I've actually been asked that question before but never really knew how to answer.  Autism by definition is a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior.
By definition he most likely does not know he is on the spectrum. Out of curiosity,  I asked him. We looked at a pin I have. It's a small puzzle piece with the word AUTISM on it. I have it tattooed on my wrist as well. I asked Robbie to read it. He struggled to sound it out- as he does with most words.  I repeated it back to him and asked if he knew what Autism meant? It was as if he'd never heard the word before. Autism is a word we use very often in our house, so I was a bit surprised. I explained autism in the simplest terms I could. When things are too loud, or too busy or just too much. He nodded that he understood and then pointed to the red paperclip on my dresser, next to the pin and my jewelry. "This doesn't belong here. It's a red clip paper. Is it broken. Can I have it? Oh, here's another red clip paper. this doesn't belong here. Can I have it?"  And that is where the conversation ended.
The red paper clip or clip paper didn't belong with my jewelry and the autism pin. It might have been bend or broken. But it has a place in our home and Robbie wanted it just the same.  So the answer is , no Robbie does not know he has Autism. And it doesn't matter at all.

The Middle school dance....................................

The Dance............... The middle school has many, many, many dances each year. Robbie loves to dance. He loves music. He loves watching others have fun. Robbie can also tolerate loud music- which is unusual for many on the spectrum. Getting Robbie to attend a dance has been such a struggle.  His teacher has asked so many times- aides have been waiting- just in case.  All the pieces have been in place- yet it has still been such a challenge to get him there.
For my 11 year old daughter, the dances have been filled with anticipation, pre-dance pizza and post  dance sleepover. Typical middle school girls.  Many of Robbie's peers have also enjoyed going to the dances. They may not have had  pre or post party. They may not stay for the entire 2 hours- which Lexi has said is an hour too long... but they enjoy going.  Eight dances have passed and finally we decided this would be the one.  Halloween - Robbie's favorite holiday-was not an option. While he loves all things Halloween by the time it actually rolls around- he's completely overwhelmed- ( this year was the first year he made it trick or treating - more than 3 houses) . The Christmas dance was formal- no shot.  Tonight was the valentines dance- a few heart decorations, but low key. Again- the teachers asked.  So-  again we talked to Robbie. And again.  And again. He agreed to go- which made me so happy. " I will go to the dance party, I want to go to the dance party."  I knew he would have a great time- if we could get him there. Fast forward- pre dance- complete melt down. " I'm not going to the Dance party- it's the middle of the night!!" ( It is 6:15pm and dark- but its all relative - especially to someone who doesn't really sleep.)
7pm -  After pepperoni pizza and more discussion about he doesn't have to stay or dance- Robbie is out of pajamas- ( the after school wardrobe) and dressed in regular school clothes. While letting us know- he is NOT going to dance- at the middle school dance- he allows Dad to take him.  A few moments later Dad returns home and I get a text from- a friend- who happens to also be an aide at school- another reason we are so confident in this experience. She tell us Robbie has said he is NOT dancing..... and sends a video of Robbie... dancing- with a giant smile on his face. We had agreed to pickup an hour early but I continued to receive videos of a smiling, dancing , 5' 9" 180 lb- 13 year old boy/ child.  He looks so happy- it makes my heart melt.  He asks to stay longer. I begin to  feel guilty that I haven't pushed harder to get him to go. I think-sometimes we need to be forced out of our " comfort zones." 
I pick Robbie up @ 8:30pm. 30 minutes later than anticipated but 30 minutes before the masses head home at 9pm.  I get a text from Lexi checking on the Robbie status- as she always does. Robbie is escorted out of the dance by another aide/ friend- who I also feel so lucky to know is by his side many days. Robbie is happy. He tells her loves her.  He genuinely loves the staff at Neeta- they are amazing.  We drive home. Robbie begins to get agitated. The agitation escalates. There is no " reason" for the agitation- it just brews..... I had heard he had taken pictures at the dance.  I asked to see them once we were home.  He showed me while I was driving- smiling pictures of himself and friends. I  asked if I could see them again once we were home- to get a better look. Emotions escalate.  As we pull in the driveway Robbie is yelling.  " You can not see my phone, I am not happy" And many other comments- that do not always make sense- but are filled with rage.  0-60 emotions of a teenager- 0-180 emotions of a teenager with autism.
The next hour was filled with tears, yelling and emotion. The dance had taken a toll on Robbie. He was overwhelmed when he arrived home and had a difficult time processing his emotions. It was.... awful.  Tears shed- not just from Robbie. Watching him unravel is brutal.  Attempting to explain it to  Timmy , his 6 year old brother is hard, especially after Timmy laughs because he really doesn't understands it.- and I yell at him to stop.  The additional phone call check in from his sister- who hadn't witnessed any of bad behavior tonight (yet she knows him and whats to come, sometimes even more than her parents do )- seems even harder.   And then lying - saying that all was great!- She should not worry- knowing it would be fine- in time.
Here is an example of the language of Robbie  " I'm not feeling good. What's wrong with me??  So the hearts and the music is too much and I can't dance in front of everyone but I did it and its too much. And... my arm hurts because I broke my arm when I was a baby( saw a picture of himself in a cast 3 months ago from when he was 2 years old) and I can't get lost like Castaway ( the movie)-  I love Castaway but I don't want to get lost on the Island. And -Oh No - I didn't take a shower this morning. and why am I so upset???? I'm so sorry ".. and so on. The tears flowed for an hour at least. It was incredibly hard to watch. Yet- I know he had a good time. I know it was good for him. But afterwards I heard all the stress and anxiety he felt. His final comments before sleep "i'm not mad, I'm happy because I did it- I did the dance and I'm sorry i hurt your feeling- but I'm happy because I did it- I did the dance."
I wish I could share the video of the happy dancing boy from the dance and the video I took of the distraught, emotional boy who arrived home after. Parenting is so hard. I know that when Lexi goes to travel Basketball- its hard. She feels out of her comfort zone. She doesn't go to school with any of the other girls. It can also be physically taxing for her. Yet I am very confident it is good for her in so many ways. For Robbie- I'm  not sure  the emotional toll of the middle school dance was worth it. Or if  I'm being honest-   it was just too hard for me..................................................................................

