My Easy Button Child

I say this with caution, because I don’t want it to seem like I am saying I love her more (I don’t) but Selah is a much easier child to raise than her brother. I can turn her loose in a playground without worrying she will run off or hurt another child. I don’t flinch when she raises her arm around me. She hit her milestones on point and communicates very well, which makes life a lot simpler. She’s gentle and compliant and wants to be helpful. And she’s also extremely funny and just a joy. 

My fear with her is that since she was so easy she would feel overlooked since Korban has so many needs. She doesn’t seem to feel that way, and we’ve tried really hard to make sure she has her own activities and we spend time just with her. That’s one of the main reason I homeschool her—so we will have a few hours out of the day just me and her. 

Selah always just seemed healthier and stronger than Korban did as a baby. She had her share of sickness like any child does, but nothing like what he went through. As he has gotten older his health has thankfully improved. He has primary immune deficiency, and required treatments for that until last year. He has been under close supervision from his immunologist, but his levels have stayed good and he hasn’t required additional treatments. 

Selah has actually been sick more than he has this year. A couple of months ago she was getting ready to go to her jiu jitsu class and she came and told me she didn’t want to go. Very unusual for her, because she loves jiu jitsu. I asked her why and she said her ear had just started hurting. Brad had to go to a board meeting that night so we decided he’d go early to take her to the urgent care clinic that was still open. We debated on taking her, but decided that she was probably getting an ear infection and didn’t want to put off having a dr check her. So they went on, and the dr said she definitely had an ear infection. Brad got her script filled and took her to his parents’ house while he went to his board meeting, which was just around the corner. They text him during his meeting saying she was inconsolable and they were worried. They never do that, and Selah is generally calm, even when she feels bad. Brad left immediately to go get her and found her screaming in pain. She was calm again by the time they got home but I figured I knew what happened. I looked at her ear and she had fluid and junk pouring out of it—her eardrum had ruptured. 

I took her to her regular dr the next day for confirmation. She even let me look at it. Selah’s eardrum was a raggedy hole. Ugh! We added ear drops and they scheduled her with the ENT. It was scary because it happened so fast. She went from perfectly fine, to “oh my ear hurts a little,” to screaming in pain as her eardrum ruptured all in a manner of hours. Her dr said it just happens that way some time. 

The ENT got her in quickly and said we’d just watch it, that they typically heal up on their own. Selah sighed and said “I’ve seen THREE doctors over this ONE ear!” Ha! We went back in a few weeks to the ENT for a recheck. Her eardrum was looking much better. The audiologist did a hearing screen, which she passed, so thankfully her hearing wasn’t damaged. 

The dr did say it was unusual for ear infections to persist in an older child. She had two sets of tubes when she was younger. He thought maybe it was allergy issues so he started her on Zyrtec. I explained about Korban’s immune issues and that during our genetic workup they found out I was a carrier for immune deficieny. He thought it would be best to have Selah tested so over the summer Brad took her to the local hospital and they drew some blood to check. She did not love that whole process. 

We went back to the ENT last week. Her ears looked great but the blood work showed that her iGA was low. He recommended we see an immunologist and referred her to the one Korban sees, whom we love. As it turned out, Korban was already scheduled for a checkup this week so they were able to add Selah on as a new patient and see both of them. Specialists hardly ever get somebody in that quickly so that was a big deal. Also, it’s about a 4 hour drive from our house so getting both kids seen the same day was a huge help. 

That all happened last Thursday. On Saturday night Selah said “My mouth hurts.”  I flipped my iPhone light on like a true Dr. Mama and shined it in her mouth. Her gum was all swollen up by one of her back teeth and looked red and painful. She said it had felt funny for a couple of days but it just started hurting. On Sunday Brad took her back to Express Care and got an antibiotic for her tooth, which was abscessed. I called her dentist first thing Monday and he wanted to see her on Thursday. They were able to do it at 9:00 in Oxford and then we would drive on to their immunology apt in Madison. 

Brad took off work to help and we all got up early and headed to Oxford. Brad, Korban and Jet went to get gas while I took Selah in to her dental apt. They wound up having to pull her poor tooth but she did really well. She cried a lot afterwards when the feeling came back. 

Look at that little face! I felt so bad for her. The dentist told me the roots broke off and he had to dig them out. When I was explaining this to Brad she overheard and said “What do you mean roots? I’m not a tree!” We cracked up. She settled down as we drove and was feeling much better by the time we got to Madison. 

We love our immunologist and the kids were glad to see him. He comes in carrying a basket of treats. Korban picked a water gun and so did Selah. I guess she figured she’d need to defend herself. 

