Hemihyperplasia

Create a new post for topic
Join the Conversation on
Hemihyperplasia
80 people
0 stories
13 posts
About Hemihyperplasia Show topic details
Explore Our Newsletters
What's New in Hemihyperplasia
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Counting Tuesday. The nights have been better for Owen but for me not so much. I think, I rethink, I overthink, and then I think about all the things I need to think about again. Owen needs help with everyday moments. He can pull his shirt on and his pants but generally they are backwards or even inside out. He’s doing great about his socks and shoes but this too can cause problems. If the tongue folds into his shoe or the velcro comes out of the holder it causes him to scream and get upset. Buttons, snaps, and zippers are all still in the learning phase as well. We got ready for the bus and he saw that I had a dot of water on my pants from helping him brush his teeth. We had to quickly move forward. We got outside and he kept looking at how his pants were covering his shoes. He said, “help with the pants” as he was trying to move how they fell on his shoes. He lifted his pants back up and looked under his pants like he wanted to make sure his legs hadn’t disappeared. The longer his pants are the more problems they create. People often look at Owen and don’t see autism. That is a good thing but then they also question why he uses training wheels on his bike or an armband when we go bowling. Questions are always fine but the answers are not always easy.What does autism look like? What does a disability look like? How do you explain in a quick exchange what is going on when there is no quick explanation? If you look at me and I don’t move you don’t see the fact that I have hemihypertrophy -the right side of my body is larger than my left, arthritis, scoliosis, Hashimoto's, and walk as slow as molasses with a huge limp but I keep moving forward. I’m trying to work through it all and gain strength but this momma is tired. We all got something but it’s how we embrace who we are that makes us who we are. Kindness and grace are two of the most important lessons I try to teach Owen. We live, we learn, we grow, and throw lots of love in there. Nothing defines us until we let it define us. We can overcome the obstacles that are set in front of us and believe me I have to convince myself of this every day but we can do it. Sometimes I’m overwhelmed by all the sounds around me and want the world to be quiet for a moment. Not all of them bother him but I never know when the screams will erupt from the noises around me. I sit on pins and needles wondering what will happen next. When Owen came home from school he talked about all the places he wanted to go but they were all the places he wanted to go tomorrow so we shall see what happens tomorrow. He was calm most of the night. He played his harmonica and drum and then he read a book with me. In his prayer tonight he was thankful for his teacher and aides. I love how his daily prayer is building and growing like he is. A soul is broken by the memories they walked through but refreshed by the sunshine in the days ahead. Smiles to all and donut daze!

Most common user reactions 1 reaction
Post
See full photo

Even Sunday. The happy dance happened today. I woke by five, listened, and heard nothing but the sounds from the world around us. I fell back asleep even though I really needed to go to the bathroom I didn’t want to take the chance of waking Owen. Six o’clock came and I heard a noise. He was awake. I heard his tablet turn on and I suggested he go to the bathroom first. He did. He wasn’t thrilled about it but he went. Six o’clock in the morning, I’ll take it. We had an extraordinary morning. He was so happy and he was talking to me about everything. He came to me and showed me a video he was watching on his tablet. It was going through the alphabet and using pictures of items that started with each letter. He was telling me facts about each item. He then sat with me and we read a book together. He ate his breakfast late because when he got up he said, “no chocolate milk”. He wants to wake up and get his day started now it seems. When we started to get ready for church this was when everything seemed to change. He became concerned about the banana again. Only this time it was because I didn’t have one to take to church with him. He wanted one to go in his bag. “Not take a banana with you,” he said, looking for it everywhere and kept repeating he needed a banana. He started doing his mouse walk to the bathroom. He takes his hands and moves them up towards his chest and then hunches over, walking haphazardly around, slowly to his destination. At first, I thought maybe he was trying to mimic the way I walk since I tend to throw my leg out when I walk because of the hemihypertrophy and arthritis but now the movements feel more calculated. By this time we were running late and he was still very concerned about the banana. I rushed him through the process of getting dressed and tried to convince him we would get bananas later. So here we are again on the rollercoaster banana story. And now all day I’ve been singing the song Yes, We’ve Got No Bananas. On the way to church he went through his usual lines about the stoplights but today he told me that “pizza is triangles lights”. We just go with it. He started saying that stoplights were triangles and now he finds things that are shaped like triangles. He did great at church and when I picked him up after the service they said that he found one of the fake bananas and he wanted to throw it in the trash. I’m just thankful there were no meltdowns over it today. When we got home with his ten chicken nuggets and cheeseburger he devoured it and pretty much everything else I put in front of him for the rest of the day. He was very expressive and talkative with me for the rest of the day. I’m thankful for his interactions and wanting to play with me. Sometimes we wonder why me. And sometimes the wonder is why not me. I’m thankful for the gift of my son and all he has taught me. Cherish the moments you have for today is a blessing. Smiles to all and donut daze!

