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 153

We began the week excited to have Ryan's appointment with the psychiatrist.  Unfortunately, the morning of the appointment, the receptionist called to cancel the appointment.  It was the morning following the snow/ice storm.  Many schools were on a 2 hour delay.  I was home with the kids, about to pack them into the car to take them to daycare so that I could head to work and the phone rang.  I was so annoyed.  I told the receptionist that the roads were fine and the buses were already out there picking up the high school kids in my neighborhood.  How could the doctor cancel an appointment for the afternoon when she had 5 hours to make her way into the office?  They told me to call back and reschedule.  Yeah right!  So with the psychiatrist appointment cancelled, and the psychologist appointment cancelled just a few days before that, we were feeling pretty defeated.  In the meantime, a family friend had recommended another doctor in Newburgh who comes highly recommended.  He is on vacation but said that he would be willing to meet with Ryan when he returns.  I've left a message and am hoping to hear back very soon.


Among the many recommendations we received, one was for the Autism Program at Yale.  They have a Child Study Center that is considered one of the best in the country, where over a two day period a team of specialists interview us and work with Ryan to determine his strengths and weaknesses.  At the end of the two days we are provided with a pile of reports that we can use to help Ryan get the help he needs in school and within our community.  I spent time researching the program this week and speaking with an individual from the Yale Child Study Office.  We were able to make an appointment for Ryan during the first week in April.  But after further consideration, Phil and I cancelled the appointment.  With all of the other avenues we are pursuing right now, we didn't want to jump into this and overwhelm Ryan.  It is a lot of money, out-of-pocket, to spend ($5500) for reports similar to what we may already receive from the professionals currently working with Ryan.  I'm sure it is the name "Yale" at the top of the reports that may open a few more doors, but at the moment we seem to already be inundated with information.  It is not the lack of information, it is "What do we do now with this information?" that has us stumped.  The Yale program is something that we can wait a few months for and see if it is necessary at that time.  This will give us more time to save up the $5500 since much of our current resources we are currently investing in appointments in the psychiatric field.  It is astonishing how many doctors in this field do not participate in insurance! 


Autism Program at Yale

Jack turned 8 months this week.  Here is a picture of Jack with Ryan and Julia.

Towards the end of the week Ryan had a huge meltdown that lasted about 20 minutes.  My parents and brother were here.  They said he was great all day and then something set him off and he couldn't control himself.  It happened just as I had returned home from work on Friday.  It was already a bad day as I had met with the Assistant Superintendent in the morning and found out that I was one of 67 teachers in my District being laid off.  As of right now I do not have a position for the 2013-2014 school year.  That may change depending upon the budget in May, but there are a lot of factors in play right now.  I can't believe after working for a district for 10 years that there have been so many cuts that I am at the bottom of the list on the chopping block.  How do you continue to run a decent education program with that many layoffs? After a rough day at work, walking in the door to Ryan crying and screaming and throwing his body around was just a lot to handle. 

And Ryan's skin is getting progressively worse.  He is obsessed with scratching it and he is so itchy it is further upsetting him.  We took him to the pediatrician and she gave us two topical prescription medications; she said his eczema and his scratching, has caused an infection on the skin.  After just one day of use we already noticed a difference and Ryan said himself that he is less itchy.  Here is a picture of his scaly, scabby leg the night before we took him to the pediatrician.

On Palm Sunday we did a little early celebration of Easter with our families.  The kids had an Easter egg hunt outside and had a lot of fun playing all together.

Don't forget that April 2nd is World Autism Awareness Day and homes and buildings around the world will be lighting it up blue. Get those light bulbs ready! Our light bulbs are ready to go for the evening of 4/1!  And please remember to wear blue on 4/2! 

DC

Week 66

The kids being silly...

 

After weeks of watching Julia jump in the pool Ryan finally did it on his own.  He wouldn't jump in unless I was in the pool and holding his hand while he jumped from the edge.  For a while he did this and got a big kick out of my parents on the sidelines clapping for him.  But then they said they weren't going to clap anymore unless he did it all by himself without holding on to my hand.  Well he was so excited to have people clap for him that he did it on his own!  Here is a video of one of his solo jumps... (and he clapped for himself!)

