Week 150- Prayers Needed

Please join our daily prayer chain...

Heavenly Father,
We adore you, the Father of us all
We ask you to assist those families with an autistic child
Give these parents wisdom and angelic help in their care for their children
Help the child's siblings to be patient and to grow in self-giving love
Grant these families your special support and give them friends who understand and love them
Most merciful Father,
Give light to scientists and doctors so that they may find a solution to autism
Through Christ our Lord, Amen.

My mom sent me this prayer.  She heard it last night and copied it down.  It comes at a perfect time, as Ryan continues to struggle with his emotions.  We're seeing behaviors that we have not seen since before we began the GFCF diet and treatments for Ryan. Family members that see Ryan often have commented about how "off" he seems and how violent and anxious he has become.  However, it is almost as if he has a double personality.  Caring Ryan makes his way out at times and it is so nice to see.  Over the weekend we were at a birthday party and a little girl fell and Ryan ran over to her, helped her up, and said, "Are you okay my little friend?"  This is the same boy who in an instant became angered doing his homework this week and jabbed me in the face with his pencil.

Ryan's increasing violence towards us has sent us into a panic.  It is scary to watch him meltdown, punch things, scream at people, throw things, and reach for knives because he says that he wants to stab us.  This is not the Ryan we know and love!  This is not our sweet, gentle little boy.  Something is wrong!  And what seems like minor things are what triggers his biggest episodes.  His emotions are in overdrive and we need professional help to get to the bottom of this.  We used to be able to help him cope during most meltdowns, but now more often than not, we are unable to help him.  Our bag of tricks that used to get him to calm down and put a smile on his face, no longer work.  They only irritate him more.  We can't reason with him.  

On Friday night I contacted his developmental pediatrician, Dr. Cowan, who was away at a conference but read my email and called me back almost immediately.  He feels Ryan may need to begin an anti-anxiety medication. He said it sounds like Ryan is dealing with something big inside.  It can be a mix of school, peer relations, hormones, as well as other things. He holds himself together all day at school and can't control himself any longer once he gets home.  School personnel are working with us to secure outside counseling, and a meeting is being set up to revisit his counseling sessions at school and add individual counseling sessions to his IEP.  Last year we were denied individual counseling as part of his IEP and instead given group counseling with his peers.  We have an appointment set up with  a therapist who specializes in working with children with special needs, but unfortunately that appointment is still two weeks away.  We are working on getting a psychiatrist to see Ryan.  Any suggestions of someone in the Dutchess/Putnam area, please let us know!  We're waiting to hear back from his regular pediatrician for recommendations, but if she doesn't have any we're heading into this blind.  

We're also trying some new supplements as per Dr. Cowan's suggestion, including L-Theanine which is an amino acid and may help curb anxiety.  He also suggested Ryan take a bath in Epsom salt since the magnesium may have a calming affect on him.  Ryan took one on Friday night and enjoyed it so much that he asked to do it again on Saturday and Sunday.  I pray that he has a good day at school tomorrow.  We will, as always, continue to keep everyone updated.  And I ask again that you join our prayer chain!

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 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 129

First and foremost I want to wish Ty a Happy 5th Birthday.  Over the course of the past couple of years we've followed Ty's blog and have shared Ty's story on this blog.  On October 4th he turned five years old.  Ty, who lives just a couple of towns away from us, has cancer and things are rough for him and his family.  Prayers are needed, as well as a miracle.  Please read his mom's blog posts about his birthday...www.superty.org
 

Bus Update

At the beginning of the week I contacted the school's psychologist and Ryan's teacher to make them aware of the bus situation with Ryan. We spoke about some role playing that can be done during his counseling sessions with the social worker, and his teacher was going to remind the class about appropriate behavior on the bus and what to do if someone is bothering you.  The psychologist was also going to relay the information to the Assistant Principal and get back to me; I haven't received any calls yet.  I check with Ryan often about how things are going.   I can tell he is still hyped up on the bus.  Twice during the week when getting on the bus in the morning he stopped to tell the bus driver a story and both times the bus driver had to cut him off and ask him to find a seat.  Just about everyday he came off the bus full of energy.

