Friday, June 14, 2013

Friendships

Kevin developed a special friendship this year.  This was a big change for him.  He has never showed affection to anyone outside of the family other than hugging his respite worker whom he's known for years.  This friendship was with one of the girls in one of his classes that has Downs.  I think he's drawn to her because she quite and just seems to like him the way he is.  The sad thing is they won't be together next year at school.  The program at their school was closed and all the students are being moved to other schools.  She won't be going to the school that Kevin is assigned to for next year.  It was heart breaking the last few days of school knowing this.  I took Kevin in a few times the last week of school for meetings with his teacher and his friend's face would just light up when she saw him coming.  I decided to have Kevin give her one of his school pictures and from what I hear she basically did a happy dance when she saw it.



A week before the last week of school their class went on a picnic at one of the parks and I was told that the two just walked around the baseball field holding hands just enjoying each others company.  His teachers have all said the she seems to calm Kevin, too.  Interesting when you think about it.  I'm still hoping that she'll end up at his school next year.  You never know.
       

Wednesday, May 22, 2013

2013 Prom and Changes

First I want to say that Kevin had a wonderful time at the Special Prom at Rocky River High School.  I heard he danced!  Don't you just wish you could be a fly on the wall sometimes.  This year I decided to buy him a suit coat to wear.  The two of us went to Kohl's one day and he tried one a couple of different coats. I had thought of going by myself to get the coat, but changed my mind after measuring him.  Truthfully I'm so glad I took him.  It was so much fun to watch him look at himself in the mirror. You could tell that he was excited about wearing it.  In the end I had two coats that I couldn't decide on, so I held them up and said which one.  He picked the one I thought was the best one of the two. He has such good taste.  Next I mentioned that he'll need a belt. Off he went to the belts and pick one out before I could even look at them.  Thankfully there was one in his size.  Sure we could have picked another, but this was about his Prom Dance.

Prom 2013

I did buy a tie just in case we needed it, but instead of the tie he wore my Father's Bolo Tie that my Grandfather made years ago.  I think he had a lot of fun that day.  As for myself I was my usual self worrying. We had just changed his medication the day before, because he had been have problems at school again with getting really worked up.  One day his teacher called me and said we need his medication. When she brought him out to the car she was having a hard time getting him to the car.  The poor guy just couldn't stop swing his arms around and roaring.  He wanted to stop doing it, because he kept looking over at me. As for me I was trying to get the pill bottle open.  Don't you just hate those child proof caps!  Anyway, we got him in the car, gave him his medication and after a few minutes he started to relax.  I called his doctor, because this had been a growing problem for him this past month.  I kept holding off, because I wasn't sure if it was his medication or if he ate something he wasn't suppose to eat.  That's a hard thing to figure out at times.  In the end his doctor upped his medication and so far it looks like it was his medication that was giving him problems.  I know there are many parents out there that are against medication for their children, but in my opinion if it's needed then do it along with the diets.  The diets help to reduce the amount of medication that Kevin needs.  As for it having to be raised up, well I won't be to surprised if it stops working all together for him very soon.  Hopefully not, but I've seen it in the past.  Some of these medications will work for two years and then stop doing what they were meant to do.  After that they have to stay off of them for a year before they can be reintroduced.  I'm not in the medical field that's just been my experience in the past with my son.  Your child may very well react differently.


Saturday, May 11, 2013

In The Blink of An Eye

That is so true. In the blink of an eye Kevin can go from having a wonderful day to throwing his arms all over the place with no control of himself.  That's what happened yesterday at school. His teacher called me 30 minutes before it was time to go pick him up and said we need you.  Thankfully my boss was in at work and I was out the door in a split second. Unfortunately I hit every red light on my way.  Go figure!  It took awhile but he calmed down and Gram was able to watch him for me while I went back to work.

Not sure what the cause was for yesterdays out burst at school. It could be anything to tell you the truth. He could have eaten something off the cafeteria table during breakfast or it could be because it's the end of the school year.  Things need get out of sync for these kids the last month of school. The teachers are in other rooms helping with testing and the schedules are often a little off for them. I'll just wait to see how he is after school is out. Beside he has an appointment coming up with his doctor and we can talk about it then.

