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.

It's Been A While...

Yes, it has been a while since I have written. There has been so much that has happened in the last year or so since I last posted. Just thinking about it is crazy. The last year has flown by in a literal flash for me.

I had started writing a post a few days ago but ended up deleting it all. I could go into detail about all of the changes and the emotions surrounding them but honestly...I would have to write about ten volumes if I wanted to do that. I could...but writing out some of the things we went through with the school district alone was making me angry all over again and I just don't want to feel that anymore. Believe me, I would love to write all the emotions surrounding how they didn't follow special education law regarding his three year re-evaluation for special education services. Or how the school psychologist wanted P on anti-depressants (yes, at the age of four). Or how she told me that if our pediatrician wouldn't prescribe them, she would tell me one who would in the area where she sends all of her other parents to. Or how she gave P's information to an outside entity without my consent for "emergency help" for P's supposed depression. Or how they wanted P in a mainstream kindergarten class without a para for him with about thirty other kids. Or how I had to keep rejecting the IEP for him over and over until I had to lead a meeting of about ten reps/teachers from the district explaining again why the IEP was not sufficient. But...I wont. The emotions surrounding these things are still with me. I never received closure from these things. No apologies, no resolutions...nothing. We took P out of public school entirely. After experiencing all of these things for myself as a parent, I reflected and thought about how P's life would be like everyday if I just complied with the so called "plan" for him with the district. Believe me, I do know what it would have been like. We even toured the first school the district wanted him to attend. P was terrified and with all of the smells, the sounds, the flooring (yes, the flooring)...he was distraught. I tried comforting him in my arms while he desperately covered his ears and buried his head into my neck. I tried deflecting the children and staff's eyes and remarks when they looked into the hallway we were in. I tried to ignore them and comfort P but he could feel them no matter how much I tried shielding him. Even the staff that would have supposedly supported him just stared and didn't know what to do. Then the bell chimed and kids were running to the cafeteria. Normal routine for an elementary school student but terror for P. I knew that he wouldn't progress and that if I sent him there, I would have felt with one tour what he would have felt everyday. He wasn't near ready for this. 

I understand the politics and how schools have incredibly limited resources but I couldn't compromise P's progress and advancement. In his re-evaluation, they said how his IQ was only 50 and how his development level was only around a 20 month old at most. Yet I was supposed to be ok with the fact that he would be left to wander the kindergarten class alone? I was supposed to be ok with the fact that he would only receive speech and occupational therapy three times a month when his sensory issues are so overwhelming and he does not communicate? Be ok with the evaluation results but not act on them accordingly? I tried to get him into a more specialized program at the district but was told they wouldnt do it for P. One moment they were telling me these serious conclusions about his development but yet offered nothing to help it?

With me understanding truly where P's needs were, I knew I had to seek out his education elsewhere. I reached out to the Minnesota Autism Center. The Minnesota Autism Center (MAC) comes out to out home 37 hours a week for P.

Oh wait...did I not mention that we bought a home all in the process of this crap? Yeah....we did. I had to coordinate a move from our townhouse to living at my dads for two months while we closed and got the house all set for the kids to fully move in. I know it wouldn't have been possible if not for our wonderful family who helped us. I keep saying our move was 100% a labor of love.

Rest assured, I will be writing more often because I need a creative outlet. I need to be able to write things out and throw them to the cosmos. With everything I have/am going through, I am more withdrawn from the outside world than really ever before. I am so consumed with my role in my family that no one seems to even know a thing about it or me for that matter. No one really knows where I have even been for the last year or more. I am hoping I can shed light on it....a little bit at least. I understand I am a difficult person to contact or meet up with. I have only slight hours in which I can get away alone and even so, I still need to be "available" if I should have to rush home. I know this is my life and it won't be changing in the near future. God knows I am aware. That is why I will be writing much more. Mostly to feel like I have connection to people because right now...I pretty much don't. And yes, I do try to get out but it is not that easy to do. So here is my first post in a long time with more to come...