 

With all of this swim time he's had this summer, Ryan's skin is super hydrated.  It is sooooo soft!  It hasn't been this smooth and soft since he was a little baby.  

And nonna's and papa's house is not just about the pool.  Here are some other activities the kids enjoyed...

Who needs to walk to go pick up the mail when you can hitch a ride in the wagon on papa's lawn mower?

Couldn't resist... their faces are just priceless in this shot!

Julia looks as happy as can be but Ryan looks a little unsure of Julia driving all by herself!

A true backseat driver.

 
In this video, papa wants her to turn left and she goes the wrong way.  Ryan is not very forgiving of her mistake... but it is still so cute (and funny) to watch!

Ryan quickly got the hang of the slip and slide.

He even tried it face first which was a pleasant surprise since he doesn't like to get his face wet.

On the food front, I baked from scratch GFCF egg free cupcakes for Ryan because we ran out of our supply in the freezer.  I modified a recipe I sometimes use and they came out great.  You can't even tell they aren't regular chocolate cupcakes.  They were so moist, which is a difficult feat to master when baking GF dessert items, especially without using eggs.  The trick was using Vegan mayonnaise.

This weekend we visited our friends Angela and Michael in their new home in Brooklyn.  On the way down the kids were looking through the mail in the backseat. Ryan was reading through a grocery store flyer and he found the bakery section.  He proudly announced that they had a cake for $7 but it isn't "gluten free Ryan cake"!  We got a good chuckle with that one.  Ryan was very excited to play video games and watch Michael play Mario Brothers on the Wii.  Below are some pictures and a video. 

Attached at the hip, and sitting the same way!

Notice Ryan's left hand holding on to Michael!

In front of the "Welcome Ryan & Julia" sign on the door.

As you can see, Ryan became very attached to Michael as he always does when we get together with them.  And Julia clung to Angela.  Several times on the ride home the kids said they were going to miss Angela and Michael, and Ryan said, "I miss my friend."

I brought him up to bed a few minutes ago and Ryan says to me, "Tomorrow after camp I want to go to someone's house."  When I asked him whose house he replied, "Someone that has glasses and someone that doesn't have glasses, Michael and Angie."  What an observant sweetie!

DC

Week 55 - Happy Mother's Day!

What it means to me to be Ryan's mommy...

-Never knowing what mood I will find Ryan in, but always knowing that I can eventually get him to smile.  And what a smile it is!

-Constantly worrying!  Worrying about his well being, worrying if I'm doing everything I can for him, worrying about his future.

-Tired and busy, yet grateful he's in my life.

-Happy and blessed to feel his love.

Mother's Day Tea at Noah's Ark where I was given handmade gifts and homemade treats!

And Ryan came home from PARC with a card with the following statements answered by him. 

My mom's name is: mom
She is special because: she makes me dinner
I like when my mom: tickles my nose
My mom can do many things!  I think she's best at... her paperwork
My mom is really funny!  She always makes me laugh by...making her funny faces
My mom is as pretty as a... mom
My mom is smart!  She even knows... how to talk on the phone
I'd like to tell my mom...I love her!

Some I got such a good chuckle about and I really enjoyed reading it!  But do you want to know what my best gift was?

Remember this picture taken in March?

Taken May 8, 2011 - The BEST Mother's Day gift ever!

I don't think it is one particular thing that has caused this improvement in his skin but rather a combination of things.  For one, Ryan has been taking showers rather than baths lately.  And afterwards we continue coat his legs with the almond oil.  And during the past week we've been using the new supplement called Glutomine Plus Powder that we mentioned in last week's blog, and have not been giving him his B12 injections.  We're happy to see the improvement and feel the improvement... his skin is so much softer!

Ryan had a pretty bad ear infection this week and needs ear drops twice a day for a week.  His tube is still in his left ear where the infection occurred and if it doesn't fall out soon we'll need to have it surgically removed.  He goes back to the ENT in June for another checkup. 

