Fit Forward Wednesday
Sometimes the hardest parts are the hardest parts. You never know what’s going to hit you and why it hit you. I was standing outside, looking up at the clouds, and saw a deer frolicking with an elephant right behind it. There was a bunny cloud off in the distance and it made me think of my momma. When I was little we used to lay on a big blanket in our front yard and watch the clouds, finding animals and scenery floating by to my delight. I missed these adventures with Owen when he was young. My expectations of how life should go keep me from enjoying how life is going sometimes. The last few days have been amazing though. Owen’s vivid imagination is blooming. We talked a lot more about pants today than we have in a long time. I reminded him that kindness and grace are what we all need. He repeated it and then went on to tell me about one of his therapists that never wears blue pants. I told him that we would have to wait and see but she usually doesn’t wear them. He then told me that his other therapist was on “eternity leave she had a little baby.” Standing at the bus stop he asked me to translate “I want Spider-Man eating a doughnut and chocolate milk in Arabic.” He laughed and laughed as he requested different versions of the phrase. I like to get to the bus stop early so I can have those moments talking to him. When he came home from school I asked him if he wanted to search for treasure. He said, “go for a walk.” I told him yesterday we could go today because it wasn’t supposed to rain. I told him before we could go for a walk we needed to put his stuff up from school and then we could go. When he walked inside he immediately went to his chest. He opened the lid but as soon as he saw me watching he closed the lid. He didn’t want to take it with us on the walk. I decided not to put him in the “little red wagon” because I like him to understand that things can change. We both missed it. We walked and walked and walked. It was an adventure. He talked a lot. He told me about the clouds, trees, summer, winter, fall, buildings, and windows. He talked to everyone he saw. He also talked about blue pants. We were gone probably about fifteen minutes more than his threshold because I could tell his sensory needs were starting to change but he still did fine. The night went fast and I think we were both exhausted from our long walk. He talked about his treasure chest and Santa the pirate but he didn’t ask for anything else new. He did request pizza again and I let him have it. If I could learn to instill the same kindness and grace in my own heart that I keep telling Owen to give to others it would be amazing. I’m thankful for his amazing words and the conversations we are having lately make me very happy. Who knows what tomorrow will bring but I bet he wants more treasure soon. I wonder what he will ask for next. Never give up on the hope for tomorrow. Find your strength and keep moving forward. Smiles to all and donut daze!
This week has been emotional and this week has been hard. And then our power went out. I went to bed early last night, for me. I couldn’t sleep though. The woulda, coulda, should have beens are in my face hard this week. I miss my brother. Owen, however, has had a great week. But last night we had storms. My fear is always that our power is going to go out and he can’t handle this. Maybe it’s that I can’t handle that he can’t handle this. I woke around one and I saw flashing lights and complete darkness at the same time. My laptop was flashing so I knew something was up and at about the same time my fan stopped. Panic mode set in. I started praying hard for it to come back on. I got up to really make sure it was out. I then tried to turn on my bedside table light. It didn’t come on. I needed that extra proof. I looked at my phone, but it wasn’t charging. It was all so much. About that time I got an email from the power company saying my power was out and would be restored at approximately seven in the morning. This sent me further into panic mode. Owen can’t handle the power out. It brings tears to my eyes thinking about it. It’s been years since our power was out for almost a full day because someone hit a power pole and he still asks about this day. It’s right alongside him asking about the roof guys and when they are coming back, the air conditioning guys and why they had on white shoes and camo pants, the guys that came to fix random other things throughout the years, and the ladies that have visited. The list went on and on and not to forget the people that have walked by our house without saying hello. He wants to know when they are all coming back and doesn’t want them in our house all at the same time. This is generally not a quick conversation either. He wants all the details. This is what’s hard as well because he doesn’t always explain this in a way someone else might understand and sometimes I don’t even remember the random person that stood outside our door four years ago looking for something in the rain but he does. The power had only been off a couple of minutes at this point and here Owen comes around the corner. He probably heard the whole