Speaking of his energy, I also spoke to his teacher about his attention in class.  I explained to her what we are seeing at home and she said she doesn't see any of that in school.  He is on task and keeps up with the class.  We both thought that Ryan must be trying so hard to stay focused and calm in class that he sees the bus and home as his outlets to release his built up energy.  It is time to get Ryan back in for an appointment with Dr. Cowan and hear his suggestions.  We've always been against putting Ryan on a medication to help control his ADHD but it may be something we need to consider.  His behavior during the week can be so erratic that it is turning our household upside down.  We're trying to keep him busy and give him other outlets to burn off energy at, with activities like soccer and gymnastics.  He enjoys doing these things, but doesn't seem any calmer when he returns home.  We will keep trying our best!

Ryan and Julia at the Fall Festival hosted by Adams Fair Acre Farms

Fun at the Fall Festival

Jousting...they were so excited that they were allowed to fight with each other!

 

Ryan was a little timid at first, but by the end of his ride I heard him telling this employee that he was going to come back next time with an apple for the horse. 

Jack didn't go to the Fall Festival; he spent some time with daddy at home.

Decorating his pumpkin from grandma

Ryan stayed on task for 20 minutes to complete this homework assignment.  After coloring in question #2 out of the lines, he decided to take his time and color the boxes for the other questions much neater.  After he was finished he made up a math worksheet with addition problems for the two of us to work on.  Ryan loves math!

The kids playing with their new cooperative game.  It was so nice to watch a game between them that didn't involve one of them winning and the other losing.  Thanks, Bridget!

Painting pumpkins for our front stoop

Out of the blue Ryan wrote a note to papa and asked us to mail it to him.  
Video:  Ryan's Note to Papa




































DC

Week 74

Back to School night and meeting Ms. Allen

This week we met with Ryan's teacher and teacher's aide on the afternoon of Parent Night.  They seem fond of Ryan and were willing to listen to some of our concerns and suggestions for Ryan to have a successful year.  We learned that Ryan has already mislead them in to believing that he does not eat breakfast in the morning before going to school.  Technically, that is true.  He doesn't eat at home, he eats at Young Hearts when he arrives there at 6:30.  He would arrive at school, saying he is hungry.  On the day we met with his teachers, that very morning he claimed of hunger and no breakfast at home when he arrived to Kindergarten and they allowed him to eat at a snack.  A snack of goldfish no less, which are not gluten free!  We were surprised to hear that Ryan accepted this gluten free snack.  He is usually so good about telling others when he is not allowed to eat something.  And they felt terrible when we alerted them to the fact that Ryan is on a special diet and it is outlined in his IEP.  Both Phil and I know what it can be like at the beginning of the school year getting to know all of the kids, so we can understand how they may have overlooked that on his IEP.  We also informed them of the breakfast situation and that it would never be the case that he doesn't eat breakfast before getting on the bus.  He is at Young Hearts for two hours prior to the bus coming, so he has plenty of time for a good meal!

Later on that evening I went back to the school for Parent Night and learned a lot about his teacher's expectations and the routines they are developing in the classroom.  I think Mrs. Allen will be a good match for Ryan.  She is caring, but also firm and routine oriented, and Ryan needs that.  It was my first time on the other side of the desk for one of these nights and I certainly like it better this way... less stress!  I'm not sure many parents understand the stressful part of being a teacher.  We know at times Ryan may add to that stress so we are planning to do our part to keep Ryan prepared and encourage him to do what is expected of him.

Ryan has already been given some handwriting assignments.  Here are some pictures of the kids working on their homework during the week.  (Julia wanted so badly to do homework as well!)