We had a great Mother's Day in the Campbell family!  Here's a picture of one of my gifts... a blue heart glass necklace with sparkled pieces inside of the glass in the shape of puzzle pieces.  It is part of a collection by a jeweler who donates part of the proceeds towards the fight against Autism.

My other gift I am using to type this blog... a new laptop, my very first laptop!  Much needed and appreciated!

Our moms also enjoyed their gifts and spending time with the kids today.

Getting bored of the same old posts each week?  Getting tired of hearing our side of the story?  Well...

We have some special posts coming up this week in honor of Ryan's 5th birthday.  Be sure to check back each day!  And for those of you who own a Ryan Express shirt, please wear it on Thursday, May 12th for Ryan's big day!

DC

Week 51

This weekend Ryan attended my school's musical production of Beauty and the Beast.  He remained attentive during the show and enjoyed it.  He said that his favorite part was when the beast was fighting with the prince (Gaston) and when Belle and the Beast danced.  He seemed overwhelmed before and after the show while in the auditorium with so many people.  I tried introducing him to a few people but he wouldn't speak with anyone and would barely make eye contact.

Ryan's behavior at school this week was fairly good after a rough start on Monday.  His teacher called Phil in the afternoon to tell them about an incident at school.  Ryan was having a tough time listening and following directions for a good part of the day.  And then during afternoon snack Ryan was shoving several pretzels at a time into his mouth.  When his teacher asked him to stop he told her that she can't tell him how to eat and he was going to call the police on her and they would bring her to jail.  Needless to say we had a lengthy conversation with Ryan that evening.  I warned Ryan that he wouldn't be getting the Sodor Suspension Bridge for his birthday if he doesn't get good reports at school.  Ryan has been talking about this particular bridge for many months now and he would love to add it to his Thomas the Train collection.  My brother agreed to purchase it for him for his birthday and Ryan promised him that he would get good reports at school.  Ryan and I spoke about what he will need to do to make sure he gets a good report each day.  I was pleasantly surprised to hear Ryan come up with the following rules: Speak nicely to teachers.  Play nicely with friends.  Eat one pretzel at a time.  No cheating during games.  I asked Ryan to add "Help clean up" to the list.  While impressed that Ryan was able to recognize and communicate with us about appropriate behavior, displaying that appropriate behavior on a consistent basis is another story. 


Ryan can also display a funny side.  I want to share this exchange I recently had with him...


Ryan takes fake money out of his wallet, shows it to me, and starts the following conversation...
Ryan: I have $50.
Me: Where did you get $50 from?
Ryan: The $50 store!

On another note, Ryan's skin has settled down a bit.  It isn't as red and rashy as it has been recently, but it is still rough rather than smooth.  We were given a suggestion to try something on his skin called Almond Oil.  Phil purchased it this weekend at Nature's Pantry and we are going to try it on a small part of his body after this evening's bath.  

It's been nice dealing with Ryan's hair all week now that he has had a haircut.  It is more manageable and he liked the attention he received all week about his new haircut and his visit to the barber shop.

Save the date... Sunday, June 5th is the Autism Speaks walk.  We will be officially signing up our team online this week and we will share the link so that people can join the team or make a donation.  


Have a good week everyone!


DC

Week 50

On Friday, April 1st we changed our white lightbulbs at our front door to blue. 

Phil was able to purchase blue light bulbs that actually came in an Autism Speaks Light it Up Blue package. I had never seen these before.

As the night of the Light It Up Blue campaign approached, I saw a commercial sponsored by Autism Speaks.  It's a public service announcement about Autism hitting closer and closer to home.  Here's the link:
Public Service Announcement

While prominent building across the world participated in this campaign, I am sad to report that the White House was not one of them.  Please read this letter below written by a mom of an autistic child.  It is well written and it triggered people from all over to gather on Pennsylvania Avenue with signs, but to no avail. 
Letter to the President

Ryan received good reports most of the week.  He was excited for us to read his report in his notebook on the good days and that would be the first thing he mentioned to us when we picked him up from Noah's Ark.  On the bad days, he ignored the subject altogether.  We experienced some of his rough behavior towards the end of the week and the weekend.  He became stubborn several times and did a lot of arguing with us and Julia.  But he also had some good moments and was loving with Julia and his cousin, Amelia. 