As it is the past couple of days have been wonderful for him. He has even been coming outside on his own to eat dinner on the patio with Garrett and myself. Normally, I'll ask him if he wants to go out to the patio to eat with us and he'll say no.  He shocked me one day, because he came out and sat down in the patio chair just to hang out with me.  He's even been coming into the kitchen to see what I cooking for dinner.  I'm loving every minute of it!  Even the out of sync days for him, because I know he won't stay that way for long.






Monday, April 15, 2013

Manners

Yes, I have to teach my son a nice way to ask someone if he can sit in the chair they are in.  Kevin has been doing wonderful at school, but the other day he wanted to get on the computer that someone else was on.  What did he say to her?  "Get up."  Hmmm ... when the teacher told me that I thought that is something we need to work on.  Now as for the girl she did get up, but she was not happy with Kevin.  I don't blame her at all.  So when he came over to me while I was sitting in the recliner I knew what he wanted but I told him to to say please first.  No, he didn't say "get up" to me.  He just stood there staring at me.  The trick is with Kevin instructions have to be short and to the point or you will loose him right off the bat.  Shoot I have the same problem with my youngest son.  Anyway, today I'll be thinking up phrases that might work for him.

Going gluten free for myself.  I wasn't sure if I would notice a difference, but I really do.  One night I decided to have a couple of malt beverages and the next day I could not focus for nothing.  In a way I kind of understand what Kevin's world is like when he gets casein now.  Boy, I'm very glad I went gluten free.  I had to laugh at my youngest yesterday afternoon. He had me pick up a sandwich at a fast food place on my way home from the grocery store.  While he ate his lunch I made the Sesame Teriyaki Chicken Salad I just posted on my Aunt B's Blog.  He came in the kitchen and had this look of disappointment when he saw our lunch.  I just smiled and after I made Kevin's & my lunch I told Garrett I left a little chicken for him if he wanted it. You know he did.  It was gone before I could finish my salad.

Hmmm ... manners.  "Can I sit there?"  Short and to the point.

Thursday, March 14, 2013

Yes, I Am ...

Kevin on Mother's Day 2010
Yes, I am going Gluten Free with Kevin. This is something I have thought about doing for such a long time, now.  I really fought myself on this, too.  There are so many things I will miss, but I really need to try this for not just Kevin, but for myself.  You see I've always had a problem with concentration and retaining things that I read.  But, lately it's getting worse for me.  The other day I went on my Facebook page to find a web site that I had posted on there last month. While I was scanning my home page I saw this one post and I just looked at it in amazement. I had no idea what I was trying to write there. The sentence made no sense at all.  There was no subject, so I couldn't even figure out what it was pertaining to.  I deleted it and thought wow I am really having more of a difficult time with focusing then I thought.  Granted last month was stressful for me, because it was my last month working part time out of the house. I was trying to make sure everything was in order for my boss when he took over my job.  The thing is I don't think it's just that alone that is effecting my concentration.  The day before yesterday I felt so foggy brained and I couldn't shake it.  I've had that feeling more than once, too.  I can't tell you how many times I've read about people with gluten intolerance & celiac disease feeling foggy and once they have removed the gluten it's like the fog has lifted for them. I have a friend and her brother who has celiac actually described it that way.  He had ADHD and found out by accident (a car accident in truth) while in the ER that he has celiac disease.  He said that after going gluten free it was like the fog had lifted for him and he didn't have any of the problems with the ADHD anymore.  Let me remind you that it takes months for you to heal from the damage that gluten can do to you, so if it's not working in a week remind yourself of that.  I'll be reminding myself, too.  Plus you have to stick to it. You can't do a little gluten here and a little gluten there. This is different than Kevin's addiction to gluten.  I had to wean him off of the gluten to help him to deal with the withdrawals. So, I'm going to be telling myself "stick to it girl."

