Emotional Hit and Runs

Awareness. Perspective. Empathy. Understanding. Educating. These things are some of the reasons why I choose to post on my blog. My life is one that happens mostly behind closed doors within my home. I choose to share certain things in my life that are of large significance. Things that I share, I believe, can raise awareness, educate, inform, and basically shed light to me even existing. As bluntly as I can state it, my posts are the only way that many people know anything about me anymore. Even at that, it's just an incredibly small fraction.

I don't post very often. Why? Well, for one I don't have the time in the day or energy by the time I have a moment before I go to bed. Second, it usually takes me a few days to complete one post because I never have a chance to write in one sitting. Third, larger events are the only ones I usually share. I feel like posting too often would give people the impression that I am seeking something other than awareness, perspective and understanding. I want people to look at the autism community and all the people and roles within it with empathy, understanding, and with an educated perspective. I am looking to inform and educate others based on my life and my own personal experience with the role I have in the autism community.

 Now with that being said, I want to explain as to why I titled this post the way I did. Let me define for you what I mean by an "Emotional Hit and Run." What I mean by this, is that when I say I welcome conversation with my posts, I do. I truly do. A conversation is that in which people have back and forth comments either verbally or via internet to enlighten, educate, shed perspective and speak their thoughts freely to one another. A face to face conversation can be hard to have with me due to my everyday life. I don't get time to talk on the phone, I hardly have time to text (and honestly, what can be accomplished in a text anyways) and if you do want to have a face to face conversation with me, it has to be at my home. My life right now is ran by routines, stability, predictability and above all...others in my home requiring every ounce of my energy of support. I am fully aware that making the time and effort meeting me all the way is difficult. I cannot even say that I can meet you half way on setting up a time to hang out or chat. It's just life for me. I accept this and won't try to tell you I can meet you half way on relationships outside of my home because truthfully, I cannot. I am consumed with needs that have to be met inside my home and they will always be there. Right now, they are very strenuous on me and I know with time, needs can fluctuate. I can tell you right now, I will always be needed to a larger and longer degree because my son is autistic. When one challenge subsides, another one rises. Sometimes the shifts are for the good. Sometimes for the worse. I will also tell you that my responsibilities and energy needed to help my son succeed and live a happy life are extremely draining at times. I am a realist about his needs and abilities. I do not sugar coat nor do I take a negative tone to them. I am real about them and real about possible outcomes that are ahead in so many aspects to our lives.

Now, with all that being said, the 'hit and run' metaphor comes into play when someone drops a bomb on me with a comment (doesn't matter how its delivered via face to face or internet) and then does not proceed to hear insight to what they have just said. Either because they do not want to truly absorb what my follow up response will be, they do not want to be educated on my perspective or reasoning to their comment, or they simply walk away or talk over me and change the subject. Is it because people think I am seeking sympathy? Feel that I just need to suck it up? Feel as though I am embellishing for a dramatic effect? It feels to me just like my title suggests...it's as though I was hit with a comment intended to raise emotion in me and then flees from the response. I want my posts to raise awareness, educate, and shed light to a community which is mostly lived without a true perspective or understanding. As a parent in the autism community, I am devoted to helping my son and supporting him and my family because of his needs. This is a role more consuming than one of a neurotypical child. There, I said it. When your child wanders away from you in a store or yard, of course you will have an instant panic attack. But when you are a parent of an autistic child, a part of you dies. Your energy is stripped from you and you become lifeless. An autistic child who wanders has ZERO, let me repeat that, ZERO safety awareness. They run through traffic with no thoughts to themselves, they are not looked upon as needing help because autistic individuals have wandering issues usually for their entire lives. When you see even an older child around P's age out walking down a sidewalk or running down a road, you typically wont think to dash to intervene. When an autistic person wanders, they typically cannot tell you their name, who their parents are, where they live, or can even communicate at all. Now tell me, when your child wandered away from you when they were little, was your first thought about how they could be already in peril danger or how you are told to first check all bodies of water near your home? Most autistic individuals go straight to water and I can tell you, the outcome is usually a tragic one. An autistic child or adult usually does not understand the "stranger danger" aspect at any age either. I could keep going and going. And once again, I am going to make this perfectly clear, I do not assume that everyone knows these things. That is why I am here posting my experiences or thoughts so that it may shed light to people I know about myself and the autism community as a whole. I welcome the back and forth conversation because the way I see it, it is shedding light to a world that is mostly lived behind doors. Behind gated yards. Behind ABA center hallways. It is one where being out in the community and events can be traumatic, overstimulating, scary, etc for all involved. Sometimes these issues can be worked through. Sometimes they cannot. But when I feel that a one sided conversation is a 'hit and run' for me where I cannot voice my thoughts or rationale in regards to your comments, it's like being hit by a car and seeing the other person who made the comments simply walk away unscathed. Let me tell you, I dont have energy to waste. It also goes for others who have similar situations who may state their experiences or thoughts. When someone creates a reaction in another person who has perspective to share with experience, it may be easier for you to leave the conversation, but not for the other person. They too would probably feel like they had an emotional hit and run. When something is so dear to them, there's no such thing as truly detaching from the emotion that arose.