Both kids did breathing tests. Korban couldn’t quite get the hang of it so we didn’t get test results for him. Selah did the test, took a breathing treatment, and then did the test again. She just needs a rescue inhaler because she wheezes when she gets exerted sometimes. Both kids also had to get blood drawn. Korban handles it like a pro now, which is probably a miracle. I can’t believe this is the same kid I used to have to sit on so they could get his IViG started. He went first to show Selah how it was done and she climbed up on the table beside him and held his hand. 

Isn’t that the sweetest? 

She was nervous for her blood work and cried a little. Brad asked if they had anything to numb it with and they had a cold spray. We called it “Elsa breath” and she thought that was hilarious. She didn’t want any of us to hold her hand while they drew her blood but she held her daddy’s elbow. She got her own style. 

We were there for several hours but the boys were quite chill. 

Selah was in a good mood despite all she’d been through. 

 After we finished the apt we went to eat at Chili’s. Selah had barely eaten anything all day but her mouth was feeling better and she ate really well. 

Obviously. 

We didn’t have time for a museum or anything fun, so I ran into Target to get them a treat off the clearance rack for being so good today.  I do love a good Target. I found this gem for Selah: 

No matter what kind of day you’re having, Star Wars always helps. 

She also got a squishy toy and a Little Mermaid fidget spinner. I got 0 pics of Korban’s happy, but he got tiny keychain flashlights which made him so happy he vibrated, a squishy ball he wasn’t impressed with, and a Funko Pop Supreme Leader Snoke that I scored for $2.48. Selah said he was ugly and Korban absolutely loved it. Yay for Target clearance! 

Selah’s a tough little cookie, animal expert, and the best sister ever. We should get our test results next week. Our little easy button could use your prayers and so could her big brother. 

For The Moments I Feel Faint

Korban started another school year (6th grade!!!) on Monday and is doing very well. He has a new teacher this year and new students in his class so I knew it would be an adjustment. He likes his new teacher a lot and one of the aides he is close to is still in his room so I’m very thankful for that. He was anxious to meet his new teacher at open house but once he met her he settled down and was excited to start school. 

Monday went well. I picked him up at 10:00 because we had therapy from 10:45-3 in Corinth and he’d done well and had a good day. Tuesday he was scheduled until 12:00 and was supposed to eat lunch in the cafeteria. That was a huge deal to us because he has not eaten lunch in the cafeteria since his kindergarten year, and it was a huge trigger for him then. Sometimes he would scream in the cafeteria, or act out, but a lot of the time he would hold it together until they got back to the room and then lash out at anyone and anything. He threw a chair across the room one day after lunch. It was major. So that was when things were so bad we did homebound for awhile and his teacher came to our house three days a week and the other two days I took him to the school and stayed with him while she worked with him one on one. We did that so he would still remember the school and be in a routine of going so that we could slowly build back up. 

Those were really hard times but the school really stuck with us and his teacher was amazing. He had his own little room at the school that we worked with him in and I remember one day he got really upset with little warning and suddenly turned and clawed my cheek so hard blood started running down my face. I was generally pretty good at being stoic but that day I burst into tears and ran and locked myself in the staff bathroom, leaving his teacher to deal with my screaming child. She handled it like a boss and still loves me so it’s all good. But until you’ve locked yourself in a bathroom at your kid’s school sobbing and bleeding you don’t know the struggle. (His teacher also knew this struggle. She got more than her share of scratches and bruises and somedays I would pick him up and wads of her hair would be in the trashcan from him pulling it out. It was a dark time.) 

I said all that to say, we’ve come a looooooong way since then, thankfully. We still have our struggles of course, and some days are harder than others but progress is a beautiful thing. When I went to pick Korban up Tuesday, the principal waved me into her office and was so genuinely excited because she had seen him in the cafeteria holding his tray and acting all calm and grown up. I could’ve cried. (But in a good way, not a lock myself in their bathroom kind of way.) 

I got him from the aide  and she said he did great. He ate his chicken quesadilla and asked her for another one. Ha! I had written a note explaining that it could go one of two ways—either he wouldn’t eat anything or he would eat it all and ask for more. I told them if the latter was the case to just tell him mom had more food at home. She told him just that and he was fine. He also ate his chips and salsa from his tray at school and drank his milk. And he ate again when he got home because he’s a hobbit. Brad said “We need to explain to him that the school cafeteria is NOT a buffet.” We’ve laughed so hard about how things have changed and how once he remembered they had food up in the school they may not be able to get him to do anything else.  

