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.
Sunday, February 23, 2020
Sunday, February 16, 2020
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.
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.
Friday, February 7, 2020
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..................................................................................
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..................................................................................
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