house become even more silent than it already was at one o’clock in the morning. Thankfully, he went right back to sleep once he got in my bed. Me, not so much. I think I fell asleep right when the power came back on and then I heard the house spring back to life. I sighed a relief. I was thankful I wouldn’t have to explain to him that it was out and try to get him ready for school. All I can do is breathe. But he was more interested in “treasure Tuesday” when he woke. I was really hoping there was no delay with his treasure chest and hats. He was so excited about his day. When we got to the bus stop he wanted me to have Siri translate “treasure Tuesday” into all the languages. Off he went to school and I was thankful he was happy about “treasure Tuesday.” Owen’s treasures arrived. I was so glad. I wasn’t sure what his expectations were but in general, when he gets something he wants to do everything in the order he is expecting and doesn’t want it out of that order. I put the pineapple hat and pizza hat on the tv stand and opened all the contents into the treasure chest so it would be ready. I took out a couple of the coins and jewels to show him when he got off the bus. He kept saying “treasure Tuesday” as he walked up the steps. He started immediately talking when he walked in the door and saw his treasure chest. “Santa the pirate” brought his treasure Tuesday to life. He was excited about his hats and that Santa the pirate brought them to him. “You found the best treasure,” he said and then he started talking about the hats. He wouldn’t let me open the treasure chest but I showed him he could and then he did but immediately closed it. He told me to fix his pizza and he carried around the chest. He ate almost all of the pizza himself. He put his hats on and talked about them and then he put his hats in their spots but he was loving his “treasure Tuesday from Santa the pirate.” I am not quite sure how Santa become involved but Owen asked for it all. He even had a conversation with his robot about what Santa the pirate brought him. He was carrying around the uncooked popcorn bag talking to it about his treasure and asking YouTube to find popcorn in the microwave but he never wanted to pop it. The internet was in and out all evening which did not make him happy but he would yell, “there’s no internet it will come back” saying part of my words added to his. He carried his treasure chest around and talked about his hats. I don’t know if he will want to play with them tomorrow or maybe he will request more treasure chests or hats. I do know that for him to ask me for all of these things, figure out that Santa should be a pirate, and what specific foods on treasure Tuesday he wanted to eat are all huge incredible things. I’m thankful for his vivid imagination and the happiness he showed me for his treasure Tuesday that turned into my treasured Tuesday. Find your happiness in the world around you and know that you can change the world with your smile. Smiles to all and donut daze!
I wasn’t too surprised Owen slept all night. He was up so early on Sunday. Although I really don’t know which days he will sleep and not sleep anymore. I was thankful though. I woke up around two and went to the bathroom. I lay awake listening to see if I woke him. I tried for hours to fall back asleep but my mind just wandered. I prayed a lot in those hours. He woke in a great mood a little before six and this made me happy. The mornings have been going well. He gets ready with me when I ask him to. He is still struggling to put his pants on but he is at least trying again. For some reason, once he gets a leg pulled up he will now take it completely off but at least he is trying. I pray for patience for both of us. Some days I sit because I want him to stay calm, I want to be calm. I remind myself to focus on how far we have come. We got to the bus stop and he wanted me to have Siri translate “treasure Tuesday” into all the languages. He woke up asking me about it and was very excited that Santa the pirate is going to bring him a treasure chest with a pineapple hat and a pizza hat. It’s supposed to rain off and on all day tomorrow so we may have to have our treasure hunt at home but hopefully, he will enjoy it and we can see what his expectations are. Sometimes he has very specific ideas in mind and can’t explain what he wants but hopefully, he will be able to tell me and he will enjoy it. He is on the alphabet train in all the languages and particularly the letter P right now. He wanted popcorn and pizza. I gave him popcorn and told him we would have pizza tomorrow night when we had treasure Tuesday. I’m hoping that the delivery is not late. I’m as excited as he is I think. He has been finding all the BeatBo videos he can in other languages. He still asks me when they are arriving in all the languages. “BeatBo in the box come,” he says. I’m still searching for them and trying to figure out all the languages they do come in. We can only have so many robots in the house. I am so thrilled that he asks for them though. They have him singing the alphabet song in numerous languages now. He wanted to do the small, medium, and large