What We Ate:
- Pumpkin mini donuts – made with real eggs instead of flax eggs and honey instead of maple syrup
- Egg Salad with homemade mayo
- Pumpkin Seeds
- Apple Banana bar
Some days I just feel like I am failing as a mother. I read these books about kids like my Mr Rockstar and they say things like “You need to be the break-wall in their life when the hurricane of emotions comes. The unmovable calm no matter what.” How can anyone do that when they are getting only 4 hrs of sleep every other night and dealing with what seems like a never ending storm of abuse, aggression and defiance? The times he needs me most to be calm are the times it is hardest to be. I guess it is God’s way of motivating me to “Pray without ceasing” because I need his strength every moment of those days. It has been a hard couple weeks. I know with the cyclical nature of his mood swings that if we stay the course things should be a whole lot better in a few weeks. But it is hard to tell if we are making any progress? when I know we have just reached a lull between storms. Hopefully now that I am collecting data we will see if things are slowly getting better …or worse.
Remember how it took Miss Princess 3 days of crying to finally eat the gluten free chicken nuggets? and when she finally did it was only with maple syrup for dipping? Well, tonight I reheated the rest of the gluten free chicken nuggets for the kids to eat along with the vegetable tian. Miss Princess ate a ton with spicy brown mustard (we ran out of regular mustard a couple days ago and I haven’t had a chance to run to the store)!?! She also tried a bite of mango and said she liked it. It is hard for me to believe only a month ago she would cry if we went to Wendy’s and got her chicken nuggets instead of McDonalds and she would only eat it with Sweet & Sour Sauce at McDonalds. She still is very cautious about trying new foods but she is learning it is ok to try something new.
I really enjoyed the vegetable tian. It had a lot of flavor but was light but still filling and satisfying even without meat.
Miss Tomboy woke up at 3 AM and 3:30 AM to use the potty. Mr Rockstar woke up at 4:00 AM and was up for the day. At 5:30 AM I finally decided if he was going to be awake and if that meant I had to be awake to we might as well start doing schoolwork. So at least we had his school work done by the time his sisters woke up. Mr Rockstar was hyper all morning and was increasingly getting aggressive and defiant.
At 10:00 I took Mr Rockstar to see his occupational therapist. He has been with this therapist for a year and a half and Hubby and I both really like and respect him. Last week Mr Rockstar fake punched (a serious punch that stopped just shy of 1″ from the therapists face) the therapist at the end of the session because he was unhappy the therapist was talking to me about Mr Rockstar needing to do chores around the house. So today the therapist sat me down and talked to me about how our society will tolerate almost anything dished out by special needs kids except aggression. As soon as aggression is displayed they go in a whole other category. And he went on about how Mr Rockstar is going to have trouble making friends, get beaten up at the playground, and we need to address it now before it gets out of hand, etc, etc, etc. I wanted to scream, “All I have been doing for the last 18 months is working on the aggression and defiance!!!”. It just made me feel defeated. Everything he had suggested we have tried and more. I know I can’t give up on my little guy but that doesn’t mean I don’t feel like it some days.
Once it was time to start the therapy session, Mr Rockstar decided to try and bolt for the door and had to be physically picked up by the therapist. This happened last week too (and seems to happen every couple months). I went out to my car because I have found Mr Rockstar usually settles down better if he doesn’t think I am in the building but I didn’t go anywhere because I had a feeling with the way the day was going Mr Rockstar might not make it through the entire session. Sure enough half way through the session the therapist came outside with Mr Rockstar. Mr Rockstar had decided instead of doing his handwriting work he would just cross it all out. He was saying things like “I don’t have to listen to you.” etc. We used to have more reward systems in place. I never was sure how effective they were. It seemed like on good days they didn’t matter, on bad days they didn’t matter, but on a rare ok day they sometimes kept Mr Rockstar from degrading into a bad day. All the incentives stopped over the summer. The reward was always a form of food, iPad time, or toys….none of which are good for him. I am going to try and restart the incentive program but I’m not sure what incentives to use. Any suggestions?
Once we were home I made Mr Rockstar finish his writing work he had refused to do for the therapist. He would write some, then poke holes in the paper, then write some more, then scribble, then write some more and tear a piece off. Finally when he was down to the last word he tore the entire thing up. So I drew up the entire handwriting assignment again and said he had to finish it before he could get lunch and we had to leave in 10 min to go to the allergist. He did it pretty quickly but at the last word he decided to scribble and say he couldn’t do it. Mr Rockstar is smart and capable , I just wish he would understand that he is just making his life harder with all this defiance. Sigh. I told him since he didn’t finish the work he couldn’t have egg salad (which he really wanted). He then was disrespectful to me at which point I said if he couldn’t be respectful then he could just wait to get his lunch until he had a better attitude. He started crying. I said if he would apologize I would give him his lunch (sans egg salad). It took 3 tries for him to do it without trying to scream at the end, intentionally say something silly or an incorrect word. He finally did it and got his lunch at which point he seemed to calm down some.
The allergist was great. I am so glad I found a recommendation from a friend. I was sure the doctor was going to think I was crazy bringing in my 6 year old for testing with such mild traditional allergy symptoms. Mr Rockstar has a small but pretty constant runny nose and gets a rash on his hands and feet in the spring…but that is about it. However, since I have horrible allergies and Hubby has some as well, the allergist said there is a 90% chance Mr Rockstar will develop allergies to something in his life. Also, the doctor pointed out as an adult we might be able to express certain discomforts and be able to track it to an allergy but as a child it is probably is just driving him crazy, causing poor sleep, and behavioral issues but he can’t verbalize what is bothering him. He thought allergy testing was worth a try. He said if the allergy is severe people can usually figure it out on their own. It is only with mild food allergies that you really need to do an allergy test. As I was talking to him I realized Mr Rockstar started with eczema on his hands about a week ago….right when I reintroduced milk?!? so maybe there is some connection. We are going to allergy test him starting in 2 weeks. It will take three visits to do an extensive breathing test, 60 foods, and environmental allergy testing. I don’t think it will be a silver bullet but at least we will have checked the “allergy testing” box off our list of possibilities. I would guess Mr Rockstar has a few environmental seasonal allergies and maybe if we know those and treat we will see some small improvement with sleep and behavior. Once we have all the data from the allergy testing we might try elimination diet round 2 especially if we find that we failed to exclude some problem food.
I learned a glass of wine before bed is awful for my heartburn. After a couple weeks off almost all caffeine, soda, and alcohol my heartburn at night has been so much better. Also, my geographic tongue and eczema is still better even after adding back milk and eggs. I am waiting to see if I have a big reaction to gluten or yeast. Whenever I read about yeast it sounds like ALL of my problems (allergies, asthma, heartburn, white patches on tongue, etc)…but I love bread so I have never been willing to try giving it up. I guess I have survived 3 weeks with no yeast so it can be done?
In the past when I would get little sleep at night followed by a rough day I would eat a box of cookies or a tray of brownies or something else high sugar for energy to survive the day plus a couple cups of coffee. The good news is with the diet none of those things were on hand today. The bad news is on the diet none of those things were on hand!?! I guess I need to learn other ways to relax and cope with exhaustion and stress than sweets and a glass of wine. Maybe I should start listening to Mr Rockstar’s Sitting Still Like a Frog: Mindfulness Exercises for Kids (and Their Parents) on loop on those days LOL.