Wednesday, May 29, 2013

Appointments

The doctor's office should have a frequent shopper card. Ten visits each month and you get a free pedicure. I would earn it every time! This is the best idea I've had all day... who is going to make this happen for me? ; )

Rylie: Autism Dr. 
The doctor treated Rylie's clostridia (bacteria/ c. Diff) infection with vancomycin. The script is $3,000 a month. Since Rylie has insurance it cost me $70. I think. Insurance didn't want to give me more than forty pills a time, which was a ten day supply. So I kept having to go back and renew the script, fight with insurance, explain to Walgreens, and pay another $30 or $40. Apparently vancomycin is a serious antibiotic; the nurse at Rylie's daycare looked at me wild-eyed when I told her she would need to take it 4 times a day, two of which at daycare. "Wow.  That's... that's usually in IV form...at the hospital." Welcome to my life. 

The treatment was rather scary at first and I considered stopping it after a week. Her diarrhea improved, but then suddenly got worse, with 8 messy diapers a day, and for two days they were dark black. Then they went back to a normal color, but very messy and still 5-8 a day. It was difficult to hang in there for a whole month, but she was a trooper, and by the end of the month you could tell she was feeling better than she has in a while. Her belly is definitely less distended now. Once the bacteria was gone she still had a little bit of a yeast problem, but with regular Saccharomyces Boulardii and probiotics she is now much improved. I don't think we have the yeast completely killed, but it's definitely more managed.  

The nurse tried again to do a catheter for her Organic Acid urine test at the last appointment, and once again couldn't get it in. : (  Poor baby girl. I'm supposed to continue with the cream she gave me to fix that issue. I really want to know what the OAT results are so I'm hoping I can get that done soon.


Rylie: OT (First Steps)
OT appointments are going very well. She is a great resource of ideas and I'm really glad to have her on board. She is working with Rylie to try new foods, brush her teeth and let the brush touch her tongue; use an open cup; play on the playground while other children are there; reduce anxiety; chew her food, move her food around her mouth with her tongue, and use her tongue to lick her lips.

Rylie OT Homework:
  • Lacing toys to practice fine motor
  • stack 10 small blocks
  • imitate a block design
  • imitate pick two blocks of the same color from a group
  • undress baby clothes
  • remove her own jacket, even zipper
  • memory (matching a group of 6 cards)
  • Uno Moo (matching just the same animal or same color, not both)
  • put tongue to right side of mouth and lick food off lip
  • lay food in center of her mouth and get her to move it to the other side, or put it to the back and work on her bite strength
  • does she suck her thumb as she sleeps?  Try to limit thumb sucking if you can, to just nap/night time
  • when helping her brush teeth, avoid the sides of her tongue, this is where she clams up.
  • serving size is 2T per year of each item, or package serving size if smaller. Limit fruits and juices and count sugars.

Hayden: Dentist
Hayden went to the dentist (Indy Kids Dentist) to fill a cavity and seal two spots. We found a great dentist who was very patient with Hayden and was willing to use conscious sedation instead of traditional methods. (Autistics tend to have trouble with sedation). At first his medicine hadn't taken effect, and he wouldn't even let them in his mouth. After about thirty minutes, an hour and a half after taking the sedation medicine, it finally kicked in and he let them do everything they needed. I was extremely grateful to the dentist for allowing me to stay in the room with him to calm and encourage him. She even called the Autism Dr. beforehand to make sure everything she was going to do was in line with Hayden's other treatment plans. I would highly recommend Dr. Stockton to anyone looking for a pediatric dentist in the Indy area.

Hayden Dentist Homework:
  • Work to get him to floss. Start with just flossing between two teeth, work up to all. 
  • Make sure to brush for him on his bottom front teeth, as he is missing these and plaque is building up. He wants to curl his lip over these teeth when he tries to brush them himself.
  • Try to get him to drink water instead of juice between supplements.

