Shower Time & Sleeping

Kevin and I have had progress with his shower time.  I would have to help him with shampooing his hair every night.  You know the usual problem getting it washed and rinsed out properly.  He would be stemming so much that it was hard for him to stay focused with the job at hand and most of the time I would be drenched from helping him.  Thankfully his shower is at night and I’d just change to my PJ’s.   This past week he’s been able to do it himself and seems pretty pleased when I’d tell him how proud I am of him when he was done.  I do believe in positive reinforcement, opposed to negative.  I still supervise to make sure he’s staying focused, but I think one day he won’t even need me to do that anymore.   I’m so proud of him and every small accomplishment he makes.  As for his sleeping pattern he’s changed there, too.   He’s become a teenager.  He gets up in the morning, but falls right back to sleep on the sofa and sleeps until about 10:30 or 11:00.  Then at night he’s wide awake, but his autistic mind is telling him its bedtime.  He’s funny at night because he’ll lie on the sofa watching TV saying “Goodnight” and start to giggle all bright eyed.  The only problem is he really does want to go to bed at 8pm and then he’ll lay there ‘til late at night tossing and turning.  I don’t sleep unless I know he’s asleep, so I was able to take his ½ Risperdal he was getting at 2pm and the ½ Risperdal at 6pm and combine them into one whole pill at 6pm.  I couldn’t do this during the last school year and I’m so hoping I can keep it this way.  Last year he’d come home worked up from a day at school and need just that ½ to help him relax.  In the past his doctor has changed his dosage around to help with sleeping issues.  Risperdal can make you sleepy and knowing this about Risperdal I tried the change to help him sleep at night and it seems to be helping.  The plus is that he can get through the day without that ½ in the middle of the day.   I did ask a friend of mine who’s an RN if it’s possible that as Kevin’s small intestines heal and he starts to absorb more nutrients and medicines if it could be possible that his dosages could become too high for him.  She thought it was possible, because it not washing out of his system like it use to.  That’s food for thought if you ask me.   We’ll just have to wait and see.

A very different week for Us

This week was the first time it’s been just Kevin and I at home for a whole week. His brother and Uncle went to Florida for vacation while we stayed home. As much as I wanted to go on vacation with them I had to work, so Kevin stayed with me. We did have a good time. We went to my mother’s for lunch one day, while my sister was there with her grandson who was visiting her. I dug out the boys old Thomas the Train set for the two boys to play with during our visit. It was fun to watch them play. Kevin would just get all the trains on the track and my great nephew would knock them down. Kevin would just smirk and put them all back on the track. It was amazing to watch Kevin’s reaction. I had thought he would get mad at his cousin, but it didn’t seem to bother him at all. Kevin seemed to really enjoy visiting with his cousin. I did discover one day that Hunt’s Ketchup is not a good idea for Kevin. I thought that just a little wouldn’t hurt. Ha! Later that evening he had issues. Nothing bad really happened, but there was enough of a difference for me to notice. This morning he seemed to be fine before I left for work today. Good thing too since my mother is watching him for awhile today until his respite worker comes to get him later today. All in all we’ve had a very quite week just the two of us. I can’t wait to see what his reaction will be when his brother gets back from vacation Sunday.