order again. He can name which one is each size but he puts the small on top of the medium instead of next to it. I know it will come though. He is back to sitting on the air vents and back and forth we go. He says, “it’s cold cold is winter hot is summer.” I go in circles trying to explain the weather to him and the vents put out the opposite of what the temperature is outside. I think he understands but I’m not sure he does. He is constantly saying the opposite of what something is so I know this is hard when it actually is the opposite. Now every time he wants me to plug in his tablet he comes to me and sings “p is for plug in pa pa plug in.” By the end of the week, I think it will be a whole song and dance. He was pointing out all the facial features of a character on a video and then he got to the ears and said he needed to clean his ears. I see him blossoming and I am beyond excited about it. There is joy in watching my sweet baby O thrive. I’m thankful for every word he speaks when I know how hard he works to say each and every one of them. Something I’m trying to remember is to let gladness take over the sadness and know that tomorrow is a brand new day. Smiles to all and donut daze!
“Nederlandse,” Owen said to me. I opened one eye. I wasn’t sure what he said or if that is what he said but he handed me his tablet and that was on the screen. All the languages he knows amaze me. I don’t even know what time that was but I said he needed to go back to bed. He said, “tv in your room.” That meant he was going to watch tv in his room only because that is what I would say to him but it meant he was going to watch tv in the living room really loudly. On our way to church this morning I talked to Owen about praying, and kindness and grace since we spent a good deal of the morning discussing that he should look me in the eyes and not at my legs as soon as I put on pants. He will get an inch from my legs staring at them, stopping me in my tracks and I don’t exactly stop well. I wanted him to remember to not talk about blue pants when we got to church. I also like to talk to him about why we pray and how he can pray. I told him we can tell God we are thankful for the things we have and he told me he was thankful for one of his favorite people. That made this momma so very happy. He had a great day at church and was very calm. I love hearing the stories they have to tell me about his day and it makes me even more thankful. When we got home he wanted to go for a walk in the “little red wagon.” I told him that after he ate his lunch we would go. He has been talking a lot about pirates, treasure chests, and an app he plays with that gives the character new hats. Everything is intertwined together. He loves pirates from several different shows and apps as well. I told him we could get a treasure chest but he had to help me pick it out. When he has something in mind nothing else will do and it’s not a matter of convincing him otherwise. Plus, he wants Santa to bring him a pineapple hat to get out of the treasure chest. So I started showing him the treasure chests and he finally chose one. I started to order the treasure chest, pineapple hat, and the Spider-Man blanket I thought he wanted and he said, “pizza hat.” I said, I thought you wanted a Spider-Man blanket and he said, “not today.” I told him we could still order it and he said, “pizza hat” one more time. I told him I ordered it and it would be here Tuesday. For the rest of the night, he ran around saying “treasure Tuesday treasure Tuesday.” He was so giddy. He was laughing at the video that showed the different hats in it and yelling, “present from Santa treasure Tuesday.” I was so excited to have all the different conversations with him. “I get a treasure on Tuesday,” he said. Then he said “Monday” and he paused. It was almost like a question but I said, what do you do on Monday? He said his teacher’s name for Monday and then “treasure on Tuesday.” I said, you go to school first and then treasure on Tuesday. I didn’t want him thinking he would miss school so he could go on a treasure hunt. He ran off singing, “treasure Tuesday. He handed me his tablet and said, “p is for plugin.” He then came up to me and said, “medium large.” He was watching Mickey so I took three objects and he had to put them in order. He did it several times for me. It’s all clicking. I was emotional today but these moments brought me clarity and strength. The gift of time spent with my sweet baby O is better than anything else in the world. Sometimes I forget the little things are the important moments. I have to remember that time is precious, his voice is what my heart needs to hear, and his laughter fills all the holes in my soul with a brightness I never knew before. I’m learning what truly matters and that is because Owen is telling me his story of life. I can’t wait for “treasure Tuesday.” I don’t know exactly how it will go but when you have Santa and pirates involved I’m sure it will be good. But first Monday. I pray for a good night’s sleep and a beautiful day tomorrow. Find your happiness and shout it from the rooftops for the world to hear. Smiles to all and donut daze!