I'm Home

Summers always seem to fly here in Minnesota. There's only a few months of the year where there's not crappy weather and you just get out and enjoy everything around you. The breeze, the birds, the sunsets and good ol' PBR and Summer Shandy. This summer has been different. This summer has literally blown past me. So much change has happened this summer and it seems like I blinked and it's over already. That's why I haven't written in a while on here. I have been adjusting from quitting my job downtown Minneapolis to being Parker's PCA and just....unwinding. Calming down and taking a deep breath. I have made it a point to go out on my patio every nice evening this summer and watch the sunset....with wine or a beer of course. ha! I would listen to some chill music and just enjoy the moment. You have no idea how much I missed times like that when I was working downtown. I now have time to take a breath, sit and take a "me moment." Before I was feeling so tired and not operational. I purposely took some time off from many things this summer (including writing on here) to just decompress and find my way again.

I have.

For P-man, it has taken all summer for him to adjust to me being home with him. His anxiety level has decreased dramatically. For example, before I quit, he would not allow me to be out of his sight. At bedtime, he knew that when he would wake up in the morning, Mama would be gone. Even explaining to him about me being at work and how I will ALWAYS come back to him...he was so scared to see me leave him for ANY reason. After three months of me being home, he has adjusted SO well and has become comfortable with our new routine. Before I quit, at bedtime I couldn't leave his bedside or stop holding his hand for him to fall asleep. Over the last few months, I have slowly moved further and further from his bedside when his medicine finally kicks in. Then last night, I told him (as he was angelically singing his ABCs as he always does when he gets really tired) that I was going into the laundry room and would be right back. No fuss, no anxiety, no tears. Just his pause between "Q, AW, ESS" and him continuing his letters. I then heard the singing gradually stop and I knew that for the first time, Parker was at ease to drift off alone. He was relaxed and calm to fall asleep without me holding his hand or sitting at his bedside. I came over to him, watched him sleep and knew in my heart I made the best decision I could have ever made. I took a giant leap for my son. He doesnt have the words to tell me what being home for him means to him and I don't need them. I see his demeanor, his anxiety decrease, his eye contact returning....his overall being and know in my heart I did everything I needed to for him. I have told Parker many times that we don't need words to talk for us because our hearts do that. He is now telling me by his overwhelmingly decreased anxiety level alone, that he is glad that his Mama is home. He told me that by the slight pause in his ABCs that he understands and knows I will never leave his side even if I am not at his bedside. That to me is something no job can ever replace. No paycheck can ever give me.

I'm home Pman. Im home for you and your baby sister Quinn.

"Happeee Bir-day Tewww Yewww..."

"Happee bir-day tewwww yewwww. Happee bir-day tew Pakeh...Happee bir-day tewww yewww. Yaaaay!"

Parker loves singing 'Happy Birthday.' I hear him singing in the car, at home, in the tubby...you name it, he's beltin' it out anywhere he can. He loves singing SO many songs. He sings more than he talks to be honest and 'Happy Birthday' is on his top 10 list. Thing is, I want him to understand what birthdays are and that they are very special days. He doesnt enjoy a lot of people around him or to be the center of attention. He likes the very opposite pretty much. This year for his birthday, I wanted to scheme a way to let him know that his birthday (July 12th) is a very special day and that it's a day all for him. I know it is hard for Parker to identify special occasions like other kids would. Birthdays, Christmas, Easter baskets, etc. I didnt want him to feel uncomfortable or anxiety but still recognized and celebrated. Let the scheming begin....

So the night before his birthday, I ran to the dollar store and picked up packages of balloons and some window markers. I wanted to have visuals for him that something was "different" about that day. I blew up balloons with Louise (AKA "Weezie) after the kids were asleep. Almost 2 bags of balloons and a few explosions later, I filled his bedroom with balloons. Right from the get-go I wanted him to see something fun and giggle. I mean, what's a birthday without an abnoxious amount of balloons?! Then I wrote on the bathroom mirror upstairs "Happy Birthday Parker!!" so that he would also see something different in the house. Something bright, colorful, and just for his birthday. Parker really doesn't play with toys so Tim and I got him mountable lightsabers to go next to his bed. They're remote controlled and make noises too. Pretty badass if you ask me. HAHAH!

