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.