I felt calm when I woke but the tears were there. I thought I heard Owen. Scratch that. I thought I heard Owen’s game but the volume was so low. I did. He must have just gotten up though because he still had a full battery. He didn’t go to the bathroom so I sent him on his way. Volume is one of the things that no matter what it is set at he wants it louder. At night after he goes to bed I turn his tablet way down so at least it isn’t blaring when he first turns it on. It only lasts a couple of minutes but first thing in the morning he doesn’t generally turn it as loud. Today did not go according to plan so we stayed home. Once Owen realized he wasn’t going to see his grandma today he did not want to go anywhere. I told him that sometimes grandma has to do other things and he can’t always go to her house on Saturdays. He loves going but he handled it well after asking a few times throughout the day. It doesn’t get any easier when his routine changes but he needs to learn that routines get changed. This required me to sit a lot to keep him happy. I sit a lot anyways but today we spent a lot of time sitting together. I haven’t figured out how to tell him there will be several times over the next few months that his routine will change. When I scheduled his appointment to see the specialist in September I didn’t even think about it being a Thursday. The original date they gave me was a Wednesday but the appointment time was very late in the day and we would have gotten home way past his bedtime. This would have made the trip and the nights forward harder for him. They rescheduled it to a Thursday at an earlier time. The time is better but now he will miss his therapy sessions. I will just need to explain it to him and hopefully, when I explain he is going to see a doctor he will be happy. I have always made appointments feel exciting for him. I want him to know doctors are there to help us so I tell him that it is a big deal when we get to go to see some of our favorite people. I never wanted him to be afraid of going. Thankfully he likes going to all of them. Plus I have a few weeks to overthink it all and try to figure out when to tell him his days are changing. He watches a video that shows an alarm clock and he likes me to sit and watch him move through the video one second at a time with him going over the different frames with me and then starting over. He talks about all the parts of the alarm clock and the time. He keeps telling me it is thirteen o’clock. He says it in another language and then says, “thirteen o’clock.” I haven’t figured out which language it is though. I got him an alarm clock and I had shown it to him before but he had no interest in it. I try to give him real-world examples when he likes something in an app or video. I showed it to him again today and how the bells rang like they did on the one he was watching. I handed it to him and he watched the little hammer hitting the bells. He turned it off, walked to the couch, and he covered part of it with his favorite blanket. The night went quickly by and he stood in the kitchen talking with me. He told me, “ketchup honey is yummy” and he went on “it’s a fridge refrigerator and stove is oven.” I think he was repeating words used on a review he had been watching because he said, “welcome to my channel.” I asked him if he wanted to make a YouTube channel and he said, “no” but I don’t think he understands what that means. So one day maybe he’ll have his own YouTube channel. The new scream he has learned is his favorite thing to do. He has started mimicking this scream and he continues to perfect it during all hours of the day. This is going to get interesting. He fell asleep requesting a Spider-Man bed and blanket. That’s going to get more interesting. Tomorrow is a brand new day. I’m thankful for the songs he sang me today and the smiles he gave me. Some days it may feel impossible but believe in yourself and the rest will follow. Make it a great day. Smiles to all and donut daze!
