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

Happy Fall!

Well we've all seemed to get back into the swing of things returning to school.  Ryan and Julia are doing very well and are getting glowing reports from their teachers.  Like with all kids, I'm sure, there are times when we have to work around Ryan's resistance to homework.  But there is a noticeable improvement from last year to this year despite the tremendous increase in the amount of work he receives (about triple the amount over last year!).  He has a math worksheet everyday and this is easy for him to do and he rarely gives us a difficult time about completing it.  It is usually the first thing he wants to get done, which as a math teacher, puts a smile on my face.  The reading and writing is where he gets stumped and causes the most resistance.  But with breaks here and there we can get through the homework.  It can spread out from 4 - 8 but we don't mind as long as it is getting done.  Things are going great with Ryan on the Focalin.  Our only concern would be the loss of appetite that he often displays.  He is so skinny as it is.  He takes the medication in the morning before he leaves for daycare and then again with the nurse at school at lunchtime.  During the last post I mentioned that we needed to change psychiatrists.  We have done that and now have someone in our plan.  And we have also worked it out where some of the monthly prescriptions can be written directly from his pediatrician, which is awesome because she is located about 2 minutes from home.

Jack has adjusted nicely to his routine at day care.  He often cries for a minute when I drop him off but it is brief and he enjoys his time there.  But I do love seeing his face when I pick him up in the afternoon.  It melts my heart at how happy and excited he is that momma is back to get him.  My trips dropping him off and picking him up will dwindle down as I will be home with the new baby and that job will now become Phil's until I'm ready for Jack to stay home with us.  Maybe at the end of December.

This is my last week at work, as I'm less than two weeks away from my due date.  Leave it to baby #4 for my feet, ankles, and legs to swell during pregnancy.   Definitely not fun and it has been a rough couple of weeks.   I finally packed my bag for the hospital and I think Phil and I have at last agreed on a name (we're not telling!)  We're all excited to meet our new addition to the family but I also know that I will miss my friends at work and my students.  In the grand scheme of things I know they will get by just fine without me and these next 8 months will be such a small portion of their entire educational career, but I will still miss them.

Ryan has been into drawing lately, more so than ever.  He draws these elaborate scenes in a notebook while he's in bed at night.  They range across a variety of topics but usually have something to do with either a book that he recently read, a show that he is obsessed with watching, or an event that took place that he was extremely excited about.  For example, our neighbor, a police officer, brought home an Army-type hummer one day and invited the kids over to sit in it and check it out.  Ryan went bananas over it and drew Army vehicles for several days in a row.

There are several birthdays this week in our family.  My Uncle Tony in Heaven would have been celebrating his birthday.  Last month his grandson, Anthony Robert was born at approximately 32 weeks.  He was just released from the hospital yesterday.  We are thankful that things are going well for him and we can't wait to meet him!  It is also the birthdays of both of my grandmothers and mother.  All three of these women sacrificed a lot raising their children.  My mom raised my brother and I while running our family business.  Her and my dad worked crazy hours each week to build the business and keep it running successfully for almost 30 years before they sold it.  My mom's mom raised 6 children during the day and then worked in the evenings when my grandfather got home in order to help support the family.  And my dad's mom raised four children in a poor countryside town in Italy before coming over to America and making a life for them here.  Mom's make such tremendous sacrifices for their children.  No offense to the dads out there, as you too make an impact on your child's life.  But there is something about a mother's bond with her children that makes being a mom the best feeling in the world.  I hope I am being the best mom I can be for my children.  I know they don't always show appreciation for it now but that will not stop me.  There are enough special moments to keep me going.  Here is one of those special moments.  This is an excerpt of an email I received from my daughter's teacher just a couple of days ago:

"I wanted to send you a quick message to let you know how much I enjoy having Julia in my class!! She comes in everyday with a smile on her face, ready to learn, kind words to others, and always eager to participate.  Today I had to take a half day, my daughter had a doctor appointment this afternoon.  As I was saying goodbye to the class, Julia looked up at me with a big smile and said, 'Mrs. Smith - are you putting on your Mom hat now?'  I cracked up!  I was thinking of her just now and wanted to let you know she puts a smile on my face."