DC

Soccer Practice

We had our first soccer practice this week and of course it was a challenge with the fields still being closed.  The league called at about 5:00 PM to let us know that the fields were closed and that we would have to relocate our practice.  I sent an email out but only half of the team got the message and this was the week that the other coach could not make practice.  So by the time I got to the new field, had a parent volunteer to drive to the other field to see if he could find anyone, the other parents left all mad.  But we had a good practice.  He and another little boy decided in the middle of practice that they did not want to practice anymore and sat down to watch a video that Julia brought.  Julia came with us because it was back to school night at Ryan's elementary school.  However, after 5 minutes they both rejoined us without any prodding from me or other parents.  After practice was over the whole team ran over to the playground and all had a lot of fun running around.  Hopefully they will still enjoy that same type of relationship at the end of the season but we are off to a good start.  Next weekend, weather permitting, we will have our first game.

Meeting Dr. Cowan.

On Thursday, I took Ryan to meet Dr. Cowan.  This was our second meeting with Dr. Cowan but the first time that Ryan meet with him.  Ryan did great.  There was a train play set in his office and Ryan immediately started playing with it.  For over an hour Dr. Cowan put Ryan through a variety of different exercises both physical and verbal.  He had him write his name, draw different shapes inside one another, and had him copy and build different shapes using blocks.  It was easy to see that Dr. Cowan does this type of assessment a lot for he was able to guide Ryan through several transitions.  One of the most effective ways was using slight of hand to get Ryan ready to focus on the next task.  Ryan did great on all the tasks.  Dr. Cowan had a Richard Scary book out and was having Ryan explain to him what was going on in the pictures.  He was doing such a good job that Dr. Cowan turned to me and asked if Ryan had this book at home, which we do not.  Ryan blew me away with two of the tasks that Dr. Cowan did at the end to demonstrate Ryan's learning style.

One of our biggest worries with Ryan over the years has been him following directions.  He is good at one and sometimes two step problems but three have always been a struggle.  Dr. Cowan held up three different crayons and asked Ryan to put them in three completely different areas around the room.  Ryan did this without issue.  When Dr. Cowan did the same exercise but put the crayons on the table instead of holding them up in front of Ryan, he did not do as well.  He was able to do the first and third but forgot what to do with the middle crayon.  The last exercise really blew me away.  He had Ryan describe to him a movie that he just saw.  He drew six different boxes and inside each of those boxes he drew a small picture describing what was going on in the movie.  He then had Ryan come over to me and explain what was happening in each of the boxes.  Then Dr. Cowan took the paper away and quizzed Ryan.  He asked him what happened in the 4th box and Ryan described what happened in the square.  He quizzed Ryan on two more boxes not in sequential order and Ryan described it perfectly each time.  When I dropped off Ryan with Dawn, we did the same exercise and he was able to repeat the story and got the squares that I selected correct.   This was absolutely amazing.  Dr. Cowan illustrated that Ryan thinks in pictures, not words.

At the end of the appointment, Dr. Cowan diagnosed Ryan with Systematic Pragmatic Language Disorder (SPLD).  The ironic part is that this is not something schools test for and was one of the reasons Ryan tested out of Speech.  This is something that we will have to look into but it did give us a lot to work with both at home and at school.

Community Day Parade

On Saturday the town had a Community Day parade ending at the town fields for a huge carnival.  It was a nice parade but really disorganized.  They had all the under-ten players arrive an hour before the parade starts and just had them wait in a parking lot,.  It was total chaos but Ryan did well waiting.  He ran around with his other "orange teammates" and did well marching in the parade.  He did have one melt down after the parade was over.  There was a huge inflated slide in the middle of the carnival that he wanted to slide down very badly.  However, the line to get tickets was huge and just as equally long was the line to get on the slide.  We did not have time because Julia had to get to her audition for the Nutcracker.  We were able to go on one ride with Amelia and Alyssa, who along with Uncle T came to the parade but that was all we had time for.  Ryan still wanted to go on that slide and we did have a little difficulty talking him out of going on that ride.  But he eventually came around and left with us peacefully.  I was thinking that with the old Ryan I would have had to carry him out kicking and screaming out of the carnival. I like this new Ryan better. 

Waiting for the parade to start



Ryan very focused!

Stopping along the parade route to say "hi".