Owen woke a little after one. I was hoping upon hope that my going to the bathroom would not wake him but it did. Thankfully he fell back asleep quickly when he got into bed with me. I’m also thankful he was so tired he didn’t flip-flop around the whole night. A little tossing and turning but at least his head didn’t end up at my feet. I think his week was catching up to him because he wanted to lay in bed and didn’t run after his tablet. I gave him the countdown for getting ready and it wasn’t long before he realized that if he didn’t get up he wouldn’t get to play with his tablet before school. It was another smooth morning for us to get ready. He was a little concerned with my pants but I said, “what do you give mommy” and he replied, “kindness and grace.” For the last two days, he has talked about several of his triggers for meltdowns like the blue pants, my pink shoes, the doors, and lights but thankfully he has moved through them all without causing a meltdown. When Owen got on the bus the aide said he was not giving them directions anymore and was calmer. I was thankful for two things. He isn’t giving them directions anymore and they know him well enough that they know he gave directions. He was all about the directions for a while, screaming them as I would drive, and mad when I didn’t turn “right” even though it really was a left he wanted me to turn. It also doesn’t help that he knows all the directions to probably every place he has ever been he just can’t explain it. When he got off the bus it was funny because the afternoon crew said the same thing to me about no driving directions but instead he was pointing out the scenery like the flags in our downtown. He fixates on them because they change them out for the holidays. This sends him spiraling for months on end and at about the same time I can convince him they are fine they get changed. Tears sit in my eyes because I can’t even imagine how hard it is for him to see what he thinks is the wrong flag on the light poles all around our downtown. Hours and hours of meltdowns over these flags. I wish I had better words to explain things to him and I can’t avoid most of his triggers. Plus, I want him to learn to get through them with different types of coping mechanisms because we can’t avoid something like the flags that he sees every day. Change is hard no matter what stage of life you are in and it is difficult for him to process change. I am thankful that both the morning and afternoon crews see how much calmer he has been though. I had to run errands today and I put some things in the back of the car where Owen normally sits. I closed the door and almost knocked on the window because that is part of the routine that keeps him from crying and having a huge meltdown. I’m always trying to stay two steps ahead of a meltdown that isn’t even happening and this time he wasn’t even in the car. I caught myself and realized what I was about to do. Such a learned response from me to keep him happy but I always wonder if I’m making it harder or better for him. When he came home from school I could tell it had been a long week for him. He listened to none of my instructions but he wanted me to listen to all of his. He tried to give me his tablet but I couldn’t take it right away because I had my dinner in my hands eating and that lead to him biting on his finger and then he pinched my arm. He hadn’t done this in quite some time. I made him breathe with me. I explained that kindness and grace work in this situation too. As the night wore on he screamed a lot and ignored me more. When he wouldn’t answer me about what he wanted for dinner but yelled at me again I started crying. It’s all so hard on my sweet baby O. I whispered, “I love you” and then he wrapped his arms around me saying, “hug.” I cried harder knowing that he is trying so hard to process it all. The important part is that he knows I love him. The night was complete with a half-eaten dinner because he didn’t make a choice and that means it wasn’t what he wanted and then the fake snoring led to real snoring quickly and our day was done. I learned a lot today and I’m thankful for the gift of the people that care for my son. Today is the stepping stone for tomorrow’s future. Each day is a blessing for our dreams ahead. Smiles to all and donut daze!