In Kevin's case I think this will be great for him.  I've been wanting to get back to baking for him and if I'm eating what he is eating then I will know for sure how something actually tastes.  Yesterday I made Pizza and for the first time in a long while I made the pizza crust myself.  I want to work on the recipe a little more, but it really did taste good.  On my half I want cheese less.  Yeah, I know what is pizza without cheese!  It's good that's what it is. LOL  Truth is I'm use to cheese and Kevin is use to dairy free cheese. The taste is different and I haven't been able to adjust to it myself. Garrett, my youngest, says he really likes the dairy free cheese himself. Go figure.  Garrett will eat almost anything.  I do remember reading that if you are going to change to a dairy free cheese that you shouldn't eat any cheese for a while.  This way you don't really remember the taste of cheese. Huh, truthfully I think this works best with little children, because I think I'd remember the taste of cheese after all these years.  I don't plan on going dairy free myself or at least I hope I don't have to do it.  Anyway, back to going gluten free for myself. I was just sitting here making my grocery list and started to write down this soup that Garrett really likes and it's my favorite, too.  That's when it hit me!  I can't eat that soup anymore.  Well, I'll just have to make a gluten free version of it then.  Yes, a lot will change for me, but I think it will all be helpful to Kevin. Going to a restaurant will be interesting for me, but in the end I'll have a better picture in my mind of what I can order for Kevin if I should decide to take him there later.  Honestly, we don't do a lot of eating out with Kevin.  I'm too afraid of cross contamination issues even if I give him some GlutenEase during dinner, but there will be times when we will eat out such as vacations or to Biltmore Estates.  Oh boy, this will be interesting.

Monday, March 11, 2013

Rough Weekend

Kevin's Dragon
Yeah, we had a rough weekend with Kevin and I'm out of practice with this. It's been so long since he's been like this to tell you the truth. It started Friday when I picked him up at school. I noticed he was dragging his feet getting into the car and I was thinking it was because he was tired.  As soon as he got in the car I could tell it wasn't that at all.  I gave him his medication and dropped him and Garrett off at the house where their grandmother was waiting for us.  I had to get back to work, because I was the only there that afternoon. My boss had to go pick up her grandson after school herself.  Friday's are usually my days to be there, so she can have a half day off. So, when I dropped them off I asked Garrett to give him some tonic water to see if that would help Kevin.  I called to check on them and the tonic water along with the extra medication seemed to help him.  Saturday rolled around and it started all over again. At this point I knew the best thing to do was to keep flushing whatever he got out of his system and hope that's the answer to his problems. No extra medication on Saturday.  Sunday I was going to take Garrett out for some driving time, which he needs badly.  We went up to help my mother with putting her awing frame down on her trailer, which didn't turn out well at all, and Kevin started back up while we were there.  I ended up driving us back home, because when Kevin gets like this it's hard for Garrett to focus on driving.  We got back home and I ended giving him extra medication along with more tonic water.  Why keep giving him the tonic water you ask?  It takes time to flush out any Gluten or Casein he may have gotten in his system.  Did you know that tonic water helps with leg cramps? Back to Kevin.  If you remember when you first remove Gluten it takes several months to remove it completely and to allow the stomach to heal.  When he gets a small amount it's a setback and there's no telling how long it can take to help his stomach to heal again.  It can take a weekend, a week or even a month.  Casein isn't as bad and usually with Kevin it's out within a day or two. All of it depends on how much he gets. For Kevin (everyone is different on this) it takes about 4 hours for him to react to the gluten.  As far as I can tell Casein takes about the same amount of time, maybe a little less.  So, for today I'm keeping my fingers crossed. I sent him off to school giving him more tonic water this morning just to play it safe.

Sunday, February 17, 2013

My Cartoonist


I know I haven't written anything in some time now. We had been going through some changes with Kevin's medication and I've just been really busy lately. I'll be starting a new adventure next month myself, but I'm not going to talk about that here. I'll post that later on my Aunt B's Kitchen and Garden blog.  As I said we went through a change in his medication. Thankfully it wasn't anything major. His doctor helped me adjust the Fanapt, because he was having issues mid afternoon. So far it looks like we may have worked though it for the most part.


Today he's hanging out with me at home. We're having a very quite and relaxing afternoon.  Kevin went with me to the grocery store this morning and I picked up a sketch pad for him. He loves to draw his animals.  It's amazing to watch him, because he just pulls the pen to the paper and it doesn't leave the paper until his animal is finished. One day I should take a video of him drawing, so you can see what I mean.  I use to always carry a little note pad in my purse for him and anytime we went to a restaurant I'd pull that out for him to keep him occupied while we waited for our food. He'd fill a notepad in one night, which is what he's doing now to the sketch pad.  I don't mind at all, because he's happy as can be right now. Most importantly he isn't bored hanging out with his mom.  LOL He just finished off the sketch pad.  So, your wondering why I don't carry the notepad in my purse anymore or maybe you just assume it has to do with Kevin's age. Nope, I just don't carry a purse anymore and Kevin usually has his Nintendo DS with him.  Believe it or not that thing does seem to be helping him with keeping his hands open more often.  It's become a great tool for him as it turns out.