Wonderful Weekend with His Dad

Kevin had a wonderful weekend visiting his father and stepmother.  He was Mr. Talkative in the truck on the way home Sunday evening. They had gone hiking to one of the waterfalls on Saturday.   He told me he saw an alligator at first and I said “no you didn’t see an alligator.”  Then he said he saw trees and water.  That’s when his brother said they’d hiked to a waterfall.  I’m so jealous; it’s much too hot here to do any hiking.  I’m thrilled that they were able to hike.  Just before bedtime he started telling me who all he saw over the weekend; naming his dad, stepmother, stepsister, stepbrother and then all of the dogs.  Apparently someone had puppies, because there were a lot.  I said to him that’s a lot of dogs and he started counting 1, 2, 3, under his breath and then 8.  I’ve never seen him do that before.  He was so focused on it.  I was fascinated watching him count the dogs.  I almost forgot he showed me his boo-boos on his knees from when he slipped on the trial once.  He said they were dead and I explained no they aren’t dead just bob-boos. It was so funny to hear him say that and it also made me realize that he doesn’t understand what dead means.  Not something I want to get into right now with him.   In the mean time I was able to go out early Sunday morning to Barnes and Nobles and browse through the cookbooks.  There were a ton of them and after a while I was lost in Gluten Free Cooking.  I left there and went to Earth Fare to stock up on pizza crust and pretzels.  I’m so happy he had a good visit with his Dad.

Happy Belated 4th of July

I’m hoping that everyone had a safe and wonderful holiday.  We ate until we couldn’t eat anymore.  It was one of the most relaxing holidays.  Kevin hung out in the hot tub which was turned down to 93, while watching his brother light fireworks in the backyard.  Thankfully the day wasn’t too unbearable for us to sit outside on the patio.  To my discovery Kevin has lost some weight, which is a really good thing.  He had put on weight over the winter and I noticed it during the Special Olympics’ Swim Event.   His bathing suit was way too small and unfortunately there was nothing I could do about it that day.  I had bought him a larger size not long after, because I knew we would be hitting the pool soon at a friend’s house.  The past couple of times going to the pool I noticed that Kevin’s new suit was too big.  Yesterday I decided to try his old suit on him and guess what.  It fit!  I was so thrilled to find that he had lost some of the weight he’d put on over the winter.  His doctor at his last visit had said he’d put on weight and she wasn’t surprised at all.  The Risperdal will make you gain weight and it wasn’t the first time he’d gained it like that over the winter.  I’d just like to have him not go up and down on his weight like that at all.  I’m hoping that reducing the Risperdal that will help with his weight issues and there won’t be any more fluctuating during the winter months.  What a wonderful 4th of July gift for Kevin and myself.

What a difference a Day Can Make

Maybe I shouldn’t be celebrating so soon, but this morning is so much better than yesterday morning.  Yesterday morning Kevin woke up at 5am going through all kinds of fits.  I got him his medicine and had him go out in the living room, so he wouldn’t wake his brother.  I had no idea what had caused this mood swing.  He did sound stuffy to me, so I gave him a sinus pill and made him something to eat.  After an hour or so he fell to sleep on the sofa.  I weighed all the ideas in my head as to why he woke up that way.  Maybe he didn’t sleep well and was just cranky, but this was too much like the old days before going gluten free.  I have reduced his Risperdal by ½ a pill and I felt sure it wasn’t that.  I can usually tell within a few days if a new dosage is going to work for him even though the doctor always says two weeks and it had been a full week on the new dosage.  Then I remember a conversation with a mother years ago at Coffee Time, which is a get together for parents with autistic children.  She had made the comment that it can take a few days to see the effect of casein or gluten proteins.   She was talking to me about the diet her sons were on and I just brushed it off.  I wasn’t interested in going that route with Kevin.  After remembering that conversation I went to the internet and double checked what she had said to me years ago.  Sure enough it can affect him two days later.  What happened was my brother made cinnamon rolls Sunday morning.  Boy, did they smell wonderful.  Kevin was still sleeping and the last one up.  There were two left and I was feeling guilty for not wanting him to have one.  So, I decide to give him half of one (they were small).  I thought it can’t hurt; it’s such a small amount.   He’s had no gluten for a week and half.  I had been reducing it out of his system again, because he had trace amounts earlier in the month.  He had been doing so well once I’d reduce the gluten out, so I can’t help but wonder if the ½ cinnamon roll was the reason for yesterdays fit in the morning.  I’ll just have to watch him and see how he does the rest of the day.  So far he seems fine.  On a lighter note, Kevin’s respite/teacher worker stopped by to have me sign papers.  He was in the hot tub relaxing.  Yes, a hot tub.  I have it turn down in the summer for him to relax in and if I want to use it I just turn it up a little.  Anyway, she left and when I turned around and look at Kevin he had this odd look on his face.  He looked at me and said “Well?”  I laughed and explained that she would come by another day to take him out.  He seemed fine with that and went back to floating around in the hot tub.