Post
See full photo

Courage Thursday. I fell asleep very early last night. So early that I woke up by midnight numerous times thinking I was late starting our day. I kept listening for Owen and I thought I heard him around four, but I didn’t. I finally got up to go to the bathroom and he still didn’t wake up. I think the sleepies finally caught up with him. He had a big day ahead with school, going on a field trip, and then therapy. I asked his teacher how his field trip went when I picked him up for therapy and she said he did fine but he really didn’t want to watch the play, instead, he wanted to see what everyone around him was doing and wearing. As soon as he saw me, he said, “black shoes”. He bends down to look at my legs and what I’m wearing. This action had been gone for a while but resurfaced a month or so ago. He used to stop me in my tracks with his sudden movements like that. I would be walking and he would dart in front of me, stopping to look at my legs. Sometimes he would laugh, sometimes he would pull on my clothes, and other times start screaming but he couldn’t express why. I never was sure if it was because he could see the size difference in my legs from the hemihypertrophy or if he was fascinated by my pants or even upset. Maybe blue pants were a thing then too. He did great at therapy today. I love how all of his therapists are working with him separately but they truly work as a team to help with all of his needs. He has made huge strides and I’m very thankful. When he was done I got him some chicken nuggets and we came home. The dude was hungry. He ate all twelve that I got him plus French fries and then a snack afterwards before bed. We had a full evening playing music, reading several books, and working on his writing. He acted like he did not like it when I attempted to sing but secretly I feel like he loves when I sing but only on his terms. I’m hoping he sleeps all night again but I’m not putting any eggs or chickens in any baskets. He had a little bit of a hard time falling asleep but at least he was happy. I’m thankful for how far he has come. Share your joy with the world around you because a smile is sometimes exactly what someone needs to change their day. Smiles to all and donut daze!

Post
See full photo

So Into Sunday

Owen felt calmer with a high-strung attitude all day. I felt anxious with a desire to find calm. The rains have struck and the flooding has begun. Add it to the next stage of the weather phenomenons that keep happening. I am not a fan of rain. It turns my tortoise speed into a snail’s pace. My body does not like the rain at all. It’s like a sponge and sends all my conditions into a four-way stop and none of them want to go. I was born with a condition called hemihypertrophy where my right side is larger than my left. I also have Hashimoto’s which is a thyroid condition and sprinkle in a little severe arthritis and you got a trifecta of fun, especially on these rainy days. But as I always say, we all got something and each day we can choose to let it control us, or we can find ways to still smile. And Owen helps that smile stay big and bright. He seems like he has grown a foot over the last few days, maybe not quite that much but he is truly growing. I was waiting for his next memory request to surface and he started talking about our beloved coffee shop, another Saturday tradition that has been put on hold. “I’m not going to the coffee shop today”, he repeated throughout the day. No, my sweet baby O, not today. My fears of how he would react if everything shuts down again keep me from taking him too many places. The sadness sits in my heart knowing that he was devastated for days, weeks, months when all of this first started happening. I would hold him and he would cry or scream off and on all day. How do you explain the unexplainable. It felt like Owen was understanding more as I was telling him why we weren’t doing different activities but maybe it was me hoping that he would find a way to cope with all of this. He gets to go to school tomorrow and as I wrote that I said a prayer after the fear washed over me like the rain. He fell asleep easily but I know he won’t sleep through the night. I long for him to get a better night’s rest. One day at a time I remind myself, knowing that today was a pretty good day for my sweet baby O. And boy did that dude eat and he serenaded me with some songs in every language he knows. Sometime in the middle of somewhere, I found a dream, and the inspiration comes from the smile he gives me every day. Set your goals, check them off one by one, and make today matter. Smiles to all and donut daze! #Autism