I don't know if you can see his finished drawing or not, but he tells me it's a Lemur.  I think he said it was Mort from the Madagascar movies.

All in all things are going good here.  We got through the holidays and Kevin's class has started practice swimming for the next event coming up for school.  I plan on going to that event, so be ready to see some pictures in a month or so of his swimming event with Special Olympics for our schools here.

Saturday, January 26, 2013

Ice Skating 2013

Kevin went to Special Olympics Ice Skating a few weeks ago and I'm finally getting around to telling you he came home with two silver medals. Yap two of them! I know I should have posted this sooner, but it just seemed like too much was going on at the time.

Thumbs Up!

I'm so proud if him.  I needed to find out from his teacher if he uses a walker or skates on his own. She said he does it on his own, but stays near the wall to help himself balance. WOW No walker. I'd need the walker myself. I've never ice skated. The interesting thing his teacher told me was that most of the kids do better ice skating than roller skating. I wonder what the difference is for them. Maybe because the blades don't move like the wheels on the skates. One of these days I'm going to go watch him Ice Skate. I really wanted to go this year, but it just so happens that was the week my car died. Next year for sure.

Friday, January 11, 2013

Goodbye Sir

Me and my boys
Sometimes you think Kevin isn't paying any attention at all and then out of the blue he says something like "Goodbye Sir."  Lately he's been having some issues late in the day. Nothing serious. Mostly not being able to focus and waving or stretching his arms around, which is not really any fun if your trying to drive.  Once or twice I've had to give him a 1/2 extra of Ativan, because he seemed to be getting a little wound up. Yesterday I even had my brother ask me if he had eaten something that he wasn't suppose to be eating. I told him not as far as I know, but he could be eating the crumbs off the table at school in the cafeteria. You'd think that even a small amount as that couldn't effect him, but sometimes I wonder. I do know of one child that ate just the corner of a cracker and had problems from just that small amount.  Anyway back to the "Goodbye Sir." The other day my brother and I picked up the boys at school and went to look at a car for me to drive. We took it out for a test drive and the longer we were there the more Kevin seemed to sink into his own little world.  You know how it is when you go to look at a car and want to talk about financing. It takes hours whether you actual buy the car or not and it did take hours for us. The later it got the more my brother and I keep looking over to see how Kevin was handling the whole thing. We finally left the dealership around 6pm and as we were walking out of the office Kevin looked up all of the sudden and said "Goodbye Sir." Needless to say we all looked at Kevin in shock.  I have no idea if it was the fact that we got up to leave the room or if he was really listening to us or not. So, remember that folks! They may seem like they aren't listening, but they just might be.

Thursday, December 27, 2012

Reflection on 2012


We're coming to the end of the year and I wanted to reflect a little here.  What a year it has been for us. It started out rough and somewhere in the middle things seemed to even out until November. Right off the bat we started out the new year with Garrett having an appendectomy and of course there were some financial issues that came with it.  Then in February we found a new doctor for Kevin and I'd say it was in the nick of time, too.  I really do like this new doctor Kevin has. We've been able to take him off of most of the medication that his old doctor had him on, but the one thing I really like is he actually takes the time to look at Kevin while we are talking. Not me, but Kevin. I mean come on who's the patient here anyway.  In March Kevin and his classmates attended their 1st Special Needs Prom.  He had so much fun that day. I'm hoping to get him a suit he can wear next year.  One year Gluten Free in May.  In June he went back for a follow up with his Psychiatrist and surprised his doctor by looking up at him and saying "Hello Doctor."  The big plus during this month was we took him off of Prozac!  Now July was a big month for us, because we went on our first vacation in seven years. Yes, it had been seven years since I'd taken my boys on a trip.  We had the best time visiting my sister in Florida and hanging out at the beach.  Kevin really loved the water so much that I'd be afraid to live on the beach.  Now at the end of July I bit the bullet so to speak.  I put Kevin on the Casein Free diet.  At first I wasn't sure if it would make a difference, but oh yes it has.  He seems a lot more focused since starting this diet.  The Gluten Free diet is a huge help with his agitation, but he still wasn't really focused with the world around him.  Trust me he isn't cured, but just having him a little more focus is a blessing.

