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.

OMG!! Robbie's 12 :)

Wow! Again- its been months since I last posted. Life has been very busy with a new - full time - job and the usual busy life of 3 children. But-- Robbie - wow! In all the best sense. Robbie is back in our home district and has flourished. He rides his electric scooter to school along side his sister and friend on bikes. The kids have been welcoming and kind, which is a testament to the wonderful town we live in. Robbie's language and reading ability have increased! He still struggles- especially with reading- but he is sounding things out- in a way he had not been able to before. To put it in perspective - Robbie can't read a book on his own- not even a preschool board book- but with assistance he can read words. He is  great at using his ipad to help him. He'll start typing and autocorrect will find what he's looking for. Using the tools that are available is a large part of Robbie's life skills.
Last week - Robbie's behaviorist and I were talking about his birthday party. This year - Robbie was very specific. He wanted his 3 friends. He wanted to make slime, eat pizza and jump on the trampoline- with flashlights. Ms. Becca ( his behaviorist) asked Robbie who he was inviting to his party? Robbie paused and  said " I don't understand what you are saying."  Ms. Becca rephrased her question- slowly- to ensure he heard. Robbie answered. That was a huge milestone!!  The world moves quickly and sometimes that is hard for Robbie. In the past , there would be meltdowns. Sometimes we did not understand why. If Robbie can communicate- " I don't understand" and can understand once we rephrase and slow down....... HUGE!  Another milestone- I asked a quick question, not looking at him- and he did answer.  Milestone number- I've lost count- Robbie made himself a sandwich.  To most, sounds like no big deal. Robbie has never eaten a sandwich in his entire life.  He would eat lunch meat , cheese sticks, and types of bread separately, but never together. He tried tortellini. He didn't like it- but he tried. He looks at foods and thinks about whether he wants to try them- instead of immediately screaming NO!. Maturity is definitely part of this- but - wow... selfishly- it makes life so much easier, AND MORE FUN!!
Lastly- Robbie's birthday party. He invited his 3 friends. One- a friend he's had since preschool who is on the spectrum ,much more social than Robbie, and the first one to arrive- as he was ready to party!!  A complete joy to have who loves life.. A new friend he's made this year at Neeta who has down syndrome and is one of the most pleasant kids I've ever met. He struggled to get on the trampoline but was content to sit while his friends jumped. The dance moves this boy had - to Pitbull - no less- were phenomenal . And a friend he's had since kindergarten that I sometimes refer to as " his person." While they have differences, they have more similarities and really balance each other out. This is the friend that went upstairs during the "dance" portion of the party due to loud noise but told Robbie to " Relax"  when he was freaking out about loud noise during the " happy birthday" portion of the party. They have a connection. A true friendship. This crew made my heart happy because they make Robbie happy. He talked about " these boys, my friends." I also have to thank my sweet girl Lexi and her friend, who helped with the making of the slime.  Not an easy request, especially when you're not sure who - in a sensory sensitive group- may need extra help- or not like it at all.
Bottom line is- Robbie is thriving.
Happy,learning, making new friendships, while continuing older ones. In our community- where he has been welcomed. Again- my heart is happy.

First day.... What is Robbie capable of?

I wrote part of this blog over the summer- never published it. Here it is!

One of the challenges for Robbie starting a new school is no one really knows what he is capable of. IEP's are very hard to read and they don't give a complete picture of a child. Honestly, I don't know what he is completely capable of. In the last meeting I had with his new school- his home district- I was asked about his "tolieting." Is he able to go to the bathroom on his own.  This question caused some concern. Of course he can go to the bathroom on his own- but how are they supposed to know that.  When we last changed ABA providers- the woman in charge didn't think Robbie was verbal. Of course he's verbal- but how was she supposed to know that. At his new school he just began extended school year. They didn't think he could read. This is a tough one. Robbie can read things he's memorized. He can read some things at school but can not read them at home. He can read some things at home but can not read them at school. He is just beginning to sound out words phonetically and it was suggested by our behaviorist he may be dyslexic. ( His sister has dyslexia so I wouldn't be shocked.) The exciting part is that Robbie really wants to read. He loves to write and illustrate stories. He loves to type on the computer and make files on his ipad. It is full of screen shots he steals from movies. He also continues to speak about movies, using movies dialogue in place of actual language- sometimes appropriately, other times not. Many times Robbie is speaking to himself- but its all movie lines. You can ask him- "Robbie , what movie is that?" He will tell you 95% of the time.
For Robbie's first day of summer school at Neeta, his behaviorist made a social story for us to use with Robbie. Robbie is very visual so social stories help him to picture what is going to happen. He has extremely high anxiety and I imagine much of it is due to not fully comprehending things that go on around him some of the time. Some days I feel like I live with a child whose English is a completely foreign language. Our world moves fast and he has trouble keeping up. I am constantly reminding myself to slow down- slow my speech, slow my actions- slow and steady wins the race, right?