Here are some updated pictures from the past month:

First Day of School

Ryan continues to struggle with his soccer skills, but I'm so proud of him for not giving up!

At 36 weeks.

Jack's first haircut!  I do hope the curls continue to come back, but he was starting to look like a girl and needed a trim!

A typical day for Julia who loves the outdoors!

Pumpkin decorating time!  The kids are super excited for Halloween.  Stay tuned for pictures in their costumes!

Speaking of costumes, here is mine this year.  I wore it a little early this year since I'm hoping baby girl Campbell will be here by Halloween!  My students got a kick out of it!  Here I am at 38 weeks.

Keep an eye out for the kids' pictures in their Halloween costumes (assuming Halloween is not cancelled a third year in a row due to some massive snow storm or hurricane).  And we will of course post pictures and an update when the baby is born.  Any day now!!!

DC

Week 166 - School's Out for Summer!

Summer is here!  Ryan finished up with a second year of perfect attendance.  Julia had perfect attendance this year too!

We were lucky to have my cousin here for a few days this week.  The kids stayed with her when school was not in session and it was a nice change in pace for them on their half days of school rather than going to day care.  Their fourth quarter report cards were as expected and we are very proud of what the two of them accomplished this year.

We finally got a letter back from OPWDD in response to our application.  It took over two months for them to review our paperwork and we now need to submit additional paperwork.  Ryan was denied services at this stage and everything is being sent to the second review committee.  We had his new psychologist and psychiatrist write letters of support and added them with the additional paperwork and reports that they were looking for.  We were told this step will take approximately two months as well.  Geesh!  We didn't ask for a lot of services; out of everything they provide we simply asked for someone to help Ryan with his schoolwork a day during the week.

His psychologist said that he is familiar with the process and it is typical for them to deny during the first round, especially for younger kids who may grow out of a lot of the symptoms they currently portray.  In his support letter he explained his assessment of Ryan and wrote, "As a past liaison between OMH (Hudson River Psychiatric Center) and the previously-termed OMRDD (from about 2006-2008), I am familiar with the referral and acceptance process for OPWDD services.  I believe that Ryan meets the criteria for OPWDD services and I hope he will be given favorable consideration."    Hopefully we hear word by the end of the summer.

Jack turned 11 months old this week!

Last soccer game

Add caption

Father's Day dinner

Ryan and Amelia

Over the past two weeks we've been working with a Behavior Analyst through a company called Little Steps Great Success.  The analyst has interviewed us several times and comes to the house once a week to observe Ryan in order to create a Functional Behavior Assessment.  Things are going well so far and she has been able to collect data on Ryan. We were hesitant at first worried that she wouldn't be able to collect any data since Ryan tends to be on his best behavior around new people.  But during the first full session Ryan was very resistant to doing the tasks she asked of him and she was able to observe a part of the Ryan we see on a daily basis.

Ryan is still taking the Focalin twice a day.  His eating habits have changed drastically.  His appetite is about a quarter of what it used to be.  He rarely finishes a meal (even with smaller portions) never mind asking for seconds or thirds like he used to.  Sometimes he gives us a hard time about eating and skips a meal altogether.  This is common with this type of medicine.  I just hope he doesn't lose too much weight as he is already so thin and bony.

Julia performed a solo in a recital this weekend.  Ryan said the best part was when she came out dancing and the audiance said, "Awwww!"  Here's the link to the video- Julia's Solo

We're looking forward to sharing our next post with you from sunny California!

DC

Week 157

We had yet another extremely busy weekend.  I took the kids to see The Little Mermaid performance at my school.  They both loved it and were excited to take pictures with some of the cast members.

Also, Ryan had a soccer game and Julia had her Irish Dance Recital.  She won a certificate for her performance in class all year and she was thrilled!  And Ryan was so proud of her.  After she performed on stage he tapped the shoulder of the woman sitting in front of him and said, "That was my sister!"