That was the first half of the year.  After July things kind of settled down. The boys went back to school in August and Garrett got his driving permit.  September seemed to be uneventful. Thank goodness if you ask me. In October it seemed like I was hearing more words out of Kevin and I'd decided to keep him on the casein free diet.  The best part was I had noticed he was able to focus on playing games on his brother's Nintendo DS.  This helped him to start using his fingers again. The poor guy had his fingers so curled up in such a tight fist for so long that he basically forgot how to open them. There were days when I'd remind him to open his hands and let the air to them.  Things were looking up. Kevin had gone for his first time to visit his father and step-mother all by himself. Yap, no Garrett just Kevin getting his Dad's fullest attention. Looking back on this I'm so glad he was able to visit his Dad by himself, because November rolled around and his Dad passed away unexpectedly.  I'm still not sure what happened, but I was told it may have been a blood clot.  We took a relaxing moment at my sisters house here to enjoy Thanksgiving.  I knew we had a lot to be thankful for, but it was hard to stay focused on it.  The 1st of December their Grandmother in Florida passed away from lung cancer.  We started out the month pretty depressed, but Garrett and I were determined to have a Happy Holiday no matter what.  We went out as a family and picked out the Christmas Tree.  After I put on the lights the tree the boys decorated it together.  I think it's one our best looking trees ever.  We spent Christmas day at home with their Grandmother that lives here and stuffed ourselves.  Gram and I decided since there was only the four of us we were having Prime Rib.  Yap, Prime Rib. Something that neither ones of us has ever cooked before.  Well, thankfully Gram had talked to my brother in Florida and he told her it was easy.  It was!  Wish we could afford to do that more often.  Now I have to confess the cake I made for Christmas was a big flop. It was like cutting rubber and I was so upset that I had no dessert for the kids.  No idea what happened, but I decided to make cupcakes right then and there. One problem I soon realized was I had no icing. I sat there thinking about it for awhile and thought well heck what did they do years ago.  They made it from scratch.  I got my Grandmother's 70 year old cookbook out and found a Marshmallow icing recipe.  This is the funniest part.  My mother was helping me and while she was scoping the marshmallow into the egg white that I was beating somehow the spatula got caught up in the hand held mixer.  It flipped right out of my hand and landed on the floor beating away.   We're both standing there looking at this thing spinning away on the floor like idiots. Icing was everywhere.  My mother says turn the thing off. I said I can't because my hands were covered in icing.  She reached over and yanked the cord out of the socket.  What a mess.  Marshmallow icing is the stickiest icing in the world if you ask me.  Well, there is some good here.  Are you done laughing yet. There was just enough icing left in the bowl to icing the cupcakes, so we had dessert after all. 

We have a new year coming around the corner and here's to hoping and praying that next year is the best ever for yours and mine.



Friday, December 14, 2012

Tree Time

We have our Christmas up, but that's all we've gotten done as far as decorating goes. Hopefully this weekend we can get the lights up outside and finish the inside of the house. We all went last weekend and picked out our Christmas tree. I think Kevin picked out about 6 trees in all. He was too excited about finally getting that Christmas tree up. Yeah, he knows that Santa puts the presents under the tree. I put the lights on and the boys did the rest. For the first time I am using Kevin's brothers name here, because of Garrett's age I feel safe using his name now.

Oh, here's something really cool about Garrett. He's getting his wings today in JROTC.  He flew solo in the flight simulator the other day with success.  I am so proud of both of my boys.  I know I've said it before, but I'm one lucky Mom!