Hayden Autism Dr.
  • He is having lots of behaviors lately, especially after weekend visitation. Some of his behaviors are from allergy season, as pollen count is high right now. Add generic singulair, Take zyrtec consistently (5 mg a day), do nasal irrigation (saline rinse), and add quercetin.
  • His ears were red at the appointment; he had just eaten banana cake and apple juice. He may have a phenol sensitivity; bananas and almonds are phenols.
  • Some of his behavior problems are related to yeast, and we need to get it under control before taking the next step which is chelation. Ask Staci (dietitian) about upping his yeast aid dose. Add S. boulardi, move more to SCD diet: zucchini noodles, paleo bread;  if you cook spaghetti squash longer he may like the texture better. Start nystatin for at least a month and continue as you chelate, because chelation can make yeast worse.
  • start chelation in a month; if not doing well after three weeks stop the medication and check for possible vitamin depletion.
  • add coQ10, carnitine, and DHA for motor planning skills and motor strength (opening a door knob, for example, which he still can't do.)
  • continue with the sensory diet to help with motor planning (trampoline, bouncy balls, fidget toys, etc.)
  • research cerebral folate deficiency. Make sure he's getting folinic acid.
  • Have him wear headphones to mainstream class. He is probably reacting to the noise level but can’t verbalize it and instead melts down. Also speak with special class and mainstream teachers about his main triggers, so they will know how to help him avoid meltdowns
  • increase B12 to twice a day, try to get him to hold it under his tongue instead of chewing it, for better absorption
  • increase cortrex (adrenal support) to 2x/day
  • increase vitamin K to 5 drops twice a day
  • change carnitine to liquid so that he'll take it (he doesn't like it in pill form)
  • add vitamin E
  • We should do blood tests again in 3 months.


Are you exhausted yet? I am.  Who's with me on the Pedicure thing??

Sunday, May 12, 2013

How can I help? What do you need?

I get lots of people asking me, "How can I help? What do you need?"

Help. That's it. Just help.

Every parent has a thousand things they need to do, or wish they had time for. Single parents and special needs parents have more. I feel like I have too many, all day every day... it's never done. There's never any clean dishes, or clean pants. They don't always get their teeth brushed or take their medicine. They stay up too late because I'm trying to cook special meals, as I can't just swing by McDonald's and pick something up. Every week there's a new doctor or OT appointment, with someone giving me a list of three more things I need to do. "You need to get him to bring his teeth better. This is bad." "You need to get her to chew her food better. And you need to cut it smaller, or she could choke."  "You need to add this new $40 medicine that tastes terrible."

I blog when the kids are away with their dad, otherwise I don't do much for myself. Most of their weekend away is spent cleaning, cooking, shopping at three stores, and doing laundry. I usually take a few hours to watch some tv and relax, but then it's back to work. Usually what gets tossed is time for myself. Some days I feel like it will never end, and I can never get done what needs to be done, let alone anything I would enjoy doing.

I try not to complain. But sometimes you have to ask for help, and give specific things, or no one knows what you need. Well, here I am, giving specific things and asking for your help.

Anyone who wanted to volunteer a half hour or hour of their time to do any of the following would be greatly appreciated. This week, next week, next month, in three months. Come on over. Announced or not. Msg me on Facebook if you don't have my address.



Volunteer Wish List

Come over and help with the kids:

  • Rylie's OT homework: brush teeth (she doesn't like it), comb hair, help her put clothes on her baby, stack blocks, put food into the back of her mouth and chew with her back teeth, put food on her lips and use her tongue to lick it (she can't do this), drink from an open cup
  • Hayden's dentist appt homework: brush front teeth, brush rear teeth, floss (he won't do it), practice spitting (he swallows it), practice putting toothpaste on the brush
  • create a social story for something Hayden needs to work on 
  • read a book to the kids, or let Hayden read to you
  • play pretend with the kids
  • take the kids to the park 
  • give the kids a bath
  • pick up one of the kids from daycare



Come over and help with chores. Some of these just never get done because there's just not enough time.

  • empty the dishwasher
  • wash dishes 
  • wipe the counters and tables
  • vacuum a room
  • sort laundry
  • pick up toys for the millionth time
  • take the trash to the dumpster
  • pack boxes for the move
  • wash the sinks


Come over and help with vitamins, medicines, and special diets:
  • give the kids their day's vitamins from the chart 
  • help me organize my vitamins and lists
  • cook a food item, like hamburger, eggs, a veggie, bacon, Hayden's pizza
  • cut up fruit for Rylie
  • try to get Rylie to pee in a cup. She refuses. I've already paid a couple hundred dollars for the test.
  • help Hayden take all his pills for the day. It's difficult to get him to take them all each day. He needs constant encouragement to finish all 30 of them. I usually don't have time to keep asking.
  • pick up 1 or 2 things at the grocery, like special bread and cheese.




If you live far away and would like to help, Rylie and Hayden's Amazon Wishlist has common baking needs and vitamins that we go through quickly. Some months I can't afford to pay for all the vitamins and things they need, and they go without. They will survive without, but would be more healthy if I could do all there is to do. #MomGuilt  : )

I don't usually ask for help, so this is new for me. Every little bit counts, including all the kind words and thoughts sent my way. Thank you to friends and family near and far for the support, it's helped me do more than I ever dreamed I could. : ) Each day is a battle but it's worth it because it's working. 

