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.

Bittersweet

Bittersweet, that's the best way to discuss my feeling as of late regarding Robbie. So many things are going so well. Medications seem to have extinguished the violent behavior and we have our boy back. He is able to escape from the grasp of his own mind and be truly present. He has begun bowling with a social skills group. We have been able to take family trips to different locations- baseball games, different movie theaters and the mall. Some of these excursions are last minute and thankfully Robbie has been able to roll with the punches. He might even laugh at that phrase instead of melting down because he thinks of the literal meaning and insists he's not " rolling with the punches". Sometimes I think the sky's the limit. But..... There are other times I worry about his future. Robbie has been asking how to spell words and phrases. He loves to write, however lately he has been struggling to remember how to form some letters. The g in Lego for example. He becomes frustrated, and rightfully so. Tonight he was watching me clean the thick film of pollen from our window sills. I had a wet washcloth and at one point I asked him to get a dry wash cloth for me. A simple request. There is a small basket filled with them in his bathroom. He paused. I repeated the question and explained where he would find them. He returned with a soaking wet towel. I brought him into the bathroom and showed him what I was requesting. It seemed to make sense but again how frustrating. Later as I folded laundry in my bedroom he laid on my bed clinging to his baby blanket and teddy bear. He was lying on a pillow he had taken from his sister because it was "comfy." I watched him. All 105 pounds and 4 foot 10, hugging his teddy, throwing his legs in the air, attempting to cover his long legs with his baby blanket. Next year his class is "graduating" from 4th grade to 5th grade. This is considered a graduation because the students typically move to the middle school. It is bittersweet as well because Robbie will not be moving on with his "friends." They are all separating into different classes. His best buddy is moving to a more advanced classroom. One that is not right for Robbie. Another is also moving to a higher level academically than Robbie could handle. A third is moving to yet a different class. The last of the 4, I am not sure. As the boys go their separate ways it is a reminder of how many others have begun in class with Robbie and ended up in a mainstream environment as well. This is not in Robbie's future. I am at peace with that fact- most of the time but have to admit , at other times it still fills with me sadness. The uncertainty of his future. It is a different uncertainty than that of his sister or brother. Not a question of if he will go to college or not, or which sport he will excel at. So again bittersweet is the word I choose to use. A little bitter at times, but mostly sweet as my "little" boy is nothing but- sweet.

Hummel's WIN! Phillies???

Today was awesome! Now, I have no idea how the Phillies did, but for the Hummel's- it was a win! Of course Timmy was his typical two year old self- opening the bathroom stall as I tried to use the restroom (too much information I know) embarrassing for me but typical for Timmy. He was also his wonderful two year self, asking tons of questions and truly loving being out in this big world of ours. Lexi was her typical 7 going on 13 year old self. A bit skeptical, mopey, and already complaining before we got there. But she also didn't complain about her feet hurting, as she normally does, even as we lapped the stadium. She was excited by the "shopping" even if it was for Phillies attire and thought the day was overall - really cool. She even smiled for a few pictures. Robbie was happy to go from the beginning. Rob showed him a picture of the stadium and he asked to go to the baseball game. He was quietly content on the ride there, watching his iPad and looking out of his window. He happily took the free Philly Phanatic hat and wore it, along with his sunglasses all day. ( He's still wearing it) The only time he became agitated was when I pulled him to keep up with Dad who was pushing Timmy in his stroller through the crowd at warp speed. I realized my mistake and slowed down apologizing to Robbie. The day was a bit overwhelming for us all. It was really crowded. It happened to be the birthday of the Philly Phanatic. Our seats were in the blazing hot sun and extremely high up. I am not usually bothered by heights but all I could think about was my sunburned two year old falling over the railing to his death. A bit dramatic I realize, but it was pretty high up there. Even so the day was amazing! I've always known that everyone's "normal" is different but what I realized is how vastly different we all are. A few people I mentioned our proposed outing to were shocked and horrified at the thought of it, yet we ran into others at the game who had not only brought they're children, but their children's friends as well. For me this was such a special day. I got to spend it with four of my favorite people on earth and share a new experience with three of them. Love or hate baseball, there is something special about going to a baseball game, especially on a perfect day. You can smell the peanuts and feel the sunshine. I know my kids won't forget it. And I'll make sure by framing the pictures!!!!

Family

The past few weeks have been interesting..... We are the midst of potty training a very ,very- did I say VERY, headstrong toddler. Lexi was recently diagnosed with ADHD and has begun a course of Adderall to help keep her focused while she is at school. She was also diagnosed with a learning disability- Dyslexia. We have special tutoring set up for the summer to attack that. Yet, as a family- we are in a really nice place. Robbie has been on a steady course of Abilify and hydroxyzine. The Abilify has been life changing. While he has gained some weight, his mood, behavior, aggression has improved tremendously. He is happy and we are able to do things as a family. The entire family- not just some of us. Don't get me wrong- there are still challenges- but lately they are with the toddler. It has really made me reflect on what part of Autism has been the most challenging for me personally. Not being able to do the "normal" family activities that others enjoy. That is what I've struggled the most with. My husband has had an unbelievable basketball season. The awards are too long to list and I know I will miss some- a state championship, coach of the year, most wins ever in the district, proclamation from the township...... yet we missed most of the season. As my husband and those close to me know- I am not a huge fan of basketball- yes I said it! But I was so sad to miss so many of the games to support him. The kids actually love the game. This winter was just too hard for for Robbie. Since the abilify we have gone to games. Last week I took all 3 kids to the awards dinner for the team. We lasted 2 hours until Timmy had reached exhaustion, but Robbie was great. Today we are all going to a birthday party for a good family friend/neighbor. Tomorrow- (gasp)we are attempting a Phillies game. I have no idea how it will go, but the fact that we are at a point in our lives where we can attempt this excursion is awesome. Doing something as a family. That's all I want and I know being with his family is what makes Robbie happy as well.