Kevin


Kevin and Garrett


They work so well together

Kevin's brother Garrett

Thursday, December 6, 2012

Happy December Everyone

Day after Christmas 2 years ago
It's the holiday season and Kevin couldn't be happier.  We got his Christmas movies out and he's already watched them several times. LOL I think from Halloween to New Years is his favorite time of year.  Yesterday his brother asked him what he wanted for Christmas; Kevin's answer was so simple. "Presents"  Next his brother said yes, but what do you want in those presents.  Kevin said Wolves, Batman and Godzilla.  Hmmm. He has every Godzilla movie ever made as far as I know and I'm not sure they are making Godzilla toys anymore.  Might need to check Amazon for that one.  Wolves are easy.  Not the real thing. He likes those plastic animals.  You'd be amazed how many of those I've donated to Goodwill.  I always keep his favorites though.

Hopefully this weekend we can get a Christmas tree. I was going to hold off, but the longer I wait the more those trees will sit around only to dry out more.  That just reminded me.  A few years ago I had one of those per-lite Christmas trees. I got it all together only to find that the middle section wouldn't light anymore.  I tried to find the problem, but there was no hope. I stood there with my hands on my hips saying "now what" to myself.  I didn't realize I'd said it out load until Kevin said here you go and handed me a string of lights that were in a box.  Problem solved!  I added those lights and we were set to decorate.  Sometimes we get so wrapped up in problems and it's hard to see the simplest answer.  That's why I have Kevin.  He will make you look at life completely different that's for sure.

Friday, November 30, 2012

The Passing of a Father

Keith and his two boys


November is coming to a close and I couldn't let it close without honoring my former husband.  The boys father, Keith, passed away on November the 11th unexpectedly. Instead of dwelling on his death I have chosen to embrace his life.

While we were married we often went out to dinner and neither one of us wanted to just decide for Kevin what he would eat. We wanted him to make the choice, but the problem was Kevin wouldn't use his voice. It was Keith that came up with the idea of having Kevin slap a hand when we needed him to make a choice for dinner.  That eventually got us to the point that he would slap the hand and whisper his choice.  It was also Keith that had the idea to help Kevin with his fear of people dressed in costumes such as Micky Mouse.  We discovered this fear when we took the boys to Disney in Florida one year.  That was most likely our worst vacation ever.  We could only conclude that for Kevin it was just the thought of his stuffed animals coming to life. Well, one weekend after our divorce Keith had the boys for a visit and they had gone to a car show. Now, I have to tell you this didn't turn out like Keith had hoped, but his heart was in the right place. There was someone there dress in a Big Daddy Rat costume, so Kevin's father took him over to talk to the 6 foot rat.  He wanted him to understand that there was a person in the costume, but unfortunately it didn't work.  Over time we've been able to help Kevin with this fear, but most of the time we avoid any place that has someone dressed like this.  Don't get me wrong here. Kevin loves Halloween and understands that those are people in those costumes.  Keith loved his boys and enjoyed having them visit him as often as he could.

I had the hardest time trying to decide if I should tell Kevin about his father's death or not, but in the end I did tell him.  Kevin knows words like dead, but I don't know if he understands the meaning of the word.  Sometimes he's watching a movie and when someone dies in it I hear him say he's dead. In the end I told him because #1 it wouldn't have been fair to Kevin and #2 there were so many people around him talking about it. Kevin hears everything that is said in front of him and I didn't want him to find out about his father that way. So, in the end I told him his father got sick and died. Maybe I shouldn't have used the word sick, but it's too late to take that back. I also explained that my brother, his brother and myself would be there for him. His answer was very simple. "Okay." I had talked to one of my bosses about this and he told me that maybe that's all Kevin needed to know.  I think he's right. Thanks Tom for lending an ear.

Yes, our marriage was over, but our friendship stayed. You might think it may surprise my sisters and brothers to know that Keith often asked about everyone and wanted to know what they were up to, but in truth they all knew him so well that it wouldn't have surprise any of them. Keith will be missed greatly by not just myself and our two boys, but also by his wife whom he adored, his four step children, his mother in Florida, a sister in Florida, plus a sister and brother both in Ohio.