Pushing through the day when it wasn’t even six in the morning is not what I had planned but there I sat in my bed, drinking my coffee, trying not to cry for the woulda, shoulda, couldas. Owen slept next to me. He came to my bed around two and we were both exhausted enough to fall back asleep. My coffee cup ran dry quickly, trying to keep my emotions from spilling over my eyelids. They say if you drink water you can’t cry at the same time. I substitute coffee. It does not work. And I still cry. He slept through me getting up and getting a cup of coffee. He was going to have to get up soon for school but I let him sleep. He’s been having some really good days and our routine feels like it is falling back into place, for this, I am very thankful. But I feel like I’m falling apart. Grief is a beast. I’m trying to focus on the positive side of life. Owen feels my emotions and they are hard for him so I’m trying to explain to him that mommy is sad but he is oh so loved. He did great this morning once he got out of bed. He listened when I told him the different steps for him to get ready and off we went to the bus stop. He reminded me that I was going to pick him up for therapy and we stood there listening to Siri translate his requested phrases before the bus got there. I always stand on the side of the bus and sign “I love you” as they are buckling him in. Last year he never really looked out the window towards me but I still wanted him to see me if he did. This year is different. He watches me as they are buckling him in. It brings tears to my eyes how far he has come. The rollercoaster ride to get to this point has been rollercoastery and all over the map but here we are growing and moving forward. When I picked him up from school he talked more about blue pants than he had talked about all week. I distracted him thankfully and we moved forward. Something about him going to his therapy and seeing his therapists triggers more of these responses. The good news is that “kindness and grace” are winning. I asked him what we needed to give everyone and he said, “kindness and grace.” He had a great session they told me and when he got in the car he put his hands up and started singing a few words and then said, “hands in air move like bird.” I have a feeling maybe it’s a new song they are working on at school. I love that he is moving his hands more and connecting those motions to expressing himself. He is starting to wave to people now. He does what I call the toddler wave where he waves to himself but he’s starting to turn it outwards. I know it won’t be much longer and he will have the whole process down. He didn’t want to go get chicken when we left his therapy place. He wanted food when we got home though. He said he wanted veggie straws but I’m trying to get him to say “please” now. He used to say it all the time now his words run together and he isn’t saying them clearly, plus he isn’t using words like please and thank you. I remind him about manners and I explain that I understand it but I want him to be able to ask anyone for something. So I asked him again and said what do you want to eat and he said, “pizza.” I didn’t have any pizza so I told him we could have one tomorrow or Saturday and he said, “popcorn.” I had popcorn so I showed it to him and he said, “no.” My conclusion is he wanted to talk about foods that started with P but he didn’t really want to eat them. The night went fast and thankfully he remained calm. He’s ready for his Friday. I’m thankful he is enjoying school and that he is already learning new things. Find your strength, be inspired by the world around you, and know that your dreams are possible. Smiles to all and donut daze!
Blue pants, blue pants, blue pants. The anticipation of tomorrow I think had Owen talking about them a little more today but at least he told me we weren’t going to talk about them after he wanted to talk about them. The morning flew by quickly. He woke at some point last night and got to the couch again. I need to put the blanket in his bed. It’s one of his favorites but he likes it on the couch. He has one almost exactly like it in his bed but it is a different color. This makes a difference and I won’t say on his bed because it seems the fitted sheet is about the only thing that ever stays somewhat in place, somewhat. I am thankful he is at least falling back asleep on the couch. I heard him stirring but I wanted to see if he would go back to sleep before I moved a muscle. He thankfully slept a while longer and so did I. He was happy when he got up and ready for school. He told me several times about wearing his safety belt and he wanted me to wear my pink shoes. I told him that he needed to give me kindness and grace and I wasn’t going to wear my pink shoes today. He didn’t mention it again. He did however want me to fix him a waffle and lots of milk. He did not eat the waffle. He wants it on his plate though. This same thing happened last year. He wants food before he goes to school but most of the time it’s because he wants it on the plate. Everything in its place and on his timing. He helped me get him ready to go to the bus. He is struggling with putting on his clothes lately. That almost sounds like he has never struggled to put on his clothes but this is like a regression. It feels like these are some of