If you want to know more, ask me. I welcome it. I want to educate others. In order for me to do so, I need an actual conversation. Otherwise if you are looking to make a remark of how I am not doing something right, not enough, blowing something out of proportion, seeking attention or sympathy...keep it to yourself. I never ask nor do I want sympathy. I too want support from people I know. It's hard to say that I even have many real friends because of the life I have. I have come to terms with this and I wont sugar coat it. Writing random posts on this blog is one way for me to share my emotions and experiences without that 'hit and run' feeling.

With my last post, I have had a large response and most have been down-playing the true nature of the event, stating their opinions, telling me to chill out and how its just like every other parent, etc. But where I take issue with that, is when I am not allowed the true opportunity to respond. That is why I am doing it on here...once again on a platform in which I feel my whole feelings can be expressed without interruption or simply changing the subject, walking away, or leaving the conversation entirely. When you feel like your opinions need to be shared, I am open. But you also have to be open to my response and you need to hear it to the fullest extent. With me, there are never one word answers or simple explanations. Hell, I have to be an interpreter for P to everyone and let me tell you, deciphering to others why he is screaming, "GLUE!!!! GLUUUUUE!! GLUE!!!!!" and having a meltdown when asking him to sit wont be a short explanation. Or trying to think of a respectful but yet defending way to P in public when old bitties say, "He's too big for that stroller. I cannot believe you wont just make your kid walk. He's gonna be a toughie when he's a teenager. He gets what he wants now, just wait til then Mom." Yes, this was a real comment made by some hag at Menards. That is an emotional 'hit and run' as well. Do I go off on you at fricken Menards? When and if I do, it wont matter anyways. That bittie is never going to truly listen nor absorb any response I give. Still, it is exhausting and it leaves me angered beyond belief. I cannot simply 'shake it off' or 'not let it bother me.' It does and always will. I have outlets that help me not go insane on these random people. One of those outlets is on here. A place where my thoughts can be fully typed without interruption, without stares, and without people leaving me not wanting to listen. I mean, if you wanted, you could just not read my posts at all. That's fine too. But at least it isn't visible to me and more than likely you will keep your opinions to yourself then anyways. That's because you wont have any...because you wont know what I wrote about to begin with. That's also fine.

So in closing this post, I am going to say again, I welcome the conversation...not the random opinions or comments made without wanting to hear responses. I am in this as an advocate to my son and that will never waiver. That will never change. Until my dying day I will be his advocate. I am also my daughter's advocate in all of this as well. Its not easy developing and growing along side someone who is so different from you. Different but not less. So with this post, please feel free to comment, give perspective if you are also in the autism community, give a perspective seeing it from the outside, etc...feel free to ask to come over and see P first hand and our lives first hand. I will tell you again, to meet with me face to face, you will have to do this anyways. I cant meet even halfway on friendships and I acknowledge this. I am at the acceptance, empathy (NOT sympathy) and understanding of others. That is why I write. This is my life. My beautifully complex, routined, secluded, rewarding, etc, etc, life. I am open to sharing about it but you too must also be opened to hearing it.