To get an idea of how big Ryan actually is, Amelia, in the center, is almost 2 years older than Ryan.

My brother made Ryan a deal that if he continues to get good reports he will buy him the Sodor Suspension Bridge for his Thomas the Train set for his birthday.  Ryan has been talking about this particular bridge for months.  They shook on it.  Of course just minutes later Ryan had a meltdown, followed by several other meltdowns throughout the night.  But several times throughout the weekend Ryan talked to us about getting good reports so that Uncle T buys him the Sodor "extension" bridge.  One time we caught him on video:

Ryan and Julia were in an advertisement in the Mahopac News newspaper, March 24th edition.  If you have the paper, the ad for Noah's Ark is on page 29.  Here is a link to the ad:  Ryan and Julia are in the newspaper!
Ryan's skin has been having a severe rough spot ever since we returned from California.  We stopped all powder supplements to see if we can get his smooth skin back.  Most of the redness and puffiness has subsided, but the skin is still rough like sandpaper.  Here's a picture of his legs back in the beginning of the week:

We are at a loss and feel so bad that we can't fix this for him.  It is especially upsetting when we have to use an alcohol wipe to clean an area for his injection every other night.  It burns him and he begs us to blow on his skin while we wipe it.  There are sections of this "rash" on the front of his legs, back, stomach, and arms, but those sections are not as severe as the back of his legs and bum-bum.  Ryan has been experiencing skin issues like this for years now and while the changes in his diet and medicines reverse the rash for a little while, it never lasts for more than a few weeks.  I'm beginning to think that this is his chemical make up and it will be something we (and he) will always have to deal with. 
On the food front, I made Ryan a GFCF egg free lasagna.  The noodles are made by Orgran and were quite tasty.  Ryan was off and on about eating it.  I don't think it was the noodles as much as the Soy Mozzarella Cheese that I used that turned him off a bit.  I think he is not used to eating cheese that he dislikes the texture.  Here are some pictures of the tray after I put it together, once it came out of the oven, and Ryan trying it.

As for the new pizza place we tried out, there was no mistaking that Ryan enjoyed their Gluten Free pizza!  I did not put the soy cheese on it, but instead asked the pizzeria to make it with pepperoni on top, one of Ryan's favorites!  We tried out a new place in Fishkill called J&J's Pizza Town.  It is located near Nature's Pantry on Route 52, which we go to often, so it is convenient.  They made a personal size pizza and Ryan ate most of it in one sitting!  Looks yummy, doesn't it?

We heard back from a few people about joining us for the Autism Speaks walk on June 5th.  Please let us know if you are interested.  And I need to get on the ball about ordering some more shirts so that I have them in time for Ryan's birthday.  For the 100 or so people who bought shirts last year, please mark your calendar to wear it on May 12th, Ryan's birthday.  If you are in need of a new shirt or want to order one for the first time, please let us know.  They are $10 and proceeds go towards supporting children with Autism.  I can order a variety of adult and children sizes.  Here's a picture of the Ryan Express team shirt:

On a positive note, Ryan has been great about his B12 injections.  In fact, about 2 weeks ago I gave it to him without first putting the numbing cream on, and he handled it exactly as if the cream had been there.  Not using the cream makes the process much easier since we don't have to put on the cream and wait an hour to give him the injection.  Cutting out that step has cut out the stress involved with timing everything.  So we are happy to report that we have been skipping that step and Ryan is doing a great job. 

And to end on a super positive note, Ryan received his first haircut at a salon today!  For four years he has only let me or my mom cut his hair, and even then it had to be under certain conditions and only when he agreed to it.  And until recently he wouldn't let us use a buzzer near his head.  So going to the salon and letting them use not just the big buzzer, but also the little noisy buzzer, is quite the accomplishment!  Here are some pictures of his experience. 