When he woke up (at the insane hour of 1:30am), he just walked right through the balloons to our bed. No real reaction at all. Honestly, I was kind of glad because the LAST thing I wanted was for him to be playing at 1:30 in the morning. So when it was time for everyone to wake up, I grabbed as many balloons as I could and dumped them all on him. There!! He started throwing them! Excellent. We then went upstairs where I made him some birthday waffles. Washing his hands in the bathroom afterwards, I showed him the writing on the mirror. He looked and smiled.

We then went to Cottage Grove's community water park...which by the way is AWESOME for smaller kids. It's just sprinklers, sprayers and waterfalls for them to run in. Plus there's a playground, basketball courts, etc there too. All free! My kinda waterpark. Parker ran around the sprinklers and waterpads. He was so excited to be around water. He wouldnt run in or through them but he would stick his hand by them for some sprinkles. He would yell for joy, "DINOSAUR!!! DINOSAUR! DINOSAUR!!!" We went with Tim's parents, Ron and Mary, and we had to switch off who would keep tabs on him because he runs away so fast. At one point, he randomly darted off out of the waterpark and towards the playgound. In a flash he was gone running away from us. We corralled him up and played at the park til lunchtime.

When we got home, Tim went to work and I had a plan. I made a "superbed" in the living room. Sheets, pillows, stuffed animals...everything. I then made up a fort over the "superbed" and couch. "Man, this is going to be GREAT! He's going to LOVE watching a movie under here!" I heard him humming the Star Wars theme song so the choice of movie was pretty obvious. No sooner did I turn my back to pop in ' The Empire Strikes Back,' Parker was examining the fort and ripping it all down. I told him it was ok to have the sheets up like that and we will watch the movie from under it. Well, it was a sad excuse for a fort after that but it worked. :)

Tubbies consisted of glow sticks and star wars soundtracks. He loved it. He was not easy getting to bed when it did come to bedtime but luckily it was his birthday so I went easy on him....a tad.

His party was low-key and was just immediate family. Even with a small amount of people there, he still would be in the opposite place most people were. We set up pools, slip-n-slides, water tables, etc, at Tim's parents house. Since he doesnt play with toys, Tim and I asked for the money people would have spent on toys to be put into a pot to buy him a MN Zoo year pass, therapy swing or some iPad apps. Then he also wouldnt have to open presents (which he wont and gets really uncomfortable doing anyways).

After the birthday events being done, I cannot believe that our Pman is four. Four! Knowing of Parker's autism for two years now seems like forever ago but being pregnant and feeling kicks was just like it was last week. Every day he has been on this earth, he has enlightened, taught, created smiles, challenged, and brightened our lives.

Here's to you my beautiful boy. Happy birthday my Pman, my little stinks, my love. Mama loves you to the moon and back.

 

M-i-s-s-i-n-g

The fear, anxiety, horror...the unexplainable emotions that must run through a parent's mind when their child is missing. It's something that is hard for me to even process. Over the fourth, a five year old boy named Scott from Prescott, WI went missing. This little boy is not just any boy..he's a boy with autism. The dread, fear, anxiety and horror just escalated a thousand times.

