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.

What color are you?

Sounds like a Facebook survey that pops up on occasion. What color are you? What color best describes your mood, your affect, your true self? INSIDE OUT is one of those movies for us that was an " yes !!! " moment. The movie describes emotions as characters inside your body, which all had a color associated to them. How perfect for someone who has trouble communicating feelings and emotions. At Robbie's school they have developed a similar language of emotion or as they refer to them, zones of regulation. The colors are slightly different than the movie but the concepts are even more in depth. For example the "Green Zone" is good. Feeling ok, calm, focused, happy and ready to learn. There is a picture of the character Joy. She is always happy and smiling. The "Red zone" is as you would imagine, anger,mad, yelling, hitting, out of control. The " Blue Zone" is sad, tired, sick, bored, moving slowly. Robbie has been a champion of " I'm sad!!" While making the sad face motion on his face to elevate the expression and ensure we understand. This has been a fairly consistent part of every day. The "Yellow Zone" is worried, frustrated, excited, silly, loss of some control with a picture of the fear character. The "Pink Zone" shows an image of "Bing bong" who was Reilly's ( the main character in the movie) childhood imaginary friend. Part elephant, part dolphin, and few other animals along with a rainbow flower. This zone is for excellent, outstanding, awesome, imaginary, super. The imaginary term I find interesting as much of the time getting Robbie out of his imaginary world can be a challenge. Yet theses zones seem to work. Robbie has small laminated pictures on a key ring he can carry with him. His teacher said she purchased the figurines to leave his desk. This helps him articulate and understand his emotions. It's all pretty cool stuff and helping our son manage. I am also happy to report the new medication really seems to be helping with anxiety and aggressive behaviors. This past weekend Robbie went to Robs basketball practice in the morning without argument and later went to a birthday party at Pump it up. Two outings in one day are incredible as the past few months it's been nearly impossible to get him to go anywhere other than school, and some days that has been tortuous. He seems to be able to get himself in check more easily. If he gets agitated and yells, he can calm himself down, self regulate. This has been an impossible skill the last few months. Additionally he is more present, for more of the time. He seemed lost in his head more than ever the last few months but over the last 2-3 weeks we are seeing more of Robbie. He is talking about what he is watching on his iPad. Describing the scene and acting it out for us, instead of scripting it to himself. Don't get me wrong, there is still a lot of stimming but I feel we're almost back to our normal. I mentioned to another autism mom friend at the birthday party it has felt as if we are prisoners in our own home. Yes he could be left with a sitter for the occasional night out but we also missed doing things as a family. I missed my Robbie. That is exactly what I said to him at the start of last week. " Robbie, I've missed you. I love you. I am proud for you and I am so happy your back!" As always we are taking things day by day, but for today at least I can smile and breath easily, looking forward to seeing my oldest son after school and getting a glimpse of his day and a warm hug.

For Better or Worse.....................

After the game on Saturday a fellow coach and one of Rob's best friends asked " Is Robbie getting worse?" I had not thought of things as better or worse. Or in sickness and health and for richer or poorer. yet here we are. I will proudly admit I am a fan of "Bachelor Nation." For those unfamiliar this refers to shows like " The Bachelor" or " The Bachelorette." Tonight I was watching the valentines episode that had been DVR'd- because I can rarely watch nighttime television at its regular time. My daughter was watching with me after a rough evening with Robbie. We've just started a new medication and his behavior is still very sporadic. A lot of grabbing, screaming at the top of his lungs, requests for hugs, and demands for things exactly his way. " No mom, it does not go here, it goes HERE!!!" ( 2 inches to the left- for no apparent reason. ) "No mom, don't say it like that - say Robbie why are you mad?" - I had asked "what's wrong, are you ok?"........ As I mentioned before Lexi gets very nervous when this behavior emerges. She is worried that I might get hurt and inserts herself into the situation. Lexi is wonderful with Robbie and seems to have a calming effect on him but every time this occurs I ask her to remove herself from the situation. She is 7 years old. I do not want her to have the additional stress of protecting me added to her already stressful existence. I am her mom. I am the one who needs to protect her. This all brings me back to the bachelor special we watched together. It was a wedding episode. Lexi is a girly girl- and loves wedding shows etc. She had a lot of questions- all beautifully innocent. " Was your wedding like this? Are they getting baby gifts? Are they leaving to buy a house?" As they went they went through the vows- my eyes did tear a bit. " For better or for worse, for richer or for poorer, in sickness and in health, till death do you part." A beautiful memory of a perfect wedding day for Rob and I. One I almost wish Lexi could have enjoyed with us. As a family- it made me think of those vows. Those were not only vows I gave to my husband and vice versa, but vows we gave to our family- not yet created. For better or worse. Yes, this is worse, but it is a part of life. Adolescence/ puberty on top of Autism. We are doing everything we can so I know this too shall pass and it will get better..........:)

A Win for us..... oh and for Lenape girls basketball too.

