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)

Sensory regulation

I have been feeling proud of my autistic 10 year old. He's always been incredibly sensory seeking. As a toddler he would touch walls as he walked. That binky( pacifier) stayed around much longer than it should had- it literally disintegrated........ Those years from the age of 3 to - ---well now , at the age of 10, have been a constant struggle of occupational therapy and doing everything we can to keep Robbie "comfortable in his own skin."  Recently, Robbie has discovered how to get the sensory input he needs to feel better. He takes multiple showers or baths. He swings on our playset and/ or hammock. He jumps on the trampoline. He rides the stationary bike in our living room. He walks on the treadmill. He does yoga, copying the moves from a book his teacher had put together 2 years ago. He snuggles on a large bean bag from yogibo. Most of the things mentioned above- he does multiple times a day, for short bursts of time, every single day

He has also discovered a love of "writing stories". He will draw a picture and then write a few sentences to go along with it. He struggles with spelling, so he asks how to spell every word but the yearning to read and write is there. That in itself is amazing.

There are still moments of discomfort for Robbie. We went to our favorite lunch spot yesterday.  there were 3 mistakes made. 1) We sat in a different section/type of table. 2) The football games were on and the volume was very loud. 3) His food was late- delivered well after everyone had gotten theirs.  The first 2 mistakes we should have anticipated but the 3rd could not be helped. The best part of the day was Robbie was able to manage through all 3 obstacles. He needed multiple extra tight hugs, deep breathes and a shared chicken nugget while waiting, but he survived. I was talking to a friend later in the day who had borrowed our weighted blanket for her child. As I explained the events of the day it became even more clear. Really- we all survived. 5 years ago, I never would have thought we'd be here.

I know I'll never fully understand my son who has autism, but I also don't get my 3 year old or my 8 year most of the time!! The thing I do know is

         How much I love this child- I can not count the ways!!!

What makes you happy?

I've often written about one of the beautiful aspects of autism - you know when Robbie is happy. His smile beams from ear to ear. You also know when he is angry. He grunts, yells, and now sometimes will tell you, "I'm angry!"
 Robbie is enamoured with "officers" as he calls them. Anyone in uniform, but especially police officers. He likes to talk about the officers putting the bad guys in jail.  Sometimes he mentions he is going to put Timmy in jail as well- usually a sentence that Timmy, in the middle of the terrible 3's, has earned. While at lunch yesterday- 2 police officers who know my husband from working at Lenape high school events came into the same eatery.  Rob said hello to them and made a bit of small talk. Robbie had his back to them but you could tell by his expression- he was feeling excited. He glanced at them a few times and shyly turned away. This was a celebrity sighting after all!!As we were finishing our meal my husband had a brilliant idea. He quietly explained Robbie is on the autism spectrum and has a genuine love of police to the officers and asked if they would mind taking a picture with Robbie. They happily agreed and honestly made our boys weekend! This picture speaks a thousand words as they say- even if Robbie doesn't always have quite that many in his vocabulary. I am so happy to be able to post a happy story- especially these days with all the unrest across the country. We want to say Thank you to the officers for all they do to keep us safe and how they put a big bright smile on Robbie's face, and mine :)

My heart smiles

I felt myself tear up. As I was sitting in a neurology office- waiting for a signature for the samples I was leaving for work. I watched a man sitting quietly with an aide. He was older. His hair was grey and missing in the middle. His companion was a home health aide, or nurse from the facility where he lived- I assumed. She had scrubs on and was filling out medical information for him. She let the staff know that he couldn't answer most of the questions that were asked of him. He whispered when anyone spoke to him- after all we were in a doctors office.  I smiled at him. He looked at me for a moment and then went back to glancing through a magazine. She was kind to him. That made me happy.
This morning I was explaining just how funny Robbie is. His sense of humor is phenomenal! He surprised me the other day as I was exiting the bathroom by jumping out of my closet to yell "boo" and then exploded into laughter. He's been watching a new movie- over and over again- as he tends to do- and talking about the movie with us and his siblings. Transferring the "butt" humor to his siblings as well- because butts, farts and boogers are hysterical- to all 3 of them, and sometimes me as well. His smile is contagious and one of the most beautiful things in the world as it is pure and genuine. I am truly enjoying being around him. He dances with us after dinner when we have family dance time. He is helpful, especially with his little brother. He acknowledges other kids by telling them what a great job they did jumping into the ocean. He wants to be with people. He went with the flow on our long vacation- where some parts were totally new to all of us. He is a joy to be around. I do credit Abilify for a large part of that, as the winter months before this medication were almost unbearable. He was agitated and aggressive. Very much out of character for our sweet boy. The boy who will most likely hug you at a first meeting. Now we know- he needs this medication. We know how to plan for situations. We know when to push him and when he needs a break. He is happy. At least for now, and that makes my heart smile.