PC

Week 72

With the craziness of Hurricane Irene we did not post a blog last week.  I guess it was a good week to skip because we didn't have any new updates to share.  The kids spent most of the week up nonna's and papa's house.  Unfortunately the weather was not great and most of the time was spent indoors.

But we made up for a slow week with an extreme busy one this time around!


On Monday Ryan enjoyed celebrating Julia's 4th birthday.  Her party started at her dance school where the kids practiced dance moves, played games, and came up with a short dance routine.  We then headed over to a restaurant for pizza and cake.

Princess Julia and King Ryan

Ryan did a great job following directions, and enjoyed doing all of the dance moves.

This video is a MUST SEE!  Look at how Ryan is doing his best to concentrate and follow directions. (Maybe we should have signed him up for dance instead of soccer!) Then watch it a second time to see how Julia is following along, but a step behind everyone else because she would rather look at herself in the mirror than at the instructor!  These kids are a riot!

Click this link to watch the video: Dance Moves

Ryan loved Julia's cake so much that he told me he wanted a castle cake for his next birthday party!  Yes, I made the cake (with a lot of help from my friend Donna!)

As if one day of birthday activities wasn't enough, the next day Ryan attended his cousins' birthday party.  Amelia and Alyssa chose a Wizard of Oz theme.  They rented a big movie screen and played the movie while the guests sat on blankets and chairs.  We ate popcorn and snacks and cupcakes.  While most of the kids ran around waiting for it to get a little darker so the movie could begin, Ryan plopped himself down on the chair and waited patiently.  He didn't want to miss a thing!

Amelia and Ryan

Julia and Alyssa

Some of the kids wanted a picture with a surprise guest... the scarecrow!  Yes, that's me!

Before the summer ends and the new school year begins I thought it would be nice to stop by Noah's Ark so that the kids could see their old teachers again.  So on Wednesday we did some chores and then headed to their former school.  There were lots of hugs and tears... they missed the kids and the kids had missed them!


On Thursday Ryan was scheduled for surgery at 9:30 in the morning.  His doctor needed to remove the tube in his left ear (which was implanted February 2009 and still hadn't fallen out on its own) and place a patch over the spot where the tube was.  I was anxious about lots of things... him giving me a hard time about not eating or drinking in the morning, bringing him there by myself because Phil had to work, and trying to keep him calm so that he would cooperate.  I prepped him the night before and let him have a special toast and water snack in his bed (to which he replied "we've never done this before") and told him that he needed to fill his tummy before bed because we were going to skip breakfast in the morning.  He also helped me pack a stuffed animal and some snacks for the car ride home.  He wanted to know why he couldn't eat and I told him the doctor needed his stomach empty so that he could fix his ear.  He seemed to be okay with that.  

When he woke up in the morning he was okay with Julia leaving with Phil to go to school, and he was even okay getting ready and skipping breakfast.  When we got to the ambulatory surgery office he was a bit skeptical because it wasn't the usual office we go to for his ENT appointments, but he was happy to be there once he saw all of the toys they had set up in the waiting room. 
 
When we were called into pre-op, I ran into a bit of a snag.  Things had been going so smoothly up to this point but then the nurse had given him a hospital gown to put on, and he did not want to get undressed.  I could tell he was nervous; he was looking around at everything and he didn't even want to sit on the bed.  A movie was playing for him on the TV and he sat in the corner and watched.  He kept asking me if he was going to get a needle and if they were going to do something to his body.  I did my best to reassure him, and even got him to sit on the bed next to me.  He was very brave and did a great job while they took his vitals.  One of the nurses gave me my outfit to put on and told me that if I wanted to go into the special room to blow up balloons I had to wear it.  Once Ryan saw me put on my "surgical gear" he put on his gown and said he wanted to blow up balloons too.  The nurse "prepped" Curious George and gave Ryan an oxygen mask to play with and told him to practice blowing into it.  They then gave him a little liquid sedative (which he drank with no problem) to keep him calm.

At one point a nurse told Ryan that he looked like an astronaut with the mask on his face.  She then asked him if he wanted to go into space on a rocket ship when he gets older.  He replied, "No, cause then I would miss my family."  Awwwwww!!!!!  