4 comments
Post
See full photo

So So Saturday #Autism

Owen had one of his best days yet during our quarantined journey so far. With that being said he had his moments, but I think I had more. I just wasn’t feeling great today. Everything was a struggle for me. No fever or that kind of thing, just my usual mix of thyroid fun with a side of arthritis and hemihypertrophy. Owen and I laughed a lot. He wanted to actually play with some of his toys, which he never does with me. We played basketball for close to an hour. I missed a basket at one point and he said, “you missed good job”. I had to laugh. I wonder if he ever realizes how funny he is. We sang a lot of songs, he played his drums, and while he was watching a Mickey Mouse Clubhouse episode he asked for a horn. There was a trumpet they were playing and he wanted one. I love how much he is into music. It truly makes me happy to hear him requesting a musical instrument or wanting to play the ones we have. I try to encourage him to play his drum and other instruments to work on his fine motor skills and dexterity. We painted together as well. He’s been asking more often to paint his own designs and not only the backgrounds with me. He felt more grownup to me. He was talking to me with more words, even though he still made a lot of his sensory noises. He even got the milk carton out of the refrigerator several times and gave it to me to fill his cup. I asked him if he wanted “shrimp, chicken, or a corndog” for lunch and he said fish. For dinner, I changed it up a little and asked if he wanted “shrimp, pizza, or a corndog”. He said fish again. Hey, he’s telling me what he wants I’m going to fix it. And he ate great today. The best party of the day though was dry underwear. That in itself was the victory of the day. It seems like I asked him a thousand times and made him go more than that, but he made it through his day. I told him many times that he was doing a fantastic job and he should be very proud of himself. He was king of repeat with his words, but I can tell when they are for a purpose and when he wants to push my buttons. Today’s were the button-pushing variety. The more I tried to ignore him the more he got right in my face, repeating the same words over and over. Ignoring the words and actions bring around other behaviors like his new favorite one, the act of sounding like he is hyperventilating. This was also thanks to a Mickey Mouse Clubhouse episode and at this time causes me almost to hyperventilate before I realize he is acting the part. All and all there were many more positive parts than anything else and the key was Owen was happy. Find your joy even in the rain because the sun will shine again. Know that tomorrow is the first day of the rest of your life. Smiles to all and donut daze! #Autism #SensoryProcessingDisorder

Post
See full photo

What Kind Of Monday #Autism

Well, Owen made it to a little after four in his bed. That’s one of those kinda good victories we celebrate and then he slept for a couple more hours in my bed before we had to get him ready for school. He’s like an octopus that is working a Rubik’s Cube while eating pizza, dancing, talking on the phone, and deciding what we are going to do for the next month of Sundays. Busy is the word that comes to mind when he sleeps. I guess he is always trying to find the right spot that allows his body to rest. Owen is now having a hard time touching things like elevator buttons or putting his arms through his coat when only a month ago he couldn’t wait to push the elevator button and he didn’t love putting on his coat but putting his arm through the sleeves were no problem. I’ve heard people that have sensory issues or sensory processing disorder describe the feeling like they are having bugs crawling on them. They don’t want to stop moving because their skin becomes alive. I wonder if this is what is happening for Owen. And I can relate to this feeling. I was born with hemihypertrophy, the right side of my body is larger than my left. My right leg especially feels like it weighs a ton and for me to touch my leg feels like an out of body experience, like it’s not even my leg. I wish I knew how to help Owen through these moments. We are slowly moving into spring so he won’t have to wear a coat for a while, but this then brings on the challenge of getting him used to wearing shorts or even if I let him wear pants all the time seeing me in shorts causes many transitional moments that can lead to meltdowns. When I put pants on Owen in varying lengths if they do not fall exactly as expected on his shoes it causes him to tug at his pants trying to adjust them. The same for me. If I wear shorts around the house instead of lounge pants he will tug on them until I change or even go through my clothes trying to find something he thinks I should be wearing. I take a deep breath trying to wash away the sadness because it’s so hard on my sweet baby O. Knowing that clothes have caused him hours and hours and hours of meltdowns brings tears to my eyes and a lump in my throat. All I can do is try to explain to him that it will be fine and that we can work through it together. I pray this year I can find a way to explain to him that we no longer need our coats when we walk out our door and that it’s time for us to wear shorts. His communication skills are improving every day. I’m hoping that will help with the connection to the seasonal change. We talk about the weather every day and I know that we will weather any storm that comes our way. Find your strength, be courageous, and know that you can do it. Smiles to all and donut daze! #Autism

Post

Does anyone else with hemihyperplasia have chronic pain? I swear part of my pain is connected to it, but I can't find anything talking about a link.

#ChronicPain
#Hemihyperplasia

1 comment