Ryan continues to struggle at soccer.  This may be the last season for him until he expresses some interest in playing.  We haven't found a sport yet that Ryan enjoys enough to stay focused and actually gain skill from practicing.  But then this weekend Phil put out the basketball hoop that Uncle T bought the kids for Christmas and Ryan has been asking to practice everyday so far.  He even came off the bus today and immediately picked up the ball and started shooting.  |Now we just have to pick up a second basketball so that they can each hold their own and practice dribbling and shooting.  The sharing of the basketball has not gone well so far.

I forgot to mention in last week's blog that I was finally able to get all of the paperwork together needed to see if Ryan is eligible for services through OPWDD (Office for People with Developmental Disabilities).  We mailed it to our local office and the intake coordinator told me it can take up to two months for our paperwork to be processed and for us to hear back if Ryan is eligible.  It may take just as long to establish services if he is deemed eligible.  Our primary request is for something called respite services.  It is like "babysitting" and we are hoping we can schedule this during times when Ryan can work on his homework with the service provider.  We are hoping he will respond more positively to someone else than he does to us.  Unfortunately, even if approved, I can't see this starting before the end of this school year but we will be more than happy if something is put in place for the start of his second grade year in September.

Report cards were sent home this week and Ryan received a very typical report.  There was improvement in several academic skills and still room for improvement in some of the behavioral areas.  His reading level, which was reported as below level first quarter, then on level second quarter, was back to below level for third quarter.  Ryan continues to have difficulty not calling out in some of his special classes where the structure is different than his co-taught classroom.  We will be attending his annual review at the end of this week and I'm sure we will get more information across the board on how he is doing in regards to the testing that was completed.

We are into two weeks on the medicine (Fluoxetine which is also known as Prozac).  Dr. Hahn said it may take three weeks for us to notice any positive changes.  Ryan continues to have ups and downs, especially in the areas that the medicine was supposed to help with - his impulsivity and anxiety.  I hate to say that I feel his behavior has been worse on some days since beginning the meds.  But we will wait it out until our appointment in two weeks and then make a decision if it is working. It is a very low dose (5 mL).  Maybe this is not enough of a daily dose to make a change. I don't know any other 6 year olds on this medication to compare their weight and what dose they are on.  I guess this is something we will need to discuss with the doctor.  On a positive note, Ryan takes the medicine with no problem.  He does the syringe in his mouth all by himself at dinner time.   It has a strong peppermint taste so he immediately follows it with a drink or bite of food.  He complained the first couple of times but now there aren't any issues.

I sometimes feel like we don't say "Thank you" enough.  Just about everyday I have someone reach out to me to check in on how Ryan and the entire family is doing.  It is so greatly appreciated.  The support reminds us that we are not alone and that there are so many people that care enough about our family to continue to stay updated through this blog.  Many thanks!!!

DC

Week 130

We had a good week with Ryan.  He seems to be settling in with the bus and we have received nothing but good reports from school.  He had a spelling test this week and he spelled 9 out of 10 words correctly.  For one of the words he wrote a q instead of a p.  We are still seeing some fairly wild behavior at home but it appears that he is keeping it all in at school and letting us have it at night!

Homework is something that we are doing but it is still a struggle.  He gets frustrated quickly and wants to throw the pencil down and leave the kitchen table.  He eventually completes the work but he wastes more time complaining about doing the assignment than it takes to complete the assignment.  Writing is still something that he tries to avoid but we are working on it both here and at school.   It is getting better but it is something that we have to carefully plan and make sure he does when he is in a good mood.  We are getting better.  We were watching Julia's soccer practice and waiting for Ryan's to begin and he got a big kick out of doing his homework on a clip board outside.  Not sure if that will work again, but it worked on a busy night.

We had another crazy Saturday morning with Religion ending at 10:30 and soccer beginning at the same time.  We thought that Ryan would have a difficult time coming to soccer late but he has taken it in stride.  He is perfectly fine coming in late to the game and it is not effecting him at Religion.  He is even taking to the Religion classes extremely well.  We thought that we would have to convince/drag him to class every Saturday morning but he is excited to go.  We were also worried that he would not be able to make it for the 90 minutes.  We keep getting good reports from the two volunteer parents that are teaching the class.  And on the soccer front now Ryan only wants to play on the field that I am coaching on.  If you recall last year, he did not want to play on the field that I was coaching on and it took a great deal of convincing to get him on my field.  This past weekend the other coach and I decided that we are going to switch fields at half time to work with all of our players.  Ryan did not want to switch to the other coach and insisted that he stay with me.  Luckily another player also did not want to switch and insisted that he stay with the other coach.  It made it easy but it also reminds me that for even simple changes of schedule I still have to prep Ryan.