One Window Opens, Another Gate Closes

"Trampoline with Daddy!" Parker says yesterday evening while in the backyard with me and Quinn. I yelled for Tim in the house so elated that Parker was asking to play with him. Parker was laughing, making eye contact, making verbal requests....I was sitting in the backyard next to the trampoline thinking how odd it almost seemed to me. Surreal. We were having a good  ol' run of the mill family evening. Just like any other family. Just hanging out in the backyard of our house playing. It all stopped...including my heart in one instant.

Now for the last almost year, Parker has been in ABA therapy. He has been absolutely thriving in that type of education setting. He has Behavioral Therapists (BTs) come to our home about 35+ hours a week to work with him 1:1. When we began, he showed no compliance to any requests, no real way of communicating, meltdowns daily, etc. He wasnt able to transition from room to room or floor to floor in our home. He wouldn't go outside. He could only handle looking out the front picture window at the outside world, he hadnt gone outside in three years. He was my Boy in the Window.

A few weeks ago, we began trying to get him to tolerate being in our backyard and outside with his BTs. They started by having him tolerate standing by our front door without a meltdown, then with the front door open, then with the screen door open, then on the first step, then to the swing set. This process took about a month. I knew that Parker would no longer be my "Boy in the Window" anymore. He would be my boy out in the world. It was thrilling to have a new opportunity and confidence arise in Parker, but also it was terrifying. In the last three years, I didn't have to be as anxious as I am now about him wandering away from the house. I always have watched him like a hawk because he is very unpredictable. I never knew if today was the random day P would decide to venture outside. That day didnt come on his own, it came with the intervention and patience with myself and his BTs.

Yesterday when I was so elated with P requesting to jump with Daddy, I sat there thinking how far he has come. I was reflecting about how wonderful ABA therapy is for Parker and our family. I then thought about how there are still so many challenges and so much unpredictability in my everyday life. Its hard to focus on any emotion, really. One minute I can be on cloud nine and the next I can be terrified. Little did I know, last night was going to be one of those instances again.

Tim came out in the backyard and started jumping with P and Quinn. I took a few pictures and couldn't help but just stare at the pictures. Everyone had smiles on their faces, they were all playing together. Tim grabbed a rocketship nerf gun and pounded it into the ground. Parker watched the rocketship fly into the air and laughed. "Rocketship!" he said. Tim looked at me and was so happy to see P wanting to play. Tim looked at me and said, "Im going to go inside and grab the new nerf gun we got today! P will love it!" I said for him to grab it and that it was right inside the front door. Tim walked to the front yard and Parker immediately followed. I saw P follow Tim just three feet behind him. Literally, being Tim's little train car. I looked over at Quinn who was playing in the water table. I smiled and looked at those few pictures on my phone and smiled. Tim came back within one minute and said "Where's Parker?" The words I loathe. I immediately launched from my lawnchair and said that I thought he went with Tim into the house with him. He followed Tim literally right behind him. Tim didnt see that P was behind him. He was so excited that P was interacting so well. Parker didnt even drag or shuffle his feet when he was following Tim. Usually we can hear P walking because he usually does this. Not this time.

Tim and I ran to the front yard. No sight of Parker. He wasnt inside. He wasnt in our yard. He was gone. Tim looked far down our street and Parker was barely in sight down our long residental street. I gasped, dropped everything in my hands, my heart stopped. Tim began running at full speed to reach Parker who was about 1/4 mile away from us...who was still running. I screamed helplessly from our front yard, "PARKER! STOP! STAY BY ME! STAY BY ME!!" That is the verbiage his BTs have been using when he is outside when he starts to wander. My hands covered my mouth. I felt utterly helpless. I had to trust that Tim would reach him running in the middle of our road. I had to stay back to ensure Quinn was also watched and safe. I stood there in my front yard looking down my road thinking how my absolute worst nightmare was true. It was here. It was happening...and still running away from me. He was wearing a black printed shirt and black athletic shorts. I began thinking about how if Tim had been in the house for another 15 seconds, Parker would have been out of our sight completely. Parker would have been wandering and running with no safety awareness...in all dark clothes at 6:30 at night. I stood in my front yard screaming still, "PARKER STOP! STAY BY ME! STOP!" No response. He kept running further...running further from me.