The most balanced diet in my house

I just found out that a friend of mine has to go Gluten Free, because of medical issues.  I’m hoping that if I write about what Kevin eats it will help her with her own changes that she has to make to her diet.  Kevin probably has the most balanced diet in my house.  In the morning he’ll generally have fruit (banana, apple or orange) along with toast or waffles if I’m not fixing a big breakfast.  I try to get blueberries or strawberries when they’re on sale for his waffles just to make them more fun for him.  The boy loves his fruit.  Everything here is gluten free and I found that the gluten free bread has more protein than the old white bread I use to give him.  If I fix a big breakfast its eggs, pancakes (Gluten free again) and bacon or link sausage.   I was so happy when I found out he’d started eating eggs at his Dad’s house.  It makes it easier when we go to breakfast.  I just make sure he doesn’t get any toast when we’re out for breakfast.  When lunch time rolls around it’s about 11:00am in my house that’s if I don’t make a big breakfast and it’s usually sandwiches or hot dogs with chips or French fries.  The reason for the early lunch is because of the boys lunch hours at school.  Kevin’s has been around 11:00am for as long as I can remember.   Now, I have to say that Kevin doesn’t eat large meals.  It’s more like he eats small meals throughout the day.  Around 3:00pm it’s snack time.  That can be more fruit, Greek yogurt, ice cream or popcorn, which I make on the stove top.  I made it that way once for him and now it’s the only way he wants me to make popcorn for him.  I start dinner about 5:00pm and just before I start I’ll make Kevin and myself a salad.  Lately our salads have been with lettuce, tomatoes, carrot chips and sunflower seeds.  One night I added strawberries.  Talk about a salad that was good.  Dinners have become a lot easier now that Kevin eats beef.  Growing up it was always chicken.  I introduced pork one night.  Just sat back and waited to see if he’d eat it.  Ha!  He did without even blinking.  Then one night I found out he’d had steak while visiting his father.  Thank you! He still won’t eat hamburgers, but that’s ok.  At least he’ll eat roast beefs or London broil.  For the longest time he’d gag looking at cooked green beans, but a few weeks ago I put them on his plate without saying anything to him.  After dinner I realized they weren’t on his plate, so I tried it again a few days later.  He ate them.  Dinner’s use to be the hardest time for me trying to figure out what to give him.  Kevin did not like any cooked vegetables at all.  Corn was it!  Fresh green beans out of the garden were fine, so long as they were not cooked.  And because of the fact that he wouldn’t eat cooked vegetables I’d try my best to come up with something good for him to eat with his dinner like grapes.  But you can eat just so many grapes.  I’m so thankful his taste buds are changing and I think they’ll change even more with this diet.  After dinner no more snacks and no caffeine drinks for Kevin at all.  They will keep him up at night.  I don’t even buy any drinks with caffeine in them for the boys anymore.  I like my sleep and if Kevin isn’t asleep I can’t sleep.   No, hard fast rules here other than the caffeine and no gluten.  Just lots of fruit and vegetables and one more thing no multi-vitamins.  Several have gluten in them from my understanding.  Watch out for gravies, soy sauces and malt vinegars.  Good Luck! 