Thanks, from us to you. 


Saturday, May 11, 2013

If you teach him what the rules are, he will play fair

Last night my Autistic son's baseball game was cancelled for the 2nd week in a row due to rain. Nothing you can do about that, but Autism parents know that the surest way to a meltdown is to promise a highly desired activity and then not go through with it. To avoid the meltdown, you must immediately replace it with an equally desired activity, or one they like even better.

For Hayden this means going to Chuck E Cheese. I know, a sensory nightmare. It puts me on edge just being in there: too loud, too many kids running around without shoes or their parents' attention, germs galore, food my kids can't eat, my daughter Rylie is deathly afraid of the Chuck E in costume... it goes on.  But for some reason Hayden really enjoys the games, and the sounds no longer bother him. Rylie likes the skee ball game and collecting tickets. They get a stupid prize at the end and everyone leaves happy.

Since Rylie is younger and afraid of the mouse, I follow her around to the games. I usually give Hayden two coins so that he has to come back to me after playing two games and get two more coins, so that I can keep my eye on him. Toward the end of our visit yesterday, Hayden waited patiently in line to play air hockey. Rylie wanted to sit down at the table nearby and play with her tickets. When the mom and son finished with air hockey, Hayden put a coin in and was ready to play but had no partner. Just then two boys rushed in and grabbed the air hockey paddles out from under him. I was ready to intervene for Hayden and explain that it was his turn since he had waited and had already put in his coin. But Hayden gently elbowed his way in and said, "It's my turn to play." I was proud of him for speaking up for himself, since this is a difficult skill for him. The other boy shrugged and stood in the middle. Hayden and the 2nd boy began to play.

Usually with the games there, most of the kids are younger and don't really worry about rules or playing the games correctly. They try their best, throwing, hitting and smacking the machine until their time runs out, then collect their ticket and move on to the next game. But these two boys were a little older, maybe third grade, and were very serious about winning the air hockey game. Since Hayden doesn't have great fine or gross motor skills, he was having trouble manipulating the puck if it went in a corner, so he kept putting the paddle on the puck to scoot it back to the center. Hayden was winning by 3 points. So Boy 1 who was only watching began to say, "You're cheating! That's cheating! You can't do that!" Hayden wasn't processing that the boy was talking to him. He just kept doing what he was doing, putting all his focus on the game and trying to hit the puck. So the boy kept saying it, getting louder, as Hayden continued to gain in his lead.

Then the boy took matters into his own hands. He began blocking his friend's goal with his arms across the table, and pushing the puck into Hayden's goal with his hands, now shouting, "You cheated so now I'm cheating! Ha! Scored against you! Ha! Scored again!" I allowed this to go on for a couple more minutes to see what Hayden would do. Hayden had no idea that he was being bullied. He was just getting increasingly frustrated that it was now much more difficult to score a goal.

And then it happened. My teacher/mom instinct turned on and I couldn't help myself. I walked right over and got down on the boy's level and quietly said, "Why are you doing that?" The boy immediately jumped back from the table and got the "Oh crap, I've been caught" look on his face. He knew he was being mean. He tried to look around for an escape, like he would rather be anywhere else but there. But I didn't let him off that easily. I said, "He has a special need. It's called Autism. He doesn't really know what the rules of the game are. He's not cheating, he just wants to play with you. If you teach him what the rules are, he will play fair."

Then I explained to Hayden the rule he was missing. "Hayden, you're not really supposed to put your paddle on the puck, or touch the puck with your hands. It's against the rules."
"Oh. Ok."

I stepped away and the two boys began playing nicely. Hayden no longer put the puck under his paddle and the other boy no longer interfered. They finished their game in two more goals and Hayden said, "I won!" I prompted, "Say good game."  "Good game," Hayden said. The other boys were bored with this game and went on to something else. Hayden and I went back to Rylie.

"Were those boys making you upset, Hayden?"
"No."
"You weren't upset that they weren't being nice?"
"No.  I need another coin, I want to play something else."

He never fails to amaze me. All he really wants is for other boys to play with him. Even when they're being mean, even when he knows they're being mean, he still just wants to play. I'm glad that he usually doesn't know that he's being bullied, because that feeling hurts, but it also makes him a more likely target: he doesn't tell on them and doesn't fight back. Most days I wish I could follow him everywhere he went and give all the boys my talk. But I know I can't.

So I hope that I can teach him that if others are being unkind, first you try to teach them how to be kind. Then you walk away, because you can lead a horse to water, but you can't make him drink.

Fortunately for Hayden, I think most boys will play fair with a child with Autism, if you just teach them the rules.