As I've stated lately, family outings have been nearly impossible. Exception being an occasional trip to PJ Whelihan's- but who doesn't like PJ's. This season all three kids and I have not been to one entire game. We've attempted a few times but Robbie has either been adamant about not going ANYWHERE or I've lost the will to push it after too many futile attempts. Today I decided to try again. The season is almost over and home games are the only times I'll even consider it. I made sure the two little ones were , bathed and dressed, then asked Robbie if he wanted to take a tub. A shower or bath are twice daily rituals as he loves the pressure of the water. Today however , he screamed at the top of his lungs. "No!! No tub! No Shower! Just dressed!! No Mommy!! No Tub ! No Shower! Just dressed!" "Ok Robbie, That's ok. You don't have to a tub. You can get dressed. It's ok Robbie." I replied in my calmest voice- thinking - there's no way I'm getting him out today. He continued to scream "no tub, NOOOO" as he was getting dressed but then grabbed his IPAD and quieted down. I made lunch for all 3- even though Robbie screamed at the top of his lungs "I'm not hungry!!!" Yet proceeded to eat the lunch set in front of him and ask for more. (This is another normality in our house.) I placed his favorite socks and shoes near him and asked that he put them on. He did, without argument!! I explained we were going to see Daddy. He responded "I'm not going to school!! I'm not going to valentines party!! No valentines party!!" His mind was stuck in the argument of yesterday morning as I had to pull him out the door to get on the bus. It wasn't pretty. Yet once he got on the bus he was fine. At school he was fine- happy even. It was a party day! Back to today- after some silence to let him get it out I told him he would not be going to school today and left it at that. The bag of necessities was packed (diapers, wipes, fruit snacks, cookies, skittles, IPAD, IPAD, DS, lollipops, an attempt at sanity...................) I told all three to get coats on and we went out the door. Robbie went out the door. No argument. He just asked to keep his IPAD with him. In the car. Parked. Walked into Lenape. Got to the entrance of the gym after many kind greetings from parent volunteers. I will say it always makes me feel a little better when we are greeted so nicely from people who barely know us- (know my husband really well-but we haven't been around much-) I think they understand the struggle. At the entrance to the gym Robbie continues down the hallway. I ask him where he's going, not realizing for a second he had spotted the candy for sale at the end of the hall. Skittles and starburst are his absolute favorite. He looks at me and says "nowhere" and then it begins. He will not go into the gym. We've made it this far and he will not cross the finish line. Rob sees us and comes out to get Lexi and Timmy into the gym so I can calm Robbie down. I franticly fish through my backpack of stuff to find the skittles. I offer them to Robbie- he of course yells NO!!!! Then looks at them, takes them and begins to eat them. We sit in the hallway as he eats skittles and yells that he's not going in. I hold him close and a few minutes Rob comes back. He bends down and quietly asks Robbie to come into his office in the gym. The other kids are coloring on a dry erase board. After a pause Robbie agrees. He holds both our hands and we walk him into the gym, past the bleachers to the coaches office. He is immediately more relaxed. The game begins, a few tight squeezes, a trip to the bathroom, a few oreos and a little IPAD time. Game over. We won! Really- Lenape did win , but we also won. Robbie sat through an entire game. Not like a few years back when he would sit in the bleachers with an extremely loud band and cheering fans. That seems like ages ago. But quietly with me. Lexi and Timmy were on the bench with the team for a good part of the game- a really big deal in our house! Again, a win all the way around. I'll take that any day!!!