Mistakes, Trails and Tribulations

Mistakes, trials and tribulations are the only words that come to mind for the past couple of days.  Saturday Kevin had a meltdown.  One of the worst ones he’s had in a long time.  It took a while but my brother and I got him through it, but I needed to know or understand why it happened.  I hate just saying it’s his Autism when there was nothing different for him that day.  Usually I can find a reason if I look hard enough, so Sunday morning I did some more research.  Everything I have been reading has been based on Celiac Disease and trying to understand gluten.  Not a lot of the Autism & Gluten issues are covered in the book I have.  I found a book for Autism and ADHD going gluten free and discovered that I was suppose to remove the gluten slowly.  You treat it like an addiction which was my mistake again.  I had read about the addiction in the book I have, but never thought about how fast I was removing the gluten from his diet.  So, the trails on Sunday were giving him pancakes with gluten.  It was unreal.  All day long he was fine.  Monday rolls around and he had no gluten all morning.  Around 1:30 that afternoon he started to have another meltdown.  I saw it coming and gave him his medicine a little early.  Unfortunately, it wasn’t going to get into his system in time to help him, so I gave him a handful of croutons with gluten.  Before I knew it he was his normal self.  Again today at the same time he was starting to go downhill.  I gave him only 3 croutons and so far he’s been able to manage with just those 3 croutons.  I guess that’s my tribulation.  What I don’t want is for him to figure out that if he has a meltdown he’ll get gluten.  Tomorrow I’m going to try to give him his afternoon medicine an hour early and see if we can get by with just a little gluten on Friday.  Keeping my fingers crossed.   The good news is I just found out that Kevin can start with his Respite worker any day now and she just happens to be his teacher.  So, we’re going to sit down, go over the calendar and see what days she has available to work with Kevin this summer.  One prayer has been answered.  Thank you.

Is it Withdrawals, Regression or just Kevin

The past two afternoons for Kevin have been very much like before he started the Gluten-Free diet.  It’s only been 2 ½ weeks for him on this diet, so it may be just Kevin.  It’s not that he is having any of his mood swings.  It’s the ticks that he has that can control him at times.  Mostly they are noises he makes and throwing his arms around or up in the air.  They aren’t harmful to anyone, unless you’re walking by him and get bonked in the head.  He’ll say “sorry” and keep on going with it.  I still think the ticks are related to his medicine, because his doctor has in the past changed his meds (upped them) for two weeks to break a tick that is consuming him.  It’s hard as a mother to sit back and watch these ticks control my son and I still have hope that this will help him.  I’m waiting for the day his teacher says he isn’t making his noises anymore.  I should also explain this.  His ticks were always worse as the days progressed.  His doctor referred to it as sun downing to me once.  I remember my grandfather who had Alzheimer’s would always get worse at the end of the day, too.  Another factor for my grandfather was the heat and I’ve always noticed that Kevin had the same issues.  When it is really hot he gets crankier.  We all do for that matter, but for Kevin it can turn into one of his mood swings.

On a good note, Sunday morning he was a pistol.  We went to breakfast and he had us cracking up.  I carry a note pad for him to draw on while we wait for our food.  He was drawing fish and I was guessing what they were or asking him “what’s that one.”  After a while he would draw one and look up at me with this smirk like ok guess.  I thought for sure I had one and said octopus.   Nope it was a jellyfish!  He thought that was funny.  Boy, it was so nice having him mess with my head like that.

Gluten-Free Croutons for Kevin

We like to eat salads at our house and the first thing to disappear is the croutons.  Unfortunately Kevin couldn’t eat the croutons anymore and his salad looked lost without them.  I started searching for a gluten free recipe for croutons.  Let me tell you there are a lot of recipes out there for gluten free foods and I had no problem finding some for Kevin.  Most were cooked on the stove in oil and I’ve never had any luck with making regular croutons like that.  Yes, I like cooking. That would surprise a few people I think.  Anyway, I found one that you bake in the oven and thought let’s give that one a try.  Oh man they were good!  I’d give you the link for the recipe, but I had to tweak it a little.  I have to warn you I didn’t measure, but this is close to what I did for the gluten free croutons.