the skills that are sitting on the shelf, waiting while he is learning something else that needs his undivided attention. I’m trying to help him refocus on one step at a time. I’m trying to remember this myself. We got down to the bus stop and he immediately wanted to hear Siri translate his requested phrases into all the languages. I always wonder how much he comprehends. Lately, he hasn’t wanted to speak as much as he wants to listen to the translations. I did ask him what his favorite language was and he said, “Portuguese.” I was kind of shocked by this. First, he answered my question. And second, it was not what I was expecting for the answer. I really didn’t know what he would say but I was surprised he answered me. His bus wasn’t much longer and off he went. He hardly focused on the kids today at all. When he came home from school he wanted to talk to me about blue pants. He was not upset about them though, thankfully. I reminded him several times about kindness and grace and he went on about not talking about them. He ate a big dinner tonight and thankfully did not put the shrimp in my bed. He wanted me to plug in his tablet, instantly. And then he wanted to unplug his tablet within two minutes of plugging it in. I said multiple times, not to delete the app he was about to delete, and to not take it off the charger because it had no battery. Off the tablet went. This is where the “which battle do I pick” comes into play. The tablet lasted maybe a couple of minutes and he was right back asking me to plug it in. He immediately wanted me to drop what I was doing to plug it back in. I told him to sit it down and I would once I was done. The instant plug-in was not going to be forgotten that easily. He picked it up numerous times off the tablet to get me to do it. I tried to explain he spent more time worrying about it than he was spending time playing with the charged tablet but this is not a concept he gets yet. And I get tired. He was happy as a lark with the tablet plugged back in and then started singing Christmas tunes as he walked off. He wanted me to “lay right here and go to sweep” as soon as he got in bed. I leaned over to climb through the tent cover opening and he pulled my hair, laughing hysterically. He patted the pillow, which I was shocked he could do, and laughed again when he wanted me to put my head on the pillow. I told him I wasn’t going to get in the bed if he was going to pull my hair. Before I could say anything else or even get in the bed he was out. I stood there with half my body hanging over the bedrail for a few minutes not to wake him but he didn’t move. I’m hoping he sleeps all night again. Tomorrow is therapy day and hopefully, he will make some more great progress. They are trying new exercises with him to work on his leg strength and walking ability. My greatest gift today was to hear him sing. His voice is music to my soul and lifts my spirits every day. Be thankful for your victories and know that tomorrow the sun will shine again. Smiles to all and donut daze!
I walked to the bathroom a little after five. I wasn’t surprised Owen was still sleeping after his busy day at school but I was surprised he was on the couch. I turned on the kitchen light and immediately I heard “turn it off.” I didn’t realize he was asleep on the couch. I don’t know what time he woke up but he went to the couch and was covered up in the big blanket I keep there. I told him I’d turn it back off after I got my coffee. I started walking to my bedroom with coffee in hand and I heard him get up. I reminded him to go to the bathroom and then he got his tablet. Then he let me sign all of the ABC song without looking away. He had a smile on his face the whole time I was signing. It feels like he is getting more accustomed to hand gestures and sign language. I wonder sometimes if it has to do with all the motions and him trying to keep order in what he sees. He asked me about picking him up for therapy on Thursday, his safety belt for the bus, and his therapist’s blue pants. This was the first time he had mentioned her pants in a few days and he didn’t dwell on it. This felt like progress though. He didn’t mention my pants or his when we got dressed to walk to the bus stop but my pink shoes were of interest so I repeated that he needed to have kindness and grace for me about my shoes and he moved on. On the way to the bus stop, he started asking me to have Siri translate “I want chocolate milk please in Arabic.” When we got to the bus stop there was a little boy on the opposite corner, the corner Owen has a hard time with. He said, “different person” and then said, “it’s a little boy.” I prayed it stopped there. I prayed it didn’t lead to a huge meltdown. I felt frozen in place hoping the bus would get there soon. It’s been years since the lady with the dog has been on the corner but there are still days that Owen can’t handle it when someone else is standing there. By this time there were a few more kids running around waiting for their bus. He was distracted by the kids but he was also very aware they weren’t who he wanted to be there. Thankfully his bus turned the corner and he changed his focus. He grabbed my hand before it got in front of us. I always take his hand because I don’t want him to run toward the bus before it stops. He has no concept of fear