Fast forward to the second week of school. I hope I am not "Jinxing" things- but Robbie has adjusted so much better than I imagined he would. He loves going school. Yesterday he told his behaviorist that he learned about dinosaurs in school. She asked specific questions about different types of dinosaurs, what they eat, what they look like. He answered every question. He's engaged! He loves riding his scooter to school, along with his sister and a few friends who are biking. They are going on their own, which gives him some independence that I imagine he wanted, as an 11 year old boy.  No more waiting for the bus every morning! Fresh air to start your day! The teachers and aides have been wonderful with communication and making him feel welcomed.

                     Welcome home Robbie! We are so excited to have you back in the mix!

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I'd like to introduce.......... ROBBIE!

It has been months since my last post. The "radio silence" had nothing to do with lack of material- only computer issues and honestly - a lazy, tired mama. What has been going on lately? Big news at the Hummel house. Robbie will be returning to our home district in the fall. The last time he was enrolled in our district was pre-K at the age of 3 old. At that time we were not completely aware- yet not completely unaware of the challenges that laid ahead. The whisper from a teacher near and dear to my heart " you may want to take him to a neurologist for an evaluation" pushed us in the right direction. Robbie was placed out of district shortly after the autism diagnosis. The services he has received have been very good, yet the placement options for next year were not ideal. He has aged out of his current program. We held him back a year as there was not a good alternative. This year Robbie has grown and matured in ways I couldn't have imagined. Yet the classroom he is in is less than ideal as he is the oldest there and I don't think they have challenged him.  Next year- fingers crossed- our town will meet Robbie.

We spend a great deal of time at the lake. My children love to swim- especially Robbie. The water is his happy place- due to the sensory nature of being engulfed in h2o. Robbie He doesn't have many friends- with 2 exceptions. One is a friend from his current district who is longer at the same school. This boy and Robbie are the closest I've seen to true buddies. They enjoy many of the same things- movies, ipads, swings and snacks! They giggle together. They play. After an hour and a half they part ways- as each has had enough. So very different from my 8 year old daughter - who can play for days (literally) with her besties. Even my little one will stick it out for well over 2 hours- depending on how tired he is. Robbie- no less than 1 hour- no more than 2- that is even pushing it.  His other friend is a local friend- and fellow laker. They have known each other since pre-k. This friend ran up to him yesterday and gave him a big hug. Next he tried to introduce Robbie to his other friends. This friend had a group of boys he was playing with. They were throwing a ball, splashing each other and laughing- as most 11 year old boys do. Yet Robbie went his own way- simply enjoying having the water up to his neck. He did play with his sister a bit- but that's about as far it goes.  It's interesting to me to watch Robbie. He likes to be around kids at the lake but rarely plays with them. To be honest I'm not sure if Robbie struggles with interactions or simply prefers to observe on his own. It's not a conversation we're able to have. I did notice some kids checking him out on Saturday while we were at beach 3- we normally are beach 1 folks- purely out of distance. I always get tense when I see kids or adults staring at Robbie- my natural Mama bear defenses go up- but this weekend I saw something different. The kids are probably just wondering who he is? They've never seen him before- and we live in  a very small town. My hope for the the new school year- at our local school- is for kids and adults to meet Robbie. To get to know Robbie. To understand Robbie. From that- I know- they will love Robbie as everyone who knows him does.  :) ( Says the proud Mama)