Before

Manages to squeeze out a smile; he was being so brave!

Not smiling!  He did not like when she sprayed him with the water bottle.  But he remained calm and didn't say a word.



Tolerating the small noisy buzzer to go around the edges.

After

First words out of his mouth when we got in the car:  "I want to go home and show Helen." (Helen is our cat.)
DC

Week 38

I made a GFCF egg free pizza today.  This was my second attempt at doing this from scratch and this time it came out much better than last time.  I think over the months I've certainly improved my GFCF cooking techniques.  I'm usually an impatient baker but you really need to slow down when cooking GFCF items and follow the directions carefully.  There aren't many shortcuts you can take.  If an ingredient works better if it is at room temperature, then you need to be patient, and plan far enough ahead, to make sure it is at room temperature.  Here is the pizza cooking in the oven.  It smelled yummy and Ryan was very excited!

Here's a video of Ryan eating the pizza; he ate two slices!

And here's one of Julia too.  She liked it until she found a piece of basil in the sauce and flipped out!

Ryan's skin continues to get smoother each day.  On most days we give him the oils in the morning and the evening.  I shouldn't really say "we" since Phil is usually the one who takes care of the oils.  Phil has also been the one to give Ryan his injections lately.  We've had a bit of a setback in the injection department.  Ryan now gets himself all worked up like he used to, and the process usually takes about 15-20 minutes because he stalls and makes excuses, and changes seats and positions a dozen times before we firmly tell him this is it or we're holding him down.  I'm not sure why the sudden change back to what it was since he was doing so well.  But now whether it's me giving the injections, or Phil, Ryan tries his best to avoid them.

A funny little story to share... Ryan looking in the mirror says: "Mom, I'm getting big.  Soon I'm gonna go to college."  (For those of you familiar with it, I think he's been watching Toy Story 3 a bit too much!)  Speaking of Toy Story 3, we had a visit from Angela and Michael this weekend and the kids had a ball playing with their Toy Story characters with them.

We had a snow day on Friday.  Here are some pictures of the kids (and Phil) frolicking in the snow on Saturday.

The faster, the better!

Looks like Ryan took a snowball in the face, but this was him trying to throw the snowball at Phil.

Getting ready to surprise Julia with a snowball!

Attempting to make a snowman. 

Poor daddy got his workout today!

And don't worry, I got plenty of action with the kids this week too.  Here's a shot of Ryan and I snuggling on the couch.  He's pretending to be Frosty with a fake pipe in his mouth!

DC

Day 44

Ryan's first overnight trip since we started the diet. We are up at my mom's house for the night. They were prepared with several items that Ryan can eat, and everything is working out fine so far. We made sure we packed all of his supplements, and Ryan took them with no problem this evening. He had several onlookers who clapped for him and he was proud!

Ryan's skin has improved greatly. Dr. Bock said that we need to "lubricate his body from the inside out". That is what the fatty acids and fish oils are doing. His skin is almost as soft and smooth as it was when he was a baby. He scratches a lot less than he used to, and his cheeks are red and blotchy on occassion rather than daily. We've noticed a lot of the same changes with Julia, who has dry skin issues as well. Once she realized how much attention Ryan gets during "supplement time" she started demanding medicine and vitamins. We give her omega-3 vitamins in the form of a gummy bear and she loves them. She is proud of her softer skin and when I ask her why her skin is so smooth she says because she takes her vitamins.

It was nice this weekend to see family that we don't get to see too often. They had nice things to say about Ryan's progress and because they haven't seen him in a while they noticed a big change. I saw the progress a lot in the beginning and now it seems as if things have hit a plateau. It is easy to forget how awful things used to get at times and I question if they were really all that bad or if it was "in our heads". When I hear a family member comment on how much he has changed it validates what we are doing and what we have done. I guess I have to get used to the fact that this "new" behavior is going to hopefully be the "norm".

DC