Keith with his wife Karen, our boys and two of his step children

Friday, November 23, 2012

The Thanksgiving Feast

The Holidays have begun to stay the least.  Yesterday we went to my sister's house for Thanksgiving.  What a pleasant day it was. The weather was beautiful. The little ones were able to go out and play in the pile of leaves.  Kevin had a great time playing with his younger cousin.  I looked over once and they were playing hide and seek in the living room. Another time they were both watching TV together and later I found them both in the living room playing with their gaming devices.  It was a huge difference from last year when Kevin's medication stop working for him on that very day.  But I'm not going backwards in time here.  We had our feast and sat around stuffed all afternoon until it was time to eat all over again that evening.  The night before I was in a panic, because my dinner rolls did not come out at all.  I made them several weeks ago without any problems, but for some reason both batches just shrunk right up on me.  Thankfully the ladies with my GFCF Recipe group came to the rescue. I emailed the group asking for help and one of the girls posted what she usually makes.  I am so thankful to her.  We had dinner rolls after all! I know most of you are thinking so what if he doesn't have dinner rolls. Well, I cared about whether or not he had them like the rest of us at the table. I try to make sure he has something equivalent to what everyone else is having. He does notice what everyone else is eating believe it or not. Thankfully it was a none issue anyway. All in all it turned out to be one of the most relaxing Thanksgivings ever.





Sunday, November 11, 2012

Big Brother, Little Brother


My how they have been changing on me.  Yesterday Kevin was voicing his opinion whether it was good or not.  I heard him say stupid dog once and thought I heard him say stupid Mommy.  I asked him if he said stupid Mommy and he said said yes.  I explained that that wasn't a very nice thing to say and he said Sorry Mommy.  Later after dinner he was bringing me his dinner plate into the kitchen and when he turned to leave his brother was standing in the way.  Kevin said his brother's name and move out of the way.  Now that would have caused a fight a few years ago with little ole me breaking the fight up. I'm only 5'5" and they're both either 6' or almost.  Neither one of these young men likes to be bossed by the other. Instead his brother calmly explained that wasn't how you asked someone to move and told him how to say it the right way.  I told Kevin to say he was sorry to his brother.  He did with a big hug.  His brother was trying hard not to start laughing, because he was still explaining how the ask someone to move. I was very proud of both of them for the way they handled the whole situation.  Oh yes Kevin is using more and more words lately.  That morning he and I went to visit with my sister and her husband at their antique booth.  His brother was off doing something for the Vet's uptown with JROTC.  My brother-in-law introduced us to a friend of his.  Kevin reached right out and shook the man"s hand saying "Nice to meet you" very clearly.  Just before leaving he was running around calling his Uncle's name, because he wanted to say bye to him.  They have a very special way of stay bye to each other and have been doing it for years.
Kevin getting a kick out of his brother driving




Monday, November 5, 2012

Ice Skating Practice

Today is the start of the Special Olympics Ice Skating Practice for our schools and Kevin was so happy about it this morning.  I'm hoping I can go check it out one day during practice or even the event itself.  I have never ice skated in my life.  When I was about 3 years old I remember my two older sisters wearing these dual skates that strapped on to their winter boots.  I thought that was the cools thing in the world until the one boy in our complex showed up on single blades.   I have no idea if Kevin uses a walker, dual blades or what.  It really doesn't matter, but it'd fun to watch him ice skate.  He seems to light up when you mention skating of any kind to him.


So how's he doing with his diet you ask. Wonderful! The other day I asked him to bring me his plate into the kitchen.  He hopped right up and said "Here you go Mommy."  Happy dance!!  Another new sentence!  It seems like the longer he stays on the diet the better he gets.  We had a few weeks that weren't so good a while back and after talking to his doctor we decided to try a little high dosage of his medication with the Fanapt.  Well, after a week and half into the new dosage I knew it was too much for him.  His doctor was out at the time on maternity leave.  His wife had a baby boy, so I discussed it with the nurse.  Back down we went and I added a 1/2 Ativan in the afternoon for about 2 weeks instead.  I have him back off of that and back to his original dosage.  He seems to be back to how he was at the start of school.  No idea why he was having issues a while back and I'm just happy he's back to he's original dosage.



 


Thursday, November 1, 2012

Happy All Saints Day

Halloween has come and gone sad to say.  Kevin loves this time of year.  Yesterday was a big day at school for him. They had a Fall Party during class.  I was lucky and found candy bars for him at the Health Food Store and sent them in to his teacher for Kevin's treat. I also made cupcakes using Betty Crocker's Gluten Free Cake Mix for him.  I knew one parent was sending in cupcakes, so I wanted to make sure Kevin didn't feel left out.  The best part of the day was watching his brother make our Jack-o-lantern.  Kevin was right in there watching every detail.