Ryan has made such progress from when we started this blog that I sometimes forget how difficult it was in the beginning.  We have been very lucky with Ryan and all of the progress that has made over the past few years.  The forgetting to prep him for the coaching change was one thing and another was at a Birthday party this weekend.  We have been letting Ryan cheat when he goes to birthday parties.  When it came time for cupcakes one of the young girls handed Ryan a plain cupcake!  The other cupcakes were all decorated and he was upset because the girls were asking the other party guests which one they wanted and Ryan did not get a choice.  He got upset and ran out of the room.  Dawn had to go get him, calm him down, and ask him why he was upset.  Luckily he was able to tell Dawn why he was upset and was able to return to the room and get another cupcake.

Below are some pictures of this week's events.

Ryan at a birthday party applying what he has been learning at gymnastics.

 

Ryan takes a liking to all little kids and it is great to see him interact with them and share his gentle side.

 

Ryan and Julia added their decorative talents to our anniversary cake.
10/10/12...8 years!

 

PC

Week 125

Back to School!

This is a week that Dawn thought would never come, both Ryan and Julia start full day elementary school.  Ryan made the transition without missing a beat.  He completed the first day of first grade with no issues and really enjoyed the experience.  We will see what happens when we start getting homework, but we are off to a good start.  Below are some pictures of the first day of school.

Ready for first grade.

Look out here come the Campbells!  

A sweaty mess after the first day!  It was a hot day.

Ready for day two!  Julia taking the bus for the first time.

In an effort to get the kids to help get ready for school Dawn came up with a chart for them to follow each morning.  It is a challenge getting the two of them ready, having Jack, and the neighbor's son is also joining Dawn and the kids waiting for the bus.  The list is make your bed, get dressed (we lay out clothes the night before), eat breakfast, brush your teeth, comb your hair, go to the bathroom, get your shoes on, and get ready for the bus.  So far, this chart has worked and they are excited to check off each item.  Our goal is to make this part of the routine that they will no longer need the chart.

Off to a good start!  

Dad and all three children.

We had an engagement party this weekend for Jimmy and Mary's son at the Sunset Cove in Tarrytown.  Ryan cheated a lot with his diet but his behavior was good.  Hopefully it will continue as we have a full week of school.

Watching a video at the party.  

Watching the ducks in the river.

Mommy and Ryan!  

On the baby front, Jack has started to sleep through the night.  He is now sleeping 7 to 9 hours a night.  Hopefully he continues that trend and below is a link to a happy baby after a good nights sleep.
Happy Baby Jack video


We started soccer this week for both Ryan and Julia.  We did not get any pictures of Ryan this weekend because his game was during the tornado watch for our area.  We actually got the game in and he did great.  No goals but he played great defense and played in the rain.  Last year, he would have never played in the rain.  However, this week he played in the rain and had a great time.  It was also an easier transition because most of his soccer team are repeaters from last year.  He walked onto the field knowing the majority of the team and what was expected of him during the game.  He actually tried to help a few of the new players that never played by showing them what they needed to do and where to line up to start the game.

We also began our Religious education classes on Saturday as well.  It is an hour and a half and we were worried about how he was going to handle the class.  In our mind it is one more day of school.  However, the Sister in charge brought in a special education teacher, who is a volunteer to help in his class.  He came out of the class with a big smile on his face and told me that it was a lot of fun.  He also asked us if we knew who created everything?  God.

We had a good week with Ryan and we hope that this continues.  We know that we will have our ups and downs this year with Ryan but so far we are off to a good start.