Preheat oven to 275⁰

Cut 4 slices of Gluten Free into cubes (I use ends, too)

1/3 cup of Olive Oil

1 or 1 ½ tsp of Italian seasoning

2 tsp of Parmesan Grated Cheese (I use Kraft)

Cut the bread into cubes and place in a bowl.  In my measuring cup I mix the olive oil, Italian seasoning and Parmesan cheese.  Pour this over the cubes making sure to coat the cubes really good with the oil.  Bake for about 30 minutes or until golden brown.  Turn off oven and let them sit in the oven for 30 minutes.  Take them out, let them cool and then seal them in an air tight container.

Hope you enjoy these.  I know Kevin and I love them.

Kevin's Tie Wrap

Kevin carries this tie wrap from my Avon boxes everywhere.  For the past two days he has let me put it in his book bag before he heads out the door for the bus.  His teacher has been trying to get him to let her hold on to it for a while at school and he was fine with that last Friday, but not Monday.  Today I decided to see if he would be willing to leave it at home and I told him it would right there on the coffee table when he got home.  He said ok.  Then I found out his teacher, who has a back up in her desk, would not be in today. lol  She texted me to let me know that the assistant in her room knows where it is, so hopefully he'll remember it's there if Kevin seems to need it.  Keeping my fingers crossed this morning.

Going Gluten-Free with Kevin

I decided just before Mother’s Day to try the Gluten-Free diet with Kevin.  I had bulked at this diet any time someone asked me if I had tried it with him.  Every time they’d asked they’d go into dairy products.  Does he eat a lot of cheese; drink a lot of milk, and so on.  They’d also ask does he have any bowel problems constipation, diarrhea and stomach problems.   Kevin didn’t fit those areas.  Shoot Kevin is hardly ever sick and if he is it’s for one day and the rest of us have it a week.  So, what made me change my mind?  One simple answer, Pizza.  I always knew he was getting a lot of wheat, but this year at school he started eating pizza everyday and would not change for anything.   I saw the prices for the gluten-free breads and thought “No Way!”  But, you know how you can have that little voice nagging at you in the back of your mind?  Well, I did and it would not go away.  It kept saying “He eats a lot of pizza!”

                This is not an easy road to take.  I don’t have the money to spend feverously by any means, but I have to try it.  The first couple of days I saw better eye contact and he was saying a few more words.  Kevin is not a conversationalist at all.  There are days when you can only get a few words out of him and others he’ll answer you right away.  But this was different.  He came off the bus one day saying something about dogs.  I asked him what he did at school like I always do and he started to say he had pizza, but stopped himself and said sandwich.  I asked him if he had gone on the computer and he told me Animal Kingdom, lions, tigers and bears.  I laughed and said “Oh my.”  Then we had a setback.  I think I gave him some gluten without realizing it.  I’m still learning and don’t know all of the additives to watch out for.  I noticed he was waving his arms around more than he had been in the past few days.  So, I checked the rice snacks online and they weren’t listed as a safe food.  Hmmm.  I did more digging and found out that he was still eating gluten for breakfast at school.  Thankfully, his teacher has been great to work with and said she’d make sure he didn’t eat any biscuits or pancakes anymore.  Have I said this is not easy? J  In the mean time I emailed his father and told him what I was doing.  Kevin visits him and his wife quite often and I needed them on the same page.  This past weekend he came back from his visit and the whole way home he could not stop waving his arms around.  I really wanted to cry, because I thought this was going to help him.  I guess I should explain my goal for Kevin before I go any further.  Kevin has been a meds since the age of 12 for agitation.  He’s currently on Prozac, Ativan and Risperdal.  Over time the side effects from the Risperdal have become nerve racking.  Unfortunately it’s the one med that helps with his agitation.  The doctor has tried several different meds with him and he’s had to go off of Risperdal for a year when it stopped working.  The only thing that worked was Geodon.  The side effects of that were worse and I was so happy when we were able to change him back to Risperdal.  Mind you not everyone is affected the same way by these meds.  But, when his doctor said a few weeks ago that he would be on Risperdal the rest of his life I thought “Not if I can help it.”  That was my changing point.