Somedays I hate Holland

Welcome to Holland has been one of those classic pieces of literature shared through the years to those with special needs children. I remember reading it for the first time back in 2008, and thinking- Holland sounds beautiful. Yes, as it states Italy would have been fun, with tons of opportunity, but Holland is different, yet beautiful. Fast forward and today at least, I am feeling a bit differently. Holland has become painful, both physically and emotionally. As my husband stated " sometimes I hate Holland." Recently one weekend was a beautiful snowy winter wonderland. The kids were all so happy to put on boots, hats, gloves, etc to get out in it to play. For Robbie, his excitement began the minute he woke up. He was ready to go. His contentment was short lived however as he gets cold and he refuses to wear waterproof gloves. He gets frustrated extremely easily and refused to go sledding, walking in the snow or anything that was suggested to him. Honestly, the bulk of this weekend he spent screaming in his room, after getting frustrated over......... We have no idea what, and trying to hurt his parents and destroy his door. The day seemed endless as our 2 little ones ( 7 and 2) just wanted to play, both outside and in. Robbie, however ,was miserable. There are many layers to a family. One of the hardest for me is the look on my little girls face as her brother screams, kicks, bites, etc. Lexi is a very sensitive soul already and for her , watching or hearing these outbursts causes a lot of emotional turmoil. Being in Holland makes us feel trapped a lot of the time. Lately regular family outings are difficult to impossible. A few weeks ago I took Lexi and Timmy on a road trip to Massachusetts to visit my parents and sister. Robbie went to his other grandparents for a quiet weekend with them. The trip would have been too stressful for him and the one on one time was really good for Robbie , yet it was sad not to be able to take all three. Medications have been helping a little, but again it's sporadic and yet to become long lasting. Rob attempted a trip to the mall with Robbie recently. It began with a pleasant lunch only to end with screaming, hitting, throwing clothes on the floor and as you can imagine- a lot of uncomfortable glances or faces in horror watching the behavior unfold. Leaving was just as difficult. Robbie seems to change his mind every minute or so. As I've mentioned in earlier posts, I know this a temporary stage, but as I look at my bruise covered arms and think about the panicked expression on my daughters face as she watches Robbie's behavior escalate, I can only pray this stage is short lived. Monday brings a follow up at our pediatric neurologist who is discussing different medications. I look forward to exploring new options and as always am hopeful to get some peace for my poor boy. I know this is harder for him than us. Still, it would be nice not just to go but to take him to Italy. Where he could experience a less complicated existance. And just be..........comfortable in his own skin.

Typical day

Here is a typical day at the Hummel's. Dad is at basketball. Lexi is at his game with her grandparents. Timmy is almost napping with Mickey Mouse and Robbie is in his room intermittently talking to himself, yelling, stomping, hopping and yelling " EEEEEEEEEEEEEEEEE". He had refused to go his Dad's game, screaming he was not going anywhere and throwing his shoes. Just another Saturday. I was patting myself on the back this morning because I've figured out a way to sneak his hydroxyzine ( given on days he is very agitated for anxiety) into Oreos. The mistake was being over confident and trying the same technique with his citalopram, given daily for anxiety. These pills are peach and have coating, which makes crushing them almost impossible. Robbie is too clever and sees it almost immediately. Remaining Oreos go in the trash. I tried again with gogurt,( yogurt in a tube so you eat it on the go) but again he detected it and spit it out. He knows he is supposed to take it every day. We have explained what it is for. Today he agrees to put it in juice but once in the cup he looks at it and spits it out. At night he easily takes his cocktail of clonidine and melatonin, but the citalopram has proven more difficult to get into his system. Since beginning this course of medication his reports at school have improved. Yet at home we are still dealing with the same aggressive, angry out bursts. Today he tried to bite my face........ A totally new one here. Most of the time Robbie is still a loving, kind boy but when the outbursts happen, things change. I know this is a stage and as with other stages, it will end and some new challenge will emerge. We are working with his neurologist, obviously as I listed a few of the medications in our Arsenal above. I left out Ativan , which is reserved for extra tough situations but will be used more frequently I imagine. We are working with his school, monitoring behaviors and discussing plans. We are working with a new home behavioral team. They have developed a plan and it is in the beginning stages of implementation. The plan involves a visual behavioral ladder where Robbie moves up and down depending on behaviors. ( I caught him moving himself up after I had moved him down.) Additionally we have the same sensory issues. Thankfully Robbie is beginning to use the swing in his room more. He has tons of pillows on his bed to hold- and scream into in necessary. He has been holding onto a small silver baby brush and rubbing his hands on it. This may mean we go back to entire body brushing. Which helps to calm Robbie's sensory system, at least for a minute. This child remains to be a puzzle. We are constantly changing the pieces and rearranging the plans. But we do it because he is Robbie. He needs us to be his voice and we love him!!😘