He let us wheel him into the operating room.  The toughest part was putting the mask on him.  He was willing to put it on (and he started to blow into it because he thought he was going to blow up a balloon) but once he started to smell the gas, he fought it.  He shook his head back and forth for about 20 seconds until his eyes rolled into the back of his head and he was out.  The entire time I leaned close to him and rubbed his head and told him that it was okay and he could go to sleep.  It was the longest 20 seconds of my life!


The procedure took a mere 15 minutes and the doctor came out to tell me that everything went well.  About 20 minutes later they brought me into the recovery room and I stayed with Ryan while he slept.  

 He looked so peaceful, and then all of a sudden, about an hour into his sleep, he jolted straight up and started looking around asking me why he was in a different room now.  He wasn't in any pain and he kept talking about how he went to go blow the balloon and he fell asleep, and then he would check with me to see if that was correct.  I told him that he fell asleep, then doctor fixed his ear, and then they rolled him into this room so that he could finish sleeping.  Once he was discharged he was so excited to ride in a wheelchair back to the car. 

He relaxed at home for a couple of hours and then he was back to his old self.  He came with me to pick up Julia from her first day at her Pre K class and by late afternoon he was running around playing with Julia as if nothing had happened.  The only time there was any indication of a procedure that day was around bedtime when Ryan complained of a headache.  He complained twice which he rarely does so I knew it must be bad for him to say anything.  I gave him Tylenol and let him stay up a little extra time until he felt better.

On Friday Ryan attended Young Hearts for the first time.  We wanted him to get acquainted with the building, his classroom, and the teachers before he officially starts on Tuesday.  Tuesday will also be his first day of Kindergarten so we wanted to ease him back to school with just one new place at a time.  They said he had a good day; he made new friends and had fun playing.  He was smiling when we dropped him off and smiling when I picked him up.


It is hard to believe that the summer is coming to a close and school is right around the corner.  It was not a very "academic" summer and I'm sure Ryan has regressed with many educational tasks.  But he advanced in many other areas.  His social skills have progressed tremendously, as well as his communication skills.  He is not as shy as he used to be, he opens up more frequently about how he is feeling, and his patience has grown.  When he loses his temper or has a meltdown, we're finding it easier to bring him out of it than in the past.  We've also noticed that he is better at following directions and his memory is sharp.  And best of all, in my opinion, is the increase in his affection.  I've been getting showered with hugs, kisses, and I Love You's!


DC

Week 70

Dr Steven Cowan

We decided to try a different doctor after our last appointment with Dr. Bock.  If you recall we waited 45 minutes in an exam room while he finished his dinner.  We were also getting concerned that after each visit with Dr. Bock we would be putting Ryan on a different supplement.  We actually stopped all of his supplements recently.  It was getting to be too much.  Dawn found this doctor through one of her work friends that was bringing her son to Dr. Bock but decided to try this new doctor.  We meet with Dr. Cowan for about two hours and we both like him and his approach.  This appointment was only with Dawn and I; Dr. Cowan did not want us to bring Ryan with us.  He believes that parents are more honest without the child present.  He is a pediatrician by training and shared our belief that Ryan was on too many supplements.  We spent the first 45 minutes talking about Ryan from birth to now and he took lots of notes and asked follow up and probing questions.  He looked over all of Ryan's lab tests and all of the supplements that he has been on over the past year and a half.  

For the next 45 minutes he went through his philosophy of different types of brains and how each section of the brain works with the other parts of the brain.  While this part felt a little long to the both of us it was interesting if you looked at it from some of the brain research classes that I have taken over the years.  We also went over a few steps and suggestions for us to discuss with the teaching assistant that has been assigned to Ryan when he goes into Kindergarten.  These were fairly practical suggestions and something that we will discuss with the teacher and the assistant when we meet with them in the fall.  