Why the tears fell today

Time flies- and there have been many things to write about - but life gets...... busy.  We get into a comfortable- yet hectic groove. 3 kids- 2 working parents- never enough time... "yada yada ". Then something sparks. Today it was the Biannual neurology appointment for Robbie.  Today I could not control the tears. 

When we heard the diagnosis of Autism Spectrum Disorder , Moderate- I knew Robbie would never be a star athlete or honor student.  I read all the books about "healing" and while we tried all the diets, hours of ABA and every additional therapy we could- my brain knew- sort of.  BUT ...deep down- I thought  - he would excel beyond everyone's wildest dreams.  To be clear- Robbie is doing really well. Robbie is doing amazingly well , for Robbie. So that's why I broke down in the neurologist office this morning.  She said the things I have been saying but hoping would change- for years.  For Robbie, daily life can be exhausting, it's like living in a foreign country where you don't know the language. You try to communicate for a while and then give up, because its too much. He retreats into his head, where its safe. There is a limit. For years we've had additional hours of ABA therapy, but at this point we have paused.  The neurologist agreed that we have - at this point - capped.  That's not to say other outlets would not be beneficial. Physical activity and social interaction is extremely important.

Robbie does try. Many times he amazes me. We try a sport or activity and he loves it- or so it seems. The issue arises when we try to repeat that. He doesn't want to return. Boxing, Basketball, Soccer, Bowling, Swimming, painting....etc.  To be fair, it gets harder to take him to an activity, even when you know it will benefit him, when he's screaming "I DON'T WANT TO GO" and you have another child- with their own activity saying- " I really want to go." 

Today we discussed a few options with the neurologist. I took notes , as I always do. I tried to be positive , as I always do. The notes were the same, as they always are. The same groups or organizations.  Have you tried special Olympics??"  I nod and thank her. I know she is genuine. One of the best we've seen in the last 11 years. And yes we have tried special Olympics- twice - with horrible outcomes. And yes I will absolutely try again.