Tim caught up with him, and my heart sank. He was in Tims arms. He was safe. He walked back to the yard with him and I immediately said in a distressed voice, "Parker, stay in your yard. Always stay in your yard. Stay by me. Always stay by me!" P immediately became upset because he knew I was upset. He was not aware of why I was upset. When I am around P, I have to buffer all my emotions because if I raise my voice or yell, wherever he is in the house, he begins to cry and have meltdowns. He's very sensitive to tone and emotion rather than to the actual words being used. I calmed him and had to shut off my emotions about my nightmare so that he didnt have an uncontrollable meltdown as a result. I was in shock. True shock. I went numb.

I looked to Tim who was shocked as well. I said, "We were 100% attentive. We did everything right. No one was at fault. We assumed the other one had Parker. We both had queues from each other that Parker was in the other's care. It was human error. We are only human and cant change that. We need to have something that is physical that wont ever waiver. Wont ever move. Wont ever be forgotten about...we need to complete our front fence and immediately." Tim nodded. I was still physically shaking.

We got the kids down to bed and we were still numb to what had happened. It was a mix of so many emotions. We went from one extreme emotion to the complete opposite extreme emotion. We were in a daze. Just as I was sitting with my head in my hands alone in the kitchen, I saw my Dad pull in the driveway. I had called him right after to tell him what happened. I had always hoped that if P did ever wander, we would go to my Dad's house which is just a few blocks away. Once with his lead BT, I walked with them and we let P lead the way to see if he knew the way to my dads. Sure enough, P biked right to my dads front door. I felt a slight comfort that maybe, just maybe if he did wander, he would go to my dads. I could have a path to follow and find him. Last night blew that comfort to bits. My dad walked in our house and said, "Find a patio and have a beer. Decompress. The kids are already out probably so I can just watch a movie here while they sleep and you guys can leave for a little bit." It was so thoughtful. I was in overload and so was Tim. I thanked him repeatedly (thank you again, Dad). I popped on 'Sharknado' (because that movie is as good as the title portrays) for my dad and locked the door behind us.

Tim and I went to Lions Park by the lake and I had to just sit on the dock surrounded by cattails and water. I saw turtles pop up and swim away, I saw the sunset beaming on the lake, I heard music from the outdoor patios, a mayfly landed on my arm, ...I was by my water which is always my calming spot. I thought to myself about how such a calming spot for me is also my most terrifying spot at the same time. I cannot have Parker near water. God, what if he had wandered and found the lake which is only about two miles from our home?! I forced those thoughts out of my head. This moment was for Tim and I to calm ourselves. It was to find what helps us in a time of crisis...lakes. We walked the lakefront, stopped and had a quick tap beer at Tallys and walked back to the car. We were exhausted and drained.

We came home to the ending of 'Sharknado' which lightened our mood. My dad stayed and watched one more flick with us. I thanked him again over and over. It was just what we needed. After he left, I went to Parker who was safely sleeping in his bed. I kissed his forehead and held his face. I whispered, "Please dont ever leave me again. Please never leave me like that again. I need you to be safe. I need you here." I began crying. I kissed Quinn on the forehead and wished her sweet dreams. I held her face and kissed her once more, giving one more glance into their room. My babes were safe, in our home, in our care tonight.

I dreaded and loathed the day. The day that my boy went from the Boy in the Window to the Boy Alone in the World....he was in the world alone, wandering, out of my care for less than one minute and he was down the street 1/4 mile away from me. Breaking through one barrier for him, closed another. The window that he used to only look at the world from the inside was opened. As a result, we have to construct a gate that must always be closed. A life where he can now experience the world, but be restricted from it at the same time. One window opens, a gate must be closed.

Skates on a Peg

Two weekends ago, my sister came up to visit from Rochester with her hubby Josh and daughter Charlotte who is 4. Emily said that Charlotte has been going ice skating at the rink by their house and suggested we go with them for open skating here at our sports center. Immediately I knew this was a fantastic idea. See, Tim has always played hockey. Since he was big enough to walk, Tim was practically walking with skates on. His dad coached for many years and basically hockey runs in the their blood. Since Tim graduated high school, he has missed hockey and skating so much. With his work hours, he hasn't been able to join a league so the hockey bug got worse. He has wanted to play so badly but with our lives being the way they are, it's made his itch to play pretty bad. As soon as I talked to Tim about the idea of skating, he was so excited. See, he bought Parker hockey skates last year but Parker was not in a place then to even attempt bringing him skating. His sensory issues alone were enough for us to just have wait....wait with the skates hanging on a peg in the garage. Just waiting for Parker. We finally got to take the skates off the wall....