He did well at lunch on Wednesday too, although he didn’t eat very much. That’s definitely ok because it’s not like he’s malnourished or anything. He did get cranky with me when we were trying to leave because he wanted this pencil he had left in his room. He loves to sharpen pencils down to nubs and then hold onto them. I was trying to tell him to leave that in his classroom because he had one at home he’d brought from school the day before. He got pretty loud in the hallway but he finally settled down and left with me. On the way out he said “CAN I CUSS?” Dude, no. 🤦‍♀️😂 I told one of my friends about that and she laughed and said that might be her new motto. (For anyone who’s wondering, he knows exactly two cuss words that he periodically belts out and embarrasses the mess out of me, so at least he asked that time.) 

Today they contacted me to say he was really overstimulated and they weren’t sure he would do as well in the cafeteria so I made the decision to go on and get him. I want to set him up to succeed and not put too much on him. If he was already struggling, no sense in ruining a good thing. I told Brad the other day that I feel like we are constantly walking a tightrope between not holding him back and underestimating him  and pushing him too hard. But I feel like between the two of us we balance each other out fairly well and get fairly close to a happy medium. I hope so anyway. 

So I picked him up and he really was overstimulated. He was trying to wiggle out of his seatbelt and lay down in the backseat and just being wild. He kept aggravating Selah and being loud. I finally got him settled down and got both kids lunch and then finished up Selah’s schoolwork for the day. She had an appointment with her ENT at 2:00, and Korban was going to stay with his Mamaw while I took Sis to the dr. I had fixed myself a cheese quesadilla for lunch but let it sit on the stove and get cold while I finished lessons with Selah. I figured I better scarf it down before we left so I asked Selah to walk her dog Roxie in the back yard while I ate. 

I took my food out on the porch so I could hear them. Korban asked if he could walk with Selah and she said yes and I did too. He had calmed down considerably. They walked behind the house and I sat on the porch and munched my quesadilla. In a few minutes Selah rounded the corner and said “Mom, I think you need to come look at Korban.” 

I should mention that last week we had to have our septic tank replaced. So there was a lot of dirt in our backyard. It’s been pretty dry but we had a big rain this morning while Korban was at school. I wasn’t thinking about any of that when I turned the kids loose in the backyard. I was just thinking about lunch and getting on the road. I rounded the corner and saw this. 

Can someone make me a shirt with “CAN I CUSS?” printed on it? 😂😂😂

I made him strip down on the porch and then I gave him a good scrubbing in the tub. Even with that I still managed to drop him off (clean!) with his Mamaw and make it to Selah’s apt five minutes early, which is a miracle. I guess we got bath time out of the way early today. 

Today was a bit of a setback, but I’ve made it through much, much worse. The aggression and self harm was honestly the hardest thing we’ve ever dealt with and I’m so thankful that has been loads better the past year. His aide saw I was concerned today when I picked him up and said “Oh don’t worry, it wasn’t like it used to be.” Whew! I felt like I could breathe again. 

What some people don’t understand is sometimes you can work and work and work and still only make limited progress. It’s both exhausting and terrifying, to give your best and it not be good enough. He was diagnosed with autism at age 3 but he started therapies like OT and speech when he was two. He started getting ABA (behavioral therapy) when he was six through the school. Before that I drove him back and forth to Tupelo to the Autism Center for ABA several time a week for close to two years. We do prescription medicine and alternative treatments like supplements. We have a service dog. We work hard.

 

Just an example—Korban has this horrible, ear splitting scream he does when he’s upset. I’ve never heard anything like it. If you heard it out in public you would immediately notice and be alarmed. And he’s done it in public plenty of times. Six years we’ve worked on this behavior with his therapist. Six years of saying that if he had to scream he could scream in his room but no where else. Six years of trying to give him other ways to cope. And after six years, this summer he got upset while we were out and looked at me and said “Can I scream in my room when I get home?” I said sure and he went on and managed to stay composed. He’s done that several times since. Sometimes he is fine by the time he gets home and sometimes he does go to his room and scream. But either way, I applaud his self control. I don’t mean he’s only been doing this particular scream for the past six years. He’s done it since he was about 18 months. I just mean we had tried other things that the dr who diagnosed him recommended, such as ignoring it and waiting for him to stop the behavior. Never did any good and if you heard him do it you’d swear he was dying and not just angry that his favorite flashlight needed a new battery or something. I mean we’ve been dealing with that behavior for over a decade, but we finally got behavioral therapy six years ago when he started school and have been working with a behaviorist to help him find better coping skills since then. 

Setbacks are hard sometimes, but he’s doing well overall and I am so so thankful. Some days are gonna look like this: 

While other days look like this: 

But either way, it looks better than where we’ve been.