I was going to completely ignore the subject. But it has been affecting Hayden's life, and so it will need to be mentioned. At the moment I'll say that I'm grieving the loss of what I wish had been, and yet I am already a more confident person. It is going to be a messy divorce and has left me very sad. I feel betrayed and angry. I am going to counseling and it is helping. Right now I just need prayers for myself and my kids, that we make it through this next stage of our journey and become better people than we were before.
Today I took Hayden to his DAN Doctor (Defeat Autism Now). It was a great opportunity for me to ask lots of questions about his treatment. We talked about his anti-fungal and antibiotics, what supplements come in liquid and how I can more easily get him to take the new supplements; an alternative to the B12 shots (nasal spray), an alternative to the cod liver oil since he doesn't like it; how to get him to drink more liquids, what to do about his tummy hurting all the time, should I stop giving him Epsom salts to help his BMs, how to give activated charcoal, and which supplements to move on to next from the list she wanted him to add. We went over his blood test results, she checked the spots on his back (could be chicken pox, she's not sure; he's had the shot but apparently you can still get it in a mild form, which she said would be good for his immune system. It could also just be spider bites.) We discussed which shots I should give Rylie, including no MMR before age two.
I have been in contact with his school Cornerstone in regards to his behavior plan. I had concerns that they were encouraging his negative behaviors rather than stopping them. They have made some changes. I am waiting to see how the new plan goes for a few weeks before I meet with them again to discuss it. So far the changes look good.
I have implemented a star chart at home to encourage him to do things like brush teeth, take a bath, take his medicine, etc. It is going well. I started with only 10 stars so he could get a prize quickly. He was so excited about doing jobs that I made the next goal 30 (20 more), but that was a bit ambitious because he lost some enthusiasm after getting his second prize (another angry bird). The nice thing about the chart is that I'm able to use it to get him to do things he doesn't want to do. When he refuses to do something, I've never had anything to hold over his head (he doesn't care about anything being taken away, or time out, or things like that). Now I've been saying, "do you want me to take away a star?" and he does the request right away (take his medicine, clean up, get off the computer, etc.) I tried a star chart a while ago and he wasn't ready for it yet. I was afraid that was still the case this time, because at the end of the first day he was demanding his new toy. But we made it through that and he now gets the concept that he won't get his toy immediately, that he has to collect enough stars. I told him he would get 2 stars for going to the doctor today ; ) and two if he went poop on the potty. It worked to get him to eat some fruit the other day, too. So I'm pretty happy with it. I just need to make space for more things, or maybe make it task-related rather than day-specific (you could get three stars a day for medicine, versus just one for example.) Anyway.
When I tell people how much time I spend each night on the kids, I don't think they really understand or believe me. So I thought I would make a picture book about it. : )
bath (not every night because I just don't have time). I add 1/2 c of epsom salts at the start to help Hayden detox. It helps your body remove heavy metals and allergens, which Autistic kids' bodies aren't good at doing on their own. Often bath depends on how dirty the feet are, or how poopy the butts. : ) But at least once every three days or I'd feel like a bad mom. : )
feed Rylie . She usually has two bottles in the evenings and some type of finger food. This is apples in a mesh chewer.
give Hayden his allergy medicine and anti-fungal
make Hayden's "chocolate milk" with almond milk and four supplements in it (usually a multi-vitamin called Super Nu Thera, probiotics, an enzyme, and maybe calcium or something else.)
check each thing I give him off of his chart. Note any major behavior problems or illnesses.
These are some of his supplements.
give Hayden some fruit and hope he eats it between You Tube videos about Mario
make 2 bottles for this evening and 3 bottles to send to school. Each bottle has 6 oz water, 2 1/2 scoops of Alimentum formula, and 1 1/2 T rice cereal. You have to warm each bottle or it won't mix up.
Each bottle I send to daycare has to be labeled with her name, the date, and the time I made it (not my rule, theirs). I print them out ahead, but I still have to cut them and tape them to the lids each night.
I have to send two empty cups to daycare in his backpack each day with supplements in them. Otherwise I don't have time in the evenings for him to get all his supplements in. The one labeled milk has an enzyme and Super Nu Thera in it, because the enzyme is kinda yucky in juice. The juice one is either Super Nu Thera or Vitamin C.
Empty Hayden's backpack and lunch box. Usually has the notebook, a folder with his work, and two dirty cups.
respond to the therapists' questions and make my own notes in Hayden's journal that goes back and forth to school, and tell them about anything major in his evening (huge tantrums, illness, not eating or sleeping, big changes in language or development, etc.)
Put his anti fungal medicine in a baggie and label it so the therapists can give it to him at lunch. He has to take it three times a day.
Take the dirty bottles out of Rylie's daycare bag and (maybe) wash them. Usually they just end up all over the counter until Friday because I just don't have time.
Wake up Rylie
Play with Rylie
Play with Hayden
Lay out their clothes for tomorrow. This picture didn't come out well. We do have lights at our place, I promise.
Ignore pile of clean laundry that needs to be put away. Leave it right about there for another week.
Ask Hayden to brush his teeth. Hope it goes well because I don't have time to supervise.
Make a juice cup to put by the bed with a supplement in it. He wakes up nearly every night at 3 or 4 and wants a drink. I can't get the kid to drink anything, so this is a great opportunity to get liquids in him. If I make it before bed I can just reach over and hand it to him instead of having to get up and make it.
Label some Chicken Nuggets with his name to send to school tomorrow for his lunch.
Remind Hayden to keep brushing.
Pick up chair that Rylie's trying to climb over.
Figure out which kid needs a new diaper.
Change one or both diapers. (Hayden actually wears a pull-up.) I usually have to change a poopy one for both of them in the morning and at night, so 4 a day.
Ask Rylie not to eat the Lego door she found while I was changing Hayden. I don't usually let her in this room, as Hayden leaves his toys everywhere. The family room is "her" room where anything she finds on the floor should be one of her toys and therefore safe to eat.
Make dinner for me and Hayden: regular pizza and Gluten-free, Milk-free pizza. Make sure to use the pizza cutter to cut his before mine, or I'll end up having to wash 2 pizza cutters (because mine with wheat can't touch his food.)
Read a bed time story. These are Hayden's recent favorites from the library.
Tuck him in bed and let him play some Angry Birds so he'll get sleepy. Feed Rylie her last bottle and put her to bed. It's usually 8:30 by now, which is when I look for my cold dinner, reheat it, and eat in front of the tv for 10 minutes. Shoo, are you tired? I am. : )
Tomorrow is the parent meeting on nutrition. I think 4 whole people are coming, one being my mom, but that's better than the zero we had last time. : ) Maybe next month we can find a topic people are more interested in, who knows.
Bob moved into his new house over the weekend and we had fun getting together for a cookout. Hayden got upset when he accidentally threw the ball over the fence when playing with the dogs, but he just pouted instead of having a major tantrum about it.
Today on the way to the doctor he was asking Why questions: "Why do fish swim? Why do birds fly? Why is the moon so big?" He had to get his blood drawn today but he did well. I told him he was very brave when he was done, and they had an angry bird sticker he got to wear. When I took him to school he told his teacher, "I was very brave." I love in the evenings at bedtime when I say, "I love you Hayden" and he says, "I love you too, Mommy." He's an awesome kid. I am going to work on counting my blessings. : )