We had my dad, Emily, Josh and Charlotte with us which was not only comforting to Tim and I for help, but also for Parker. We walked into the arena and immediately Parker kept running for the door with his Mama Ducky. "HOME!!! HOOOOME!!" He screamed. My dad took his hand and sat with him in the bleachers while we all got our skates on. Tim first put Quinn's skates on and as soon as they were laced, off she went! It was like second nature to her. Even with her balance and motor skills right now, none of that mattered. She sprung off the bench and went right to the ice. Tim was already so excited. I could see it in his beaming smile and also how fast he laced his skates up.

As soon as we were out there, I helped Quinn on the ice and Tim went flying around the rink. He used to play hockey at the sports center all the time. I think it made Tim think about the times he had no responsibility. No cares really. I would come to watch him play in high school so it also made me think of those times too. I watched my dad and Parker in the bleachers. He took him down and brought him to get a gum ball. With Parker's sensory issues, chewing things calms him. Then he brought P around to the players bench. There's no glass there so it was a great view for P of what's going on in the rink. Also the sensory overload was taken down a peg because there's no glass in front of him restricting his view. My dad pointed to the people ice skating. His cousin, uncle, mama, sister, and dad all skating. Parker has issues with his feet and not taking off his crocs or socks for anything. Knowing this, Tim took Parker from the bench and brought him on the ice with his crocs on. He held him up with his crocs on the ice. He gently picked him up and whizzed off around the rink. Parker's smile went from ear to ear. The sensation of going to fast so smoothly. The chilly air hitting his face. The sound the skates made on the ice. Parker kept his focus on his and Tim's feet. He studied how Tim moved and watched the sketches in the ice move by so fast. Tim took him off the ice to show him he had his own hockey skates. Parker sat on the bench, took off his crocs and said "skates!" Yes, I will repeat that again....P wanted his crocs off for skates! Tim quickly put them on and I watched from the rink with Quinn. She was doing so well herself. I was scared that it was too much for Parker having him take off his crocs and doing skates all on the first time. Tim then came over to me with P held up in his arms and told me he requested to have his skates on. I almost fell over with excitement. Tim kept flying around the rink with P and I stayed with Quinn. She even told me "let go!" so I did. She skated slowly away from me on her own. Yes, these babes have hockey in their DNA. For the rest of the time at the rink, Tim got to mentor Parker with skating. Something this mama can never do. It's something that can only be taught and coached by Tim.

The following day, Tim bought a floor hockey net and set. All day we were shooting pucks in the living room. Parker would say "ice skating!" and bring a hockey stick over to us. We made up a song to help P remember how to hold a stick. Quinn would shoot pucks too. She would hold her hands up in the air and cheer every time a puck went in the little net.

Now last weekend came and we wanted to go to the rink again. Tim has to work weekend overnights but the times for skating falls right after he wakes up and ends before he has to leave. The time was made for us. We invited Tim's family to come to watch and skate that Sunday. Parker and Quinn got right on the ice. Luke, Parker and Quinn's cousin, skated nearby and wanted to help. He skated with us and even showed P how to skate with the large road cones for balance. After a little while, Tim let go of Parker and told him to skate to Mama. Tim let go, Luke skated nearby encouraging him. Parker slowly moved his ankles and off he went. He came skating over to me. All alone. No assistance. Tears of joy streamed from my face. Parker was skating all on his own.

P showed us in these two skating sessions of how much he has come in the last year. The hockey skates are no longer hanging on a peg in our garage. They stay in the back of our car. Just waiting for the next time we go to the rink. No longer are they a symbol of a goal we have not yet achieved. They are reality. They are a symbol of mentoring, coaching and bonding. A symbol of how far we have come and what opportunities we have as a family to be involved in skating and hockey. Watch out world. Quinn and P are coming and will never leave the sport the same after they are done with it.