We are still going to have Ryan on the GF/CF diet but he wanted us to try a different approach with the food.  He wants us to limit the amount of carbs that Ryan is eating and to increase the amount of protein that he is eating.  He also wants us to try getting him protein for breakfast to balance out any carbs we give him.  We are not sure how we are going to do this but we are working on a plan.  He is still going to have us give him oils and supplements but these are going to be at different levels and a more manageable amount.  We are still working out the dosages with him but we will keep you updated on the types and levels.  We are still going to be giving him injections of B12 but these are only going to be once a month as opposed to every other day. The biggest change in his diet is that we are going to try to re-introduce eggs, starting with once per week.  We will keep you updated.  


One of the interesting things that Dr. Cowan spoke about is that when Ryan gets to the point that he can come to us and explain that he is afraid of something, like school, then he will no longer be Autistic because he is at the point of being able to make connections and communicate effectively with us expressing his fears and asking for help.  Both Dawn and I thought that this was a little out there but it did stick with us.  The ironic part was later on that evening when we were putting the kids to bed, Ryan came out of his room and told us that he was afraid of going to sleep!  Not sure we are ready to cancel our next appointment but it was very funny.  Our next appointment is in September and  we will be bringing Ryan in to meet Dr. Cowan.  

PC
 
We celebrated a few birthdays this week.  Phil's mom came during the week so that we could celebrate her birthday as well as Julia's since she will be in Pittsburgh visiting Phil's sister and her family for the remainder of August.  Here's a nice picture of the kids with their grandma:

We also went to Norwalk, CT to celebrate Luke's First Birthday.  Luke is the son of Phil's cousin.  The kids had fun playing on the playground and Ryan did a good job sticking to his diet.  He did sneak in a few pieces of buttered popcorn, with a sly smile on his face each time.  But when cake and ice cream came out he was excellent about asking for his special cupcake.  

I want to share two stories this week where Ryan proved to be very protective of his sister.  The first took place in our house in the evening.  We had friends over for dinner and dessert and while eating ice cream my friend took some of her whipped cream and placed it on Julia's nose.  Not liking whipped cream, Julia got very upset and felt offended.  She immediately ran into the living room, buried herself under a pillow, and bawled her eyes out.  Ryan turned to my friend and said, "That was not very nice to do to my sister!"  After settling Julia down, we all got a good laugh out of both kids, and to make ammends, my friend wore whipped cream on her nose for the remainder of the evening!  It's a good thing these particular friends have been around our kids enough to know their personalities and I hope they didn't feel offended :-)

The other incident took place at the Danbury Fair Mall.  Ryan and Julia had spent most of the morning and afternoon with another friend of mine so that Phil and I could attend Dr. Cowan's appointment.  Let me preface all of this by saying my friend shared that the kids were excellently behaved all day and were super nice to each other.   I guess it is only around Phil and I that they are wild and spiteful with each other!  Anyways, I met all of them at the mall and after a ride on the carousel the kids played in the playground section.  At one point I heard Julia tell Ryan that a little boy was hitting her hand.  Now I didn't see this little boy hit her but I watched as Ryan asked her which boy and Julia pointed him out.  This kid couldn't have been more than 18 months old.  But Ryan marched over to him and pointed in his face and said, "You don't slap my sister."  I immediately ran in the area and pulled Ryan away from this kid and told Ryan that he was just a baby and didn't realize what he was doing.  About two minutes later, sure enough, this little kid went up to Julia and slapped her hand.  For fear that Ryan would eventually see this kid slap his sister and then proceed to knock him in the jaw, I decided it was time to leave!  Now if I could just get Ryan to stop hitting Julia himself, we'll be golden!

The kids' new school invited us to their annual family day picnic.  Julia met her new pre K teachers and we met Ryan's teacher that he will be with after he returns from his half day kindergarten program (Ryan ran right over to the bouncy house and slip and slide and showed no interest in meeting school teachers!)

 And as if we didn't have a busy enough week, we squeezed in a day trip up to The Berkshires to a place called Jacob's Pillow.  We attended a dance performance in which one of my former students was part of.  It was a great show, but Ryan wasn't half as interested as Julia was.  But afterwards I did catch Ryan doing a little dancing of his own!

 DC