PC (photos by DC)

Week 105

April 17th marked an important anniversary for us.  Yes it was my brother's and sister-in-law's anniversary, but they are sharing their day with another event as well.  It is the 2 year anniversary of Ryan starting the GFCF diet.  We feel this is a huge milestone.  When we began we had short-term goals in mind.  Never did we think we'd last a year, let alone 2 years!  Each time we try to deviate from the diet the results bring us right back on track.  There are times when Ryan has to "cheat", sometimes several times a week, and we pay for it afterwards.  It seems his skin is paying for it as well lately as the smooth, soft skin he had a few months ago has been replaced with patches of rough, itchy, blotches.  I have to admit, we've gotten a bit lazy.  We no longer bring his food with us when we go to parties, or at least to the extent that we used to.  We let him have what is there.  He's even more inclined to cheat lately.  He recognizes the difference in taste and sacrifices the way he is going to feel the next day, to enjoy living in the moment.  He also knows exactly what to say to avoid an argument with us... smart little munchkin! Ryan: "It's not gluten-free, so I'm just going to have one, okay?"

Our goddaughter Amelia made her First Holy Communion this weekend.  Here are some pictures of the special day:

On the 17th this week I had a follow up appointment with the specialist to look at the baby's heart and bowels.  The baby is growing beautifully and perfectly on track.  He/she is at 2 pounds 1 ounce.  The bowels and entire digestive system seems to be working normally.  I was there for over an hour and the entire consumption/elimination process was witnessed.  But there are still some spots on the small intestine that will keep me going back to see this specialist, at least for one more follow up before the baby is born.  It may be signs of an infection, but the bowels are so small it is difficult to tell.  So she wants to keep monitoring that section and the baby's growth, and it is suggested the baby gets an x-ray after birth.  If there is a problem with that section, there is plenty of small bowels compared to large bowels, so it is the easier of the two to perform surgery on.

Pictures from Ryan's soccer game this week: 

There is a noticeable improvement from the fall season to the spring season, and Ryan seems to be enjoying himself more.  Although he's had 2 games and hasn't scored a goal, he remains positive.  He's scored goals in his scrimmage matches and he just seems to be happy to be doing something different.

We received Ryan's Quarter 3 report card this week.  He received 2's (Developing Skills to Meet the Standards) and 3's (Meets the Standards) in most areas.  Under the responsibilities, he scored "Needs Improvement" in two areas:  Engages in activities, and Demonstrates self-control.  Here are the comments from his Kindergarten teacher and his P.E. teacher: 

Perfect attendance so far...impressive!!!

His list of speech and language goals also arrived and 8 of the 10 are "progressing gradually", meaning he may or may not meet this goal by the target date, and the other 2 are "progressing satisfactorily" meaning he is on track to meet the goal by the target date.  I think we would have seen much different progress had Ryan continued speech services from last school year into this school year.  His S&L remained stagnant and did not improve enough on its own compared to his increase in age.  His annual review is coming up in May so at least we have proof that he needs the help and needs to continue to receive services in first grade.  We did get a call from the school and they are going to recommend the inclusion program for 1st grade.  This is what we expected him to receive this year, but they did not have this program at the kindergarten level at our particular elementary school and we opted to have a shared aide for Ryan rather than bus him to a different elementary school.   His teacher feels he needs more support than he is receiving from the aide in the regular classroom.  With the inclusion program, he will be in an integrated setting (both regular and special education students) and receive the support from a special education teacher and teacher assistant, as well as the regular ed teacher in the room. 

In the mail this week we received a framed puzzle of a picture from last year's walk.  Ryan, and Julia, immediately noticed that one of the pieces was missing.  We tried explaining to them the symbolism and meaning behind the missing piece.  The company taped the missing piece behind the frame.  Phil seems to think it is there in case you couldn't "handle" not having a piece missing you could fill it in.  I like to think it is taped there in hopes that we can complete the puzzle one day when the mystery of Autism is solved and a cure is discovered. 

Ryan knew that this said "The Ryan Express" and "2011".  When I pointed to the $ amount, he said, "That means a lot of money!"

Our team has been established on the official walk site.  If you would like to walk with us on June 3rd, please click the link below to join our team:
The Ryan Express Team Page

DC