Week 149

Week 149

Over the past few weeks, we have commented about how Ryan has been losing his patience.  A perfect example of this is when he was on Raz-Kids this afternoon.  This is an online reading program that his elementary school uses to promote reading.  The program lets you select a book, listen to it, read it aloud, (but if you get stuck on a word, you can sometimes click on it and have it read that word back to you) and then take a quiz.  The better you do on the quiz, the more stars you get.  You can then trade in those stars to build a space ship.  Ryan usually loves this program but today was not the case.  He got so frustrated not knowing the word that he stormed out of the room, screaming that he quits Raz-kids and started slamming different objects with his fists in the living room.  We had to send him to his room to calm down.

Last week, we spoke to his counselor at school and she is noticing an increase level of frustration on Ryan's part, and said that she noticed his anxiety level is much higher this year than last.  She gave us a recommendation of a therapist that works with children to see Ryan outside of school.  We called on Friday and hopefully they will call us back early next week.

We have also noticed that Ryan seems to be bouncing from one thing to the next more frequently.  He will come to me to download a game on the IPhone or IPad then 5 minutes later come back to download a different game.  But on the flip side, he sat this weekend with Dawn's mom and made 24 craft crosses that say God/Love, and also watched Willy Wonka and the Chocolate Factory 7 times. He was obsessed with it.  The moments of repetitiveness verse moments of ADD is all so confusing to us and hopefully we can get Ryan to see someone soon.

However, it was not all bad news this week.  A few times this week, Ryan came home from school only to play school with Julia.  He made up several math problems for Julia to do "in class".  He was very good at teaching and congratulating Julia when she got the answers correct.

Happy 7 months Jack!

I want video games. Mom won't let me play video games. I love video games. I hope to get them for my birthday.

Math problems for Julia by "Teacher Ryan".

More math problems for Julia by "Teacher Ryan".

It was a week of ups and downs and hopefully we can figure out what is causing Ryan to have such high anxiety outbursts.  We will keep you updated.

PC

Week 148

More daily meltdowns for Ryan, coupled with a bout of head lice for Julia and a fever and stomach virus for Jack, made for another busy and stressful week in our house.  But it wasn't all bad so I want to focus on some of the good this week.  First I have to say that Ryan's and Julia's report cards were excellent.  Ryan improved academically in many areas and Julia is above grade level in many areas.  We're so proud of them!

Celebrating my birthday

A play date with cousins:

I made Ryan grain-free peanut butter chocolate chip cookies, and he loved them.  One of my friends shared the recipe site with me.  You would never believe that the cookie is made mostly of chick peas, but they do taste best when warm and the chocolate is gooey.  Here's the website for the recipe:

Grain-free peanut butter chocolate chip cookies

DC

Week 147

I said it two weeks ago, when it rains it pours.  Well it is still wet here! (Hence the inconsistency of posting to the blog lately.)

On February 1st, the dreaded day arrived for me to return to work.  Don't get me wrong, I love teaching, but it was very difficult to leave my children and leave the routine I had established at home the past seven months.  Returning mid school year was more difficult than I thought it would be for many reasons, but topping the list is the stress of returning to a brand new curriculum with no time during the work day to get any planning done.  I work through my lunch almost everyday, work for hours in the late evening hours and over the weekends, and I'm barely staying afloat.  I promised myself I would let go a little and focus on my priorities, but it is a difficult thing to do.  The expectations I set for myself are way too high and I need to accept help.  I find myself putting in hours like I used to do before marriage and kids, and hours that match my hardworking colleagues whose children are grown.  Where do I get off thinking that I am capable of doing that with three young children, a husband in the middle of his doctorate program, and an aching back???

On top of the stress of returning to work we have had some setbacks with Ryan.  His meltdowns are becoming more frequent and occur numerous times a day.  He often throws himself on the floor for several minutes banging his arms and legs until he decides to get up and yell at someone or throw something or hit something.  His bad language, behavior in school with other children, poor test grades, and aggressive behavior have us very concerned.  I don't want to share the specifics on here, mainly because it is too upsetting and embarrassing, but I can say we are seeing a new side of Ryan and it scares us.