Thank God that Tim and I have not had Parker go missing. He does run off all the time and is unpredictable in public. Even when he is in a grocery cart, he will randomly stand up and desperately try to crawl/jump out. He's ripped his hand out of mine in stores and I have had to chase and have breifly lost track of him. Even for those brief moments of him not in my sight, my heart sinks and I feel like I get punched in the stomach with a wrecking ball. I start to breathe hard and fast. My head goes back and forth radically scanning every place in my sight searching for him. I have blogged a lot of being in robot mode a lot of the time being Parker's mama and when this happens...I go into my 'Sara Conner' mode. I'm basically a terminator that is blind to anything and anyone in my way of locating him. It's hard to know how to address it with him running off and how it scares Mama and how it's not OK to run away like that. Usually it's hard to know what sinks in with him and what he dismisses. It still doesnt deter me from every single time in a parking lot I tell him to always hold my hand and watch for cars. It never deters me from telling him to always stay with me in stores when he doesnt want to be in the cart. I am a broken record when it comes to talking to him about his safety and I always will be. We live in a townhome and on a dead end tiny street where our few neighbors are the only ones that can even go down the street just to get into their driveways. That still doesnt deter me from not allowing him to ride his trike past 1/2 way down the driveway or in our tiny street because I know he wouldnt understand why he can't do that at any other driveway or street. I am a brick wall and broken record when it comes to his safety. We even have door alarms/chimes on every door that we constantly have on. We have the chimes on during the day and switch the alarm mode on at night. We have door knob covers that deter them from being opened but Parker has begun breaking them. He has a thing with repeatedly opening and shutting doors and when he gets in that mode, he will break the covers so that he can do so. There's never a real moment of relaxation when it comes to his safety in general (wrapping things around his neck, swallowing things etc) but the thought of him wandering away without me being there terrifies me to no end.

Now when I saw the articles and newscasts about Scotty disappearing, I had the same reaction and feelings that I get when Parker runs off. The wrecking ball to the gut, the tears, the anxiety all flooded to me. With our record setting heat and with his home being close to the Mississippi, I just felt fear and instant tears. I couldnt even talk to Tim about it because when I did, I started to tear up. He got out of their home because a repairman was at the home and didn't lock the door behind him. "He's nonverbal like Parker. He wont answer people calling his name. This heat will dehydrate him. Parker loves the water. What if this little boy wanders to the bank? Especially in this heat, he will want to splash in it. He got out by something his parents didn't do...it was by some repair guy. How will people know to approach him and will he seek comfort in them or will he be scared of them? How will this effect him after they find him? Being poked at the hosptial, riding in an ambulance, having people run to hug and hold him.... Oh God I hope they find him." I know the autism community can be extremely divided on things but when it comes to things like this...you feel the same feelings as the parents. With an autistic adult or child being missing, there are things you are petrified about  that parents of missing children without autism don't necessarily think about. They will respond to their name being called. They will approach people for help. They know not to go into a strangers car, they know to search out others and adults. Not usually the case with missing children or adults with autism.

It's been hard for me to even write about this until now...almost a week after Scotty went missing. His parent had to endure all day and all night and into the next day without their son. Without knowing anything, hoping and being desperate he would come home to them. I can't function even a few minutes of Parker being away or out of my sight let alone that amount of time. Scotty was found near the river by a dog named Autumn and his owner came running to their side. I have thought about getting a dog and training it for tracking Parker, God forbid if he should ever wander away from us somehow. The only thing is that with an actual service dog, the cost is out of the question. Who can afford a $10,000+ dog? I know we cant. Even having a harness attached to a therapy dog which connects to Parker so that he's always with us and not on a child "leash." If any of you have had to use a "leash" on your child, you know what kind of awful glares and comments you get. I always am feisty with people who make comments and stare. Bitch please, if all you have to do is judge me on the safety precautions I have to take with my son...F-off. :)

All in all, Scotty is home safely with his parents but the emotions of that day will be with him and his family for a long time. They still even are with me. I know there is a wristband for autistic children to wear as a GPS but Parker won't allow anything on his wrists or ankles. He wont even keep band-aids on. It's something that Tim and I will have to consider about his safety...what's right for him and what's most effective for him. A tracking therapy dog? Save up and get a certified service dog? Get a chip to put in his shoes to locate him if we ever had to? These are the things we are thinking about for our little "Scotty." And even though people in the autism communtiy can be very divided on topics, the feelings his parents endured are felt throughout. The outpour of volunteers who brought Scotty home is a testament to that.

I am so deeply thankful to the volunteers who brought him home safely and I cannot say how relieved I am for his family. I'm so glad you are home, Scotty. And as for what Tim and I believe is best for Parker's safety? That has yet to be concluded...

Below is the link to Scotty reunited with his rescuer and words from his family:
Scotty's Story