                Back to his visit with his Dad, it turns out they had grilled chicken with Teriyaki Sauce.  They’d also made him a salad with a dressing.  Some dressings have gluten.  At this point I don’t know what dressing he had on his salad, but I do know that Teriyaki Sauce has soy sauce in it.  Soy sauce is a no, no and they had no idea at all.  Like I said I’m still learning and they’re even newer to this. 

It’s depressing at times and I don’t know how long it takes to really know if this is going to help his mood swings or not.  That’s what I call his agitation.  It just sounds better to me.  Everyone has them and some of us have them a little worse than others.  So, bear with me folks as I take this journey with my son.  A whole new week is starting and I feel like I’m starting over.  Wonder how many times I’ll think that. J

May 16, 2011

http://www.gfcfdiet.com/TheBigFAQ'S.htm

If gluten removal is followed by a deterioration or regression (a withdrawal-type response), stay the course! It almost certainly means that your child will benefit. This may seem like a lot of work for an uncertain payoff, but in the lifetime of your child it may be the most important step you take!

But my child's immune system seems to be working unusually well - he is rarely sick.

What we're describing is not an immune deficiency, but rather an immune dysfunction. Many (although not all) seem to share a history of ear infections and spitting up as babies (possibly milk-related), or of chronic diarrhea, constipation, or loose stools (possibly wheat-related.) Other parents note that their autistic children seem to be the healthiest members of the family. In this case, it has been hypothesized that the immune system is too aggressive and ends up turning on the nervous system. This may explain the presence of anti-myelin antibodies in some children, and may also explain why some have immune issues like multiple allergies but do not respond well to dietary intervention.

The coolest thing just happened.  I had gone outside and lit the fire for dinner.  Our dog Angel, who I often call Puppy, had followed me out.  When I came in she had stayed outside and I didn’t realize it until I heard her barking.  I said “Did I forget the dog outside?” out load, but really to myself.  Kevin got up to let her in.  Kevin doesn’t do that on his own, but that’s not the best part.  She wasn’t at the door.  She was out wondering around in the backyard, so Kevin decided to call her.  Very softly he was saying “Here Puppy, here Puppy, come here.”  Several times mind you.  I was shocked and tickled watching him.  I walked up behind him and told him to call her a little loader.  He did.  Not a lot loader, but it was loader.  He was trying to clap his hands and at one point he tried to whistle with his two fingers.  I can’t even do that.  Jeff, my brother, got up to see what was going on.  He couldn’t believe Kevin even opened the door to let her in.  Well, Kevin stayed there calling for Puppy until she finally showed up from her wanderings behind the shed.

May 17, 2011

I can’t help but to think that this is working for Kevin.  He’s still doing his arm wave, but a little while ago he was pacing around the house and I said “I have something for you.  Do you want to see?”  Kevin’s reaction was “Uh-Huh, of course.”  I pulled the box of Blue Bunny Sweet Freedom Krunch Lites out of the freezer and while Kevin was twisting his head around to get a better look at the box he said “What’s this?”  Krunch Lites were a big hit and the distraction of the treat helped him to relax for a few minutes.  My understanding is that between the Casein Free and the Gluten Free diet I have picked the harder of the two diets.  Let me explain that Casein is a protein found in some dairy products, where as gluten is a protein found in wheat, barley and rye products and the range of foods to be eliminated with the Casein Free diet in much smaller than the gluten free diet.   And please forgive me if I repeat myself or if I forget to explain something fully.  As I’ve said I’m learning, but luckily there’s a wealth of information out there for all of us to read.  I started with “Living Gluten-Free For Dummies” by Danna Korn.  I’ve also found that many stores have posted lists on their web sites of products they carry that are gluten free. I do have to add that when Kevin told me about going on Animal Kingdom today he said “Loins, tigers and bears oh my!” and then he went into his usual rendition of animals and dinosaurs.  It was the “oh my” that I loved hearing.