We are trying to get his school counselor to meet with him individually about some of the setbacks he has been having with managing disappoints, making transitions, and resistance to complete homework.  Individual counseling is not on his IEP and the social worker is only in the building every other day.  I can't imagine her having the time to meet with Ryan, or at least not on a consistent basis.  We are looking into hiring a psychologist outside of school.  There have also been consequences at home.  Just this evening, after two days of bickering over sharing video games, we packed up the Nintendo DS handheld systems the kids received for Christmas and left it out for Santa to pick up.  They handled it better than I thought; we'll see what happens in the morning when they realize the box is indeed gone, and our Elf on the Shelf is here to check in on things for Santa.  We've also created an afternoon checklist, similar to the one we have the kids do in the morning.  This will be implemented beginning tomorrow.  I think Ryan needs that structure; he needs a list of pictures of things he has to do and check off before he can play games after school.

I'm sure some of you who know Ryan are finding all of this difficult to believe.  Well during one of his meltdowns today, and he had about 6 or 7 between the time he returned home from school until bedtime, I grabbed my camera and caught the last minute of it.

Ryan having a difficult afternoon

I replayed this video for him to watch and he found it very funny.  For me, it is difficult to watch, as I feel I am losing a part of my good little boy each day, and sadly I would consider the behavior captured on camera "mild" compared to many of the meltdowns Ryan experiences.

I do have two positive things to share this week.  My mom had gall bladder surgery the day before I returned to work and she is doing well.  And as for Jack, he is finally starting to get that twinkle back in his eyes.  After months of illness he is showing signs of being genuinely happy.  He needs to remain on the nebulizer for the remainder of the winter, but it seems like we may have finally found a mix of meds/treatments that are helping him recover.  Fingers crossed!

DC

Week 145

This was a very difficult week for us.  On Tuesday, when Dawn posted last week's blog she wrote about how Jack was not feeling well.  Well as the week went on, Jack did not improve.  Even after several nebulizer treatments, Jack's breathing did not get any better, in fact it seem to get worse.  It got so bad that on Thursday evening Jack woke up several times in distress and he did not respond to three different nebulizer treatments.  After calling the pediatrician to let her hear how Jack was breathing and coughing, we took her advice and ended up taking him to the Emergency Room.  He was such a little trooper.  They tested for the flu, RSV, and Pertussis.  They took X rays, drew blood, and finally admitted him to the hospital around 4 AM on Friday morning.

Our sweet little Jack resting after a stressful evening in the ER.
Waiting to be transported to the pediatrics unit.

The final diagnosis was a double ear infection and Croup.  It took the pediatrician in the ER to dig out all the ear wax in Jack's ears to finally get a good look.  Once she did that she saw the problem right away.  We cannot tell you how many doctors and nurses during the week and that day looked in his ears and never bothered to get the ear wax out of the way to get a good look.  Once they gave him the medicine for the ear infection, a different medicine through a nebulizer treatment, and a steroid to help clear up the cough, his breathing improved.  He spent Friday night as well in the hospital to make sure everything was normal and was discharged on Saturday morning.  He is still not 100%.  His breathing is on the fast side, but his spirits are good.  He had a good night's sleep on Saturday, and Sunday was a good day.  Hopefully, this is the end of a long two weeks of Jack being ill and crazy week that we have had with everyone being sick!

At the hospital; starting to feel better!

What a difference 48 hours on the proper medications can make!

On the Ryan front, he had an okay week.  With all of the transitions since Thursday, he was a little off.  He was able to play video games with his cousin on Friday evening and really wanted to go over and play again on Saturday.  But we said no and he had a melt down to the point that he put his shoes on, coat on, and was going to "drive himself" to Uncle T's to play.  We were able to get him out of it by telling him that we were going to a birthday party across the street.  He was all set at the party until they decided to break out Wii bowling and then Ryan lost interest in playing with the other kids, and just focused on trying to get into the game.  We were only going to stay an hour and we had a tough time leaving.

On a positive note, Ryan received a 100% on his last religion test.  Given the fact that he gave Dawn and I such a difficult time studying for this test, it was great to see.  His teachers were really happy with his test and with how he handles himself in the class.  They told me that on test days Ryan sits by himself and keeps his eyes on his own paper.

Ryan really tries hard to please all of his teachers.  For example, they encouraged the kids to read more non-fiction books.  When we showed Ryan the book magazine and told him he can pick something out, he passed by the cool looking Ninjago books and picked a set of non-fiction books about Presidents Washington and Lincoln.  And on the announcements at school they talk to the kids about events such as no name calling week and the upcoming Penny Wars.  Ryan comes home and makes sure he does what he needs to in order to be involved.  If they ask the kids to wear blue to school, he reminds us that evening when we are taking out his clothes for the next day.  His new kick is this "Penny Wars" fundraiser they are doing.  He talks about it constantly and we give him coins for good behavior and he adds it to his baggy to bring to school to donate.  He even tried to take money out of his own wallet but I wouldn't allow it.  He really does get obsessed with these things, especially if it is a contest at school and his class has a chance to win something.  He will bring in coins to donate, like most of the other kids, but I would find it hard to believe that many of the other kids did chores to earn those coins.    While I'm glad he likes to get involved, I know that most of the time his efforts go unnoticed.  What comes easy to most kids takes a whole lot of effort from Ryan.

Hopefully with everyone feeling better, we can get back to our routine.  It will be an emotionally trying few days for all of us as Dawn's time at home on maternity leave comes to a close and she heads back to work at the end of the week.

PC and DC 

Week 144

I am a couple of days late writing about this week's happenings because when it rains, it POURS!  Where do I start???

Ryan...
Ryan had a dentist appointment to get 2 of his 4 cavities filled.  They gave him gas to calm him down and then a shot of Novocain.  The left side of his mouth was numb for several hours and he did not like the way it felt.  He kept chewing on his bottom lip.  Here's what he woke up to the next morning:

I don't have the heart to tell him that he has to go back in February to get two done on the other side of his mouth!

Julia...
Julia performed at her first big Irish Dancing feis over the weekend.  About 15 minutes before her group was to perform she complained of stomach and head pains, and she was burning up.  She put on a smile for her performance but immediately afterwards asked if we could go home.  She didn't even want to wait to hear the results.  We got home and I took her temperature- 101.8.  I found out the next day that she placed 3rd out of 15 contestants for her Reel step and 4th out of 10 contestants for her Jig.  Not bad for not feeling well!

Trying to be happy but feeling really miserable.  Thank you to Amanda, Karl, Elaine, and Aunt Nancy for coming to see her perform.

Jack...
Jack suffered from the Croup most of the week.  The doctor prescribed a steroid which didn't help much and I brought him back for another checkup last night.  He is wheezing so they gave us a nebulizer machine to bring home to administer Albuterol every four hours.  He goes back for a breathing checkup in a couple of days to see if the nebulizer and medicine is helping to open up his airways.

Despite the craziness and sicknesses going around, there were some fun moments for the kids.  Ryan attended a birthday party and the little girl's mom generously bought Ryan a package of GFCF cupcakes from Nature's Pantry.  They were made by a company called Food For All and were DELICIOUS!  They are based out of The Hudson Valley and sell their products in stores in the area.  If you live in the Poughkeepsie area, check out their website:  foodforall.biz

The kids also had some fun time with mommy and playing dress up with their cousins.

Little Jack Jack turned 6 months old.  Through his coughing we were able to get some photos of him by himself and with Ryan and Julia.  I just love the photo of the three of them!

DC

Week 143

Two years ago today we lost Baby Campbell #3.  A lot has happened since then and as difficult of an experience as it was, without it Jack wouldn't be in our lives.  We were too busy today to dwell and be sad, and it is embarrassing to say that I only paused for a moment to look at the ultrasound and remember.

This week Ryan began to take cod liver oil again, as encouraged by our visit to Dr. Cowan.  We are pleased with the ease Phil was able to administer this to Ryan.  Ryan remembered taking it a year ago, and as unpleasant as it is to drink, he is taking it well and the process is over within a minute.  I think back to when we first needed to give this to Ryan and how long it took, and how many shirts he ruined because the oil dribbling out of his mouth stained them.

We attended a birthday party over the weekend and I want to share a sweet story regarding Ryan, a two year old girl, and the pinata.  Numerous times Ryan has been the one at the party that struggles gathering candy and prizes from the pinata.  There are usually bigger and faster kids who push their way to the center and hog the candy.  Ryan often ends up feeling defeated, walking away with a couple of things, crying.  This party was different.  A majority of the kids were very young so Ryan had no trouble gathering loot.  But there were a lot of kids and just behind Ryan was a two year old girl crying because she felt defeated.  Ryan turned to her and took all of the candy that he had gathered in his fist and handed it to her.  She looked at him and continued to cry, not taking the candy from his hands.  So he placed it down in front of her feet so that she could pick it up herself.  I couldn't have been more proud of him!

Ryan with his balloon sword.

Julia after her visit to the face painting station!

 There are times when Ryan refuses to do homework.  It takes a lot to get him to sit down and do more writing, after a long day at school.  This week he surprised us by doing an hour worth of homework.  He read the book, "Are You My Mother?".  After reading a few pages I looked at how many pages there were and asked him if he wanted me to finish it for him.  But he said no.  He wanted to read the whole thing.  It took him 30 minutes but he did it.  I was worried about it taking that long because he then had to write a book report but he did that as well.  He seems to enjoy reading when he knows the words, or when there are only a couple of words he needs help with.  We were so proud of him.

Happy Jack enjoying a day at home with mommy.

I tried out a new pancake mix and was pleased with how fluffy they turned out. However, like the others, after being refrigerated they tend to get crumbly.  But Ryan doesn't seem to mind, as long as they have his mini chocolate chips in them!

I mixed Ryan's chocolate flavored almond milk in to some of the batter to make chocolate chocolate chip pancakes and they were yummy.  I enjoyed them, as well as Julia, who can immediately taste the difference when I try to sneak something GF into her diet.

I read a book this week called Love Anthony by Lisa Genova.  I've had it since September and finally took the time to read it, and am so glad I did.  A big thank you to my friend Bridget who works in the book selling business.  She knows me well enough to know I would like it, and generously surprised me with it when she came for a visit to meet Jack.  I think part of me had put off reading it because I knew it would be sad, and it was.  Not sad because the boy dies, but sad because of the reality of how many children are on the Autism Spectrum, and are misunderstood.  But it was more inspiring than sad.  It reminded me of how far Ryan has come over the past couple of years, blessed that he is verbal, and thankful that he is who he is.  Also, it makes me want to visit Nantucket one day!

Here is the summary written on the back cover:

Olivia Donatelli's dream of a "normal" life shattered where her son, Anthony, was diagnosed with autism at age three.  Understanding the world from his perspective felt bewildering, nearly impossible.  He didn't speak.  He hated to be touched.  He almost never made eye contact.  And just as Olivia was starting to realize that happiness and autism could coexist, Anthony died.  Now she's alone in a cottage on Nantucket, separated from her husband, desperate to understand the meaning of her sons' short life, when a chance encounter with another woman facing irreparable loss brings Anthony alive again for Olivia in a most unexpected way.  In a piercing story about motherhood, autism, and love, Lisa Genova offers us two unforgettable women on the verge of change who discover the small but exuberant voice that helps them both find the answers they need.

This story is so much more than simply autism, and even marriage, and I recommend it to everyone.  You don't need to have a child with autism or be married to connect with this book.  It is about communication, and we all communicate in some way.  I don't want to say much more since I feel the back cover already gives so many "spoilers".  Who wants to borrow it first???

DC

Week 142- Our 200th Post!

A couple of weeks ago we had quite the interesting conversation at dinner.  Halfway through I picked up my camera and caught some of the silliness on video.  Here it is...

Young Love


Then this week Ryan came home with a picture given to him by a girl in his class.

Ryan told me, "She drew me wearing clothes like I have to marry her!"  That led to another video filled with silliness...

 Young Love Part 2


After looking back at the Part 2 video I noticed how jittery and silly Ryan gets when he is nervous. He is running around in circles and spinning.  I haven't seen him do this in a while.

 This weekend Julia participated in her first feis for her Irish Step Dancing.  She placed 2nd for both the beginner reel and beginner jig.  For most competitions we are not allowed to take video or pictures at but we were for this one so here they are...

Julia Reel

Julia Jig

Two 2nd place trophies

 DC

Week 141

Christmas!  It finally arrived and Ryan could not have been happier.  He was so excited for the day that we had to tell him to not come out of his room until 6:00 AM and he had to come get us first.  Santa does not wrap his big gift and we wanted to catch the look of surprise on their faces when they came down the stairs. The big gift this year was a Nintendo DS.  They have been asking for a DS since the summer and Santa brought them one.  They were both thrilled.

However, with the holidays came lots of non-gluten free food.  It is tough to keep Ryan on a schedule and his diet with the long break.  He cheated a lot on his diet and we paid for it.  His behavior was extremely wild.  As a result of his wildness, his play became very rough.  He almost sent Dawn to the emergency room when he crashed into her knee.  He did not mean to hurt Dawn he was just so wild and rough he hyper- extended her knee.  Dawn ended up spending the majority of the morning on the couch icing her knee.  We also had to be on alert every time Ryan was near Jack.  Ryan just wanted to play with him but his play was so rough we had to be watchful and constantly remind Ryan to calm down.

We took the kids to the dentist this week and Ryan has four cavities.  We were shocked.  Ryan is so diligent at brushing his teeth and his diet is normally very good.  What we came to realize is that a great deal of the GF/CF food is high in sugar.  This is added to make the foods taste better and is something that we were not careful of watching with him.  So now we are being mindful of the sugar intake and also flossing is now recommended to help make sure he does not have any further cavities.

We also had an appointment with Dr. Cowan.  Ryan has not been to him in over a year and the doctor was surprised to see how far Ryan has come in that time.  He made good eye contact with the doctor when he shook his hand to say hello.  When the doctor called him over to the table we were at and it required Ryan to walk away from the train table, he did it without complaint.  Ryan even read for Dr. Cowan.  When the doctor stopped him half way through Ryan asked if he could finish reading the book to us.  Ryan sat down at the table with us and read the rest of the story.  Dr. Cowan was very impressed and was happy with his progress.

One area that Dr. Cowan wants us to focus on is labeling Ryan's emotions when he is having that emotion.  For example, when he is bored, he wants us to tell Ryan that this is what bored feels like and move on.  He feels that we need to help Ryan recognize his own emotions before he will be able to recognize those emotions in others. The other area is to start Ryan on a Phonics reading program.  Ryan is too literal in his letters and does not know the sounds that the letters make, especially when they are put together.  For example, sh.  Ryan reads the s sound and then the h sound.  He does not see them as one sound together.  He is doing much better with his reading but he is a little behind and we are afraid that the gap is only going to get bigger as the years progress.   Overall, it was a very good appointment.

We sometimes forget how far Ryan has come and it is nice to see others recognize that progress.  Through all the struggles that we have had with Ryan over the past three years, we sometimes forget to stop and take a look at how far he has come. One of the biggest reasons for Ryan's success is Dawn.  She has put so much time and effort into helping him that I do not know how she has the energy to keep going.  I know of many people that would have accepted the first neurologist's suggestion and brought their 3 year old to a pediatric psychiatrist to have them put them on medication.  I hope someday Ryan will realize just how much his mom has done for him and how much Dawn loves him.    

Pajama Day

Baking cookies for Santa

Christmas Eve with cousins

Christmas Eve with Nonna and Papa

Up at the crack of Dawn on Christmas morning.  So excited to play with his new DS from Santa!

A visit from Santa on Christmas Day.  He brought gifts for all of the kids, and Jack got his two bottom teeth!

Nonna replaced the ornament that Ryan broke a few weeks back.  He was so happy.

A basketball hoop from Uncle T!

Lots of outdoor play in the snow this week!

Wishing all of you a Happy and Healthy New Year.

PC

Week 140- Trying to Process the Sandy Hook Tragedy

My heart continues to ache for the lives lost in Newtown, CT.  To send your children off to school and not have them return home is beyond my comprehension.  I can't imagine what those parents are going through, and what those kids must have felt.  Being a teacher, having a 6 year old child, and having a child with Autism has this tragedy hitting me on all sorts of levels.  Regarding the Autism, some jumped to conclusions about the shooter and blamed an Autism Spectrum Disorder as the cause for his actions.  This is terrible.  It will send all sorts of wrong messages to others out there that being on the spectrum is related to violent behaviors and careless tendencies.  This isn't the case with my Ryan.  He gets very upset when someone is hurt either physically or emotionally.  And as far as his desire to play "rough", he sometimes does, but no more so than what I see from other kids his age.  And as a teacher I have seen violent tendencies with some children on the spectrum, but also with typical adolescents as well. 

So whom, or what, do we blame for this tragedy?  We have to blame something, correct?  Because if we can blame it on something we then have answers to why this happened, and then we can have closure.  Placing blame absolves any feelings of guilt we may have that we could have prevented this.  It makes us feel better because we can work on fixing what the problem is so that it doesn't happen again.  Placing blame allows us to move forward.  Right?  Wrong!  Especially when society can't agree.  We're quick to blame the shooter's parents.  Political folks, the same ones who spent months before the Presidential election arguing back and forth with their friends on Facebook, are having a field day arguing over gun control issues. There are some who blame ASD (and I don't believe it has been confirmed that the shooter was ever diagnosed with Autism), and others who blame mental illness and have jumped on the healthcare bandwagon.  Others blame the sensationalism of the media.  And others blame lack of school security and training of teachers (some even suggest that teachers be allowed to carry firearms!).  The day that happens will be my last day as a teacher to the public and my first day as a teacher to my own children as I home school them.

While families of the victims struggle to move forward, we as a society do not have answers.  School shootings and violence, including bullying and child suicide, are on the rise.  We didn't have these sort of problems fifty years ago, not to the extent we do today.  Ironic thing is, many of us weren't around fifty years ago, or were just young children at the time.  So where is all of this coming from?  What's the problem?  WE are.  WE are the ones who have created the present day society we live in.  So WE better do something about it, and fast.  Needed are leaders who are serious about making changes.  But that alone is not going to do it.  WE need to do this.  WE need to make this a better world.  WE need to care!  WE need to teach our children that violence is not the answer.  WE need to teach compassion and humanity.  I have been reading about people completing 26 random acts of kindness to honor those lives lost in Sandy Hook Elementary.  That is a wonderful place to start, but I ask myself, "Why does it take a tragedy like this to occur to do a random act of kindness?  Why stop at 26?  And why do you need to announce everything you are doing for recognition?"

I've had a lot of thoughts about all of this building up inside, in spite of the crying I do everyday when I think about what happened and the suffering that continues to happen in this world.  Thank you for "listening" and allowing me an avenue to release.

In the midst of all of this sadness, we captured on video part of a dinner conversation we had on boyfriends/girlfriends, kissing, and getting married.  It gave us a good laugh at the time and continues to do so.  If you could use a good chuckle or need to smile, like I know I have needed, check out this video:  Talking about marriage...

And some happy photos...

Loving his new robe!

Jack is getting so big!

Ryan made a craft in religion class.

Ryan having fun with his new game.

Ryan checking to see if Jack has a tooth yet.  He is certainly drooling a lot!

We are ready for a wonderful holiday season.  Merry Christmas!

DC

Week 139 - RIP little angels

26 candles for the 26 new angels in Heaven... may you rest in peace

Our hearts go out to the families of those who lost their lives in the Sandy Hook Elementary Massacre. As the stories unfold, never have I been more afraid and more proud to be a teacher.

DC