All of you will have to check out my new blog Aunt B's Kitchen & Garden at http://auntbskitchenandgarden.blogspot.com/.  I should be posting my new recipe for Blueberry Cinnamon Muffins soon.  Kevin can't wait for Turkey Day. In his own words Gobble Gobble!

Thursday, October 18, 2012

Special Olympics Skating 2012

Even with a bite of a rough start this morning Kevin pulled off a gold medal for the 30 meter straight line skating event.  He's not the fastest skater, but he loves it!  As for this morning we'd had been working with his medication dosages, and if you remember I mentioned he was having issues a few weeks ago.  Well the new dosage after a week and half of trying turned out to be not such a great idea. His teacher called me and said he was roaring and throwing his arms in the air. Fortunately I was on the road that the school is on and pulled right into the parking lot.  Sure enough I could hear him as I headed for the office to sign in.  As soon as I sat down next to him he seemed to snap out of it, but to be safe I gave him half an Ativan.  We waited a few minutes to make sure he was fine and off he went to skating with the rest of the class.  After school he was his old self. Even pulled out the paper that he wrote at the end of day saying what he did in school today and started reading it to me. Going back to the old dosage and we'll just see how he does.

Monday, October 8, 2012

He asked for Help

I know it's been awhile since my last post, but truthfully not a lot has been going on.  Kevin has been doing wonderful in school.  His teachers have been telling me he's starting to participate in class again.  In the afternoon he seems to be going down hill a little and it may mean adjusting his medication in the afternoon.  I'll wait and see what the doctor thinks before I say more about that.  Last night was a first for Kevin. In his own way he asked for help with opening a bottle of water.  He was watching me get his medication out last night and I told him he'll need a drink. He got a bottle of water out of the refrigerator and said "Need help, here."  I'm never sure if I should jump up and down cheering when he does these things.  LOL I don't want to make him self conscious after all.  I'm sure that's one of the many reasons why he whispers at times.  But, last night was no whisper.  I said ok, opened the bottle for him and he said "Thank You."  I do try to teach my children manners after all.  So, small steps can lead to big progress if you give it time. Am I sticking with the casein free diet along with the gluten free diet? YES!  Maybe a few years down the road I might try a little cheese, but not anytime soon. Not with the positive feed back I get from his teachers.    

Tuesday, August 28, 2012

Back in School!

Yesterday was the 1st day of school and boy what a day it was.  Kevin had a wonderful day and was rather surprised to see his brother there, too.  So far I'm having Kevin ride the bus in the mornings just to give him some independence and then picking him up when I have to pick up his brother.  His younger brother doesn't have a bus, because it's not our home school.  I wanted to have both boys at the same school now that they are both in high school.  Kind of makes sense, but it also makes for a lot of running back and forth.  On most Fridays when I'm at the showroom Kevin's respite worker will drop them off at home to their Grandmother.  Otherwise I'll just have to take off from work to drop them at home to my mother and go back to work.  Traffic at the high school will be too much for my mother to deal with for picking up the boys, so this should work out okay.

This summer Kevin got another surprise. His brother can drive!  Every time his brother gets in the drivers seat Kevin just cracks up laughing.  It doesn't seem to be a nervous laugh, so I think Kevin thinks it's pretty cool having him drive us anywhere.

The last surprise was his respite worker is no longer his teacher. We were very sad about the changes, but the good thing is Kevin already knew is teacher.  She's been one of the teachers at school since he started there and she's also his respite works closest friends.  She knows Kevin and understands he is Gluten and Dairy Free.  She's been very helpful with where I can park (out away from the usual group of parents) to pick up the boys.  Yesterday was funny, because Kevin saw me pull in and he kept saying Mommy, Mommy.  His respite worker was standing out there with them and said to his teacher "You know she's out there don't you?"  His teacher asked which car and walked him over to me.


So, we are looking forward to a new and wonderful year in High School. Oh, don't make me cry thinking about them growing up so fast.  We had a great summer with no real issues other than the medication changes and reduction of medications.  That's a big plus. I don't think we would have been able to pull that one off without being Gluten Free.  As for the Dairy, I want to keep him off it for 6months to 1 year before I reintroduce it to see if it really does make a difference for him.