or being hurt. I was relieved when he got on the bus and he didn’t have a meltdown. I try to remind him that different people will be in different locations. This is a hard concept for him. It took years for him to be fine with me inside my parents' home. If someone sits in the wrong place, or if I cross my legs, or even if the wrong color car goes by us at the wrong stoplight these are all things that can cause meltdowns for him. I don’t know what in particular about these events cause the meltdown but I can only imagine what he is going through. I try to remind him to breathe and count to ten, and if ten doesn’t work we got to twenty and then thirty. I want him to find ways to focus on something else. “Pink shoes” were his focus when he got off the bus and his teacher’s name. From there he wanted to go on a treasure hunt, with a pirate looking for new hats while riding a motorcycle. The rest of the night was just as interesting. The only thing he got upset about was I had his socks on my bed sorting them. He kept saying, “all done with the socks” and tried to move them off the bed. I didn’t think he would notice. I don’t know why I thought he wouldn’t. I quickly put the pairs in my hands and carried them to his room. He was behind me every step. I wanted to have a calm evening so I didn’t try to do anymore laundry. He was pretty calm the rest of the night but he wanted me beside him or reading the YouTube video titles so he could look up the exact same videos with the voice-activated option to find the same video. I will never understand how this became his thing but he needs to look up the exact video he is watching when I have shown him how to look it up by clicking on it. This is not an option for him. There is something in the process he needs to see. I can see the routine is slowly washing over him and he is settling into it quickly. For this I am thankful and I’m hoping tomorrow is a great day for him. He gave me a huge hug before he was off to bed. I love when it is completely unprompted by me. This made my day. Our hearts may be broken but we still can choose to shine. Let yesterday go and soar with the rays of sunshine. Smiles to all and donut daze!
I prayed all day for today to be a good day. Besides my emotions today was a great day. Grief does not let go of you even on a great day. It sucker punches you right in the gut and maybe more so on a great day. These are the types of days I would say to “uncle wichard” it was a good day for Owen. He still woke up early but for a day that was filled with so much anticipation for him, I’ll take five o’clock in the morning as opposed to any earlier. He went straight to the couch and got his tablet on the way. I heard the tablet before I heard him because it was loud. Volume control is not one of our specialties. I got up and told him he needed to go to the bathroom. He was not amused but went. The coffee could not drip fast enough. He didn’t mention blue pants, not once. Only my shoes. He wanted to make sure I was going to wear my pink shoes. I am still wearing the required outfit but I want this peace to wash over him for now. I want him to have confidence in what I’m wearing so it can be at least a moment of control for him when he looks at the world as a whole. We talked about kindness and grace again this morning before he left for school and I feel him more at peace with all of this. I need him to be at peace. Once I can find a way to calm his anxiety over my clothes and what the world is wearing then I think he will be able to move past this. He listened so well this morning and didn’t linger at all when I told him the steps we needed to do. We walked down to the bus stop and it wasn’t long before the bus turned the corner. He was off. When I walked back through our door I thought about how he smiled for me when I took his picture. He said, “smile cheese” and I knew this was extremely hard for him but he did it for me. I knew the day would be hard for him, adjusting back to his routine, but he was with his beloved teacher and I knew this would go a long way towards making it a great day. When he came home from school, he got off the bus, and immediately said, “pink shoes” and then his teacher’s name. I was thankful it wasn’t “blue pants”. He seemed calm otherwise. I asked him what he had for breakfast and he said, “donut.” Then I asked him what he had for lunch and he said, “chicken.” His teacher confirmed this is what he ate. This is a skill we have been working on for some time. I want to be able to ask him questions the pertain to his day or days gone by and have him give me answers. I am trying to get him to understand the concept of conversation and be able to share important information or something that makes him happy. His teacher said he had a great day. The first day is always challenging to get back into the routine but my sweet baby O did great and he sure was ready for it. One day at a time I remind myself, one day at a time. I keep telling myself grief has a hold of my heart so be kind to myself and keep moving forward. Owen’s laughter was exactly what I needed tonight. The melodic sounds filled my heart with gladness. Find the song you want to sing and lift your voice to carry your heart’s desire. Smiles to all and donut daze!
I'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart.