Happy for his sister!

Ryan and Julia came off of the bus today filled with excitement.  Julia said that she was chosen as the Citizen of the Month for her class.  Ryan ran up to her, explained that he heard her name on the announcements at school, gave her a hug and said, "I'm so proud of you, Julia!"  I am extremely proud of Julia, and Ryan, too.  It is wonderful that he can be happy for her and not jealous that she gets to experience things that he does not.  While he doesn't show signs of jealousy, I do think it hurts him at times.  Like with soccer, for instance.  Julia often scores multiple goals each game.  When they return home from their games Ryan will say something like, "Julia scored 5 goals but I didn't score any because I'm not very good at soccer."  It hurts me to see him display these feelings of inferiority.  Phil and I do try to encourage Ryan to try different things so that he can see what he is good at, but he doesn't want to and seems content.

He may go through all of elementary school never being chosen as Citizen of the Month for his class, and Julia may get the honor multiple times.  It doesn't mean that Ryan isn't trying as hard as she is.  He may have a wonderful year with lots of academic and social successes and improvements, and still not be chosen.  I think it is difficult for teachers to truly empathize with a special needs child without a personal connection.  They don't know the struggles Ryan goes through.  They see him at his best (thanks to medication) and do not get to experience the "downs" to realize how special and precious the "ups" are.  In all fairness, his teachers this year (and last year) have praised Ryan in other ways.  There are reward systems in place in the classroom and Ryan comes home beaming about being recognized for achieving certain levels.  He receives a lot of positive feedback from his teachers when he does what he is asked to do.  And maybe one day Ryan will go above and beyond and get special recognition.  In the meantime, he continues to strive for perfect attendance because he really likes to get that certificate at the end of the year!

Fall 2013 School Picture

Fall 2013 School Picture

Julia with her certificate and ribbon award.

 DC

Back To The Grind

Back To The Grind

We had great intentions to blog while in California but that didn't go so well.  And then the summer just seemed to slip through our fingers and here we are more than two months after our last blog.  So much for doing this on a weekly basis, hence the name change of our blog!  We just have too much going on!

Let's see if I can summarize our summer before Jack awakes from his nap...

At the end of June/beginning of July we spent nine days in California.  After four days of Disney, two days of Legoland, and three days at the beach house, we were ready to return to New York.  We had a terrific time but it wasn't really a restful vacation.  We packed as much as we could into our time away and I know we created memories for the kids that will last a lifetime.  Here are some photo highlights.

                               

 

We got lots of pictures with different Disney characters and princesses

Breakfast with Minnie and friends

Cars Land at Disney California Adventure Park

The Lazy River at Legoland Water Park

 

An after dinner stroll with Uncle Tim and Uncle Michael

This was a huge step for Ryan and a far cry from the hysterics of meeting Lola during our trip to California a few years ago.

Jack loved his first trip to the beach!

 

We waited until our trip to California to officially announce the big news that we are expecting our 4th child!  We wanted to surprise Phil's brother in person.  I'm due November 3rd.  Here is a picture of me at 30 weeks.

After our return from California we had a little over a week to finalize details for Jack's 1st birthday party.  We had 107 people in attendance!  It was quite the day including a water slide, lawn games, lots of food, and a baby gender reveal!

Anticipation leading up to opening the box of balloons.  Pink or blue???

It's a girl!!!

Ryan wasn't really sure what the pink balloons meant.  At first he thought Jack was now going to be a girl!

Jack on his first birthday!

And we continued to have a busy July and August with a week of camp, numerous visits up to nonna's and papa's house, a trip to Playland, a trip to Splashdown, numerous birthday celebrations, a bridal shower, a baby shower, a Renegades game, the Norwalk Aquarium, the 4H Fair, three Irish Dance competitions, a week of Irish Dance camp (for both Ryan and Julia), and preparations for back to school.

At camp

Ryan with his Godparents, Uncle T and Aunt Anne

Rockland Feis

Dancing on the dugout at the Renegades game

Performance with her dance school at the Putnam County 4H Fair

Fishing upstate

Fun in nonna's and papa's pool

Norwalk Aquarium

Performance at the end of Irish Dance camp.  Ryan was so serious as he concentrated on the steps.  It was so cute!

Catskill Mountain Feis

Sporting their new Brazil soccer shirts

Happy Birthday Papa!

East Durham Feis

Bow and arrow target practice

Loved driving the cars at Playland

I wonder what he's thinking...

Happy Birthday Grandma!

Happy 6th Birthday Julia!

But not all of the summer was fun and games and good times.  After experiencing weeks on end of numbness and soreness in my arms and legs, the neurologist sent me for an MRI.  I have several spots in my neck and back where disks are hitting my spinal cord and causing neurological issues.  I'm returning to work when the school year begins but I will be on limited activity.  It is difficult to lift my arms, stand for long periods of time, and walk up and down stairs.  I have numerous appointments coming up to work on a plan for treatment options.

In addition, we continue to struggle with Ryan.  He has many ups and downs and continues to display wild behavior, especially when not taking the Focalin.  He is unpredictable and can get very violent at times.  We were denied services through OPWDD through their 2nd step review and we felt extremely defeated receiving that news.  The cost of the psychiatrist he sees, simply to get the prescription for meds is ridiculous.  It is $350 a month and all he does is write the prescription.  We need to look into switching to someone in our plan.  With everything else going on we dropped the ball on taking Ryan to the psychologist each week, although I'm not sure what good that was doing either.  We worked in the beginning of the summer with a behavior analyst but it was difficult applying a lot of the techniques she trained us to do when we were constantly on the run and in different settings.  All of these setbacks built up and has made me feel like a failure where Ryan is concerned.  We dropped the ball on a lot of things this summer.  It's not that we don't see the value in these things, we are simply pushed to our breaking points.  We have so much going on and when you juggle too many balls at once, some are bound to fall.  But I'm confident we will pick those balls up and add them to the mix in due time.  School begins for the kids in a week and getting back to a schedule and routine will help.  Being home on maternity leave this fall and winter will give me more time to make the phone calls that I need to make and spend more time with Ryan getting him back on track.  Fingers crossed and prayers needed!

DC

Week 156

The kids having some Easter fun with their Campbell cousins.

We have a lot to share tonight because we didn't write last week, so here we go...

Let's begin with an update on Ryan's skin.  His legs are doing much better.  There are still some residual scabs, but the two medications that the pediatrician prescribed helped tremendously.  While I'm happy that he is no longer itchy and his skin no longer feels like sandpaper, I'm annoyed that he went through these skin issues for over 2 years and the issue could have been fixed with a prescription instead of him suffering through the scratching and bleeding.  I don't know why it had to get to the point it did for the doctor to offer him some relief.

We did not take Ryan to the psychologist this week because it was opening day of soccer and at the time of his last appointment we did not have his game schedule yet to make an appointment.  It worked out okay anyways since he already had a psychiatrist appointment scheduled.  We met the psychiatrist for the first time and he agreed that Ryan be placed on some medication.  He wants to treat Ryan's impulsiveness first and hopes that will help reduce the anxiety, rather than begin with an anxiety medication.  We were supposed to begin the medication on Saturday but the doctor put incomplete information on the prescription and CVS wouldn't fill it.  They put a call into the doctor, as did we, but he did not call back.  Hopefully we will hear from him first thing Monday morning and we can begin the medicine.  Ryan will also need to have lab work done for some baseline levels, and we will go back to this doctor in a month to share the lab results and an update on Ryan.  If we see an improvement, and Ryan is tolerating the medicine, then he will give us a new prescription with refills (hopefully filled out correctly this time!) ha ha  The appointments with this psychiatrist are huge monetary investments out of our pocket so we are praying that this is the best decision for Ryan and that it helps him.

On the day of the appointment with the psychiatrist I received a message from the kids' principal.  He explained that Ryan had punched Julia in the face on the bus.  Apparently Julia had switched her seat to a place she shouldn't be sitting (Kindergartners are supposed to sit in the front two seats of the bus) and Ryan told her to switch back.  Of course she argued with him and refused to move, and Ryan socked her a good one.  A lot of drama ensued with visits to the nurse, the Principal's office, and hugs from teachers.  Here we go again with Ryan trying to enforce a rule, by breaking another one.  He is so concerned with what is going on with everyone else and it gets him into trouble.  He simply cannot control himself when he realizes he is unable to control what another child or adult does.

We've always been worried about Julia and what all of this must be like for her.  If Phil and I are so affected by what is going on with Ryan, I can't imagine what it must be like in the eyes of a five year old who may not be able to comprehend everything going on.  Julia is extremely sensitive, and it broke my heart when I read the note I received from her teacher the evening of the punching incident.  I was so choked up I could barely read it aloud to Phil.  Here are excerpts from her teacher's message:

I did not know who had hit Julia this morning when she came in from the bus.  I sent her immediately to the nurse and told her to go to the office and tell (the Principal).  If I had known I would have handled it differently.  Julia was upset because she was hit, but mostly because she told on her brother.  We talked in the hall when she came back and she told me what had happened.  I told her that it was good that she told us and then that way we could help her brother.  We talked about how it was difficult because she loves him and she said that he is mean to her sometimes.  I reassured her that he loves her very much too.  She wanted to hug him so I called into the room... Ryan came out and then gave Julia a hug and things were better for Julia after that. She is such a loving child! Let me know if there is anything I can do to help Julia.

After some email conversations back and forth, her teacher said that she would alert the school social worker and psychologist and see if someone would speak with Julia.  We're hoping they can give us some insight as to whether we should be looking into some outside counseling for her as well, just so she can openly talk about her feelings regarding Ryan and how she feels.

Our Welcome DVD came in the mail this week and the kids immediately wanted to watch it.  They are very excited for our trip this summer that Grandma Campbell is taking us on.

On the "Jack" front, he is improving slowly but surely.  We had another bronchiolitis and ear infection scare last week.  His coughing, especially during the night, was terrible.  His breathing was so labored and the wheezing was so heavy that he was back on the nebulizer approximately five times a day.  He is back down to two times a day now and is sleeping much better through the night.  We made an appointment with a pulmonologist and the earliest appointment they were able to give us was a month away!  In the meantime, the pediatrician watched one of his coughing fits through a recording I made on my phone, and she felt he was having reflux issues again.  So he is back on the Prevacid in addition to the nebulizer.  Jack will be nine months this week.  He is approximately 25 pounds, and through everything he still remains happy and smiley most of the day!

On the job front, I do not know any more than I knew a month ago.  Only time will tell as the budget goes up the third week in May.  But I wanted to share a part of an email I received from a former student.  It is similar to many other messages and phone calls I received from former students and parents regarding the news that I was one of the 67 teachers laid off in my district:

I wanted you to know that it was heartbreaking to hear that you were one of the teachers, because you were truly one of the greatest teachers I've ever had, and you've had such an impact on me as I've grown up. 

While being laid off is not an ideal situation, I feel in my heart that everything will work out for the best.  With all of the new demands and the ridiculous testing that is going on, maybe it is time for me to pursue other career options.  Or maybe this will give me the time I need to devote to myself and my family.  Like I said before, only time will tell.  We're looking forward to getting answers about my job, getting answers about Julia's stresses as a sibling of someone with Autism, answers about Jack's breathing issues, and answers about what we can do to help Ryan.  We have a LONG "To Do" list!

Happy 11th Birthday in Heaven Helen.
Have a great week everyone!

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