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 103 - Happy Easter

Working on the crafts our neighbor Carol brought over!

Ryan's finished products; he was so creative and patient!

Ryan's tooth is growing in, slowly but surely

Making dough with Grandma Millie... homemade raviolis!

Coloring Easter eggs

Planting seeds for watermelons and cucumbers

Ryan making his GFCF pepperoni pizza

Making pizza for the grandmothers

Ryan wearing his pirate hat Grandma Jeanne brought from Disney World

Fishing

Having fun on papa's swing

Easter morning

Ryan's GFCF Easter cake

 

Waiting for their new playmate to arrive!

Besties!

Easter egg hunt

Just as we were finishing our outdoor egg hunt, my dad's friend stopped by with a little boy, similar to Ryan's age, and Autistic as well.  Ryan did not hesitate one minute when I asked him to take some of his eggs out of his bucket and rehide them for the other boy to find.  Ryan even ran around with him encouraging him to look in different places to find the eggs he had hidden.  All four kids eventually started taking their own eggs, hiding them for this little boy, but it seemed like Ryan was the first to understand what the adults were trying to quickly do and he set a trend of acceptance with the rest of the kids.  It brought tears to my eyes to watch as these children, ages 4 to 7, gave up their prizes to make another child happy.  I was one proud mom and aunt!

DC

Week 54 - Happy Easter

I want to start off with a funny story... Ryan is obsessed with playing games on Phil's Ipad.  So obsessed that we've had to hide it from him some days and tell him that Phil left it at work.  Well the other day Ryan wanted to play with it and the following conversation occurred:

Ryan: Mommy, I want to play with something.

Me: What do you want to play with? 

Ryan: It starts with a "D".

Me (puzzled because I really thought he was trying to butter me up to play with the Ipad): A "D"? Do you want to play with your doggie? Do you want to dance?

Ryan: No, it's something else.

Me: Well what is it?  I don't know what else starts with a "D".

Ryan: You know mom, "DaIpad".

I had such a laugh! I gave up trying to explain to him that it is "an Ipad" or "THE Ipad" not all one word scrunched together as "DaIpad".  Of course I just had to let him play after that! 


So this video taken Easter morning is mostly about Julia, but I just had to share it.  If you've seen the movie "Hop" you may recognize where Julia is getting her words from!  Kids... so innocent, funny, (and gullible!)

Some pictures of the kids celebrating Easter...

Opening Easter gifts from our neighbor, Carol.

Ryan happy to see that the Easter Bunny left him a new spring coat and his favorite Angry Bird!

The kids with papa

Easter egg hunt

All 60 plastic eggs retrieved.  A job well done!

Ryan spent about 20 minutes practicing his numbers!  We were surprised, yet pleased, with his focus and willingness.

  

This last picture reminds me of a video I watched this week.  Check out this clip about how a little cholesterol helped a little girl with autism.  Thanks to Jess and Kerry for bringing it to our attention.  Can a little cholesterol help?

On the food front, Ryan has been so good about trying out new foods.  He ate raw onion on his sandwich (YUCK!).  That was all my dad's doing!  His breath stunk so bad the rest of the day!  This week he also tried different vegetables out of my salad, and he ate some corn.  We're starting to incorporate a new supplement called Glutomine Plus Powder.  It's primary focus is gastrointestinal support and we're hoping it will help him better digest food and possibly help with skin rashes.  I do have to say, even before we begin this new supplement, Ryan's skin seems to be on the mend.  For the most part his cheeks aren't red unless he's running around playing, his legs are still really rough but the scabs are almost gone, and he hasn't been scratching his skin as much.

 Lately Ryan has to be racing with Julia for EVERYTHING!  He is obsessed with winning and everything has to be a race.  Who is first upstairs, washing their hands, to the door, to turn the TV off, to the front door when the door bell rings, who gets their shoes on or off first, gets their pj's on, this is getting a bit much.  "Losing" one of these situations turns Ryan from a happy kid into a social mess.  It often takes a lot of TLC and coaxing just to get him back to a "happy place" so that we can continue on with the day.  I'm sure many of the parents out there are thinking, well kids are like that and these are age appropriate situations.  Yes, true, but the intensity and the frequency of these situations is not what we deem normal sibling rivalry.  In just one evening we can encounter dozens of these fighting matches and I find myself walking on eggshells, hoping not to say something to trigger an argument. 

I hope that they turn this competitiveness into something productive like first in school work or first in an athletic competition.  However, they really do not seem to want to be the first to clean up so we are not too hopeful!  Here's a video of something that started off fun and ended in the kids arguing.  Luckily Ryan was at the top of the slide or the situation most likely would have turned into a physical match with Phil and I prying them apart.  And I say "Phil and I" because Ryan has become too strong for me to restrain him when he's angry.  This kind of behavior has escalated over the past month and for the first time in a long time we're seeing Ryan's mood swings creep back up.

Today we had a birthday party for a set of seven year old twins, one boy and one girl.  It was at a place called game pad in Pawling, NY.  It was an arcade place in a strip mall and it was packed!  The moment we walked in I thought we were going to have a problem with the amount of noise and people in the place.  However, he did fantastic.  He tried almost every game and really like a game where you rode a motorcycle in a video race.  He pretended that he was a green motorcycle when we left and were in the parking lot.   He had no issue when it came time for cake.  We brought a few of his cupcakes with us and he was content to have just one with everyone else.  He was even fine with Julia eating her cake in the car on the ride home.  When it comes to birthday parties, he has come such a long way.

Ryan had fun playing outdoors this weekend.

Fun with cousins!

Time with Amelia!

Ryan really does like to wear these pajamas!!!

DC

Week 53

Spring Break Week!  Lots to share, so here it goes...

Let's start off with a video of Ryan and Julia dancing on a rainy spring break day.  While Ryan provides a good chuckle as he barks to "Who Let the Dogs Out?", it is difficult to ignore Julia's dance moves!

Phil's mom came over for lunch this week and we showed her the videos of the kids dancing.  They then felt the need to get back into their "dancing costumes" to show grandma.  Here's a picture of the kids being silly with grandma.

For over a month the boxes from Geneva Diagnostics Labs have been sitting in our dining room.  It is time for Ryan to get more blood work done before his next appointment with Dr. Bock in May.  We waited until this week because we're all home from school and it is the best opportunity to get him to St. Francis Hospital first thing in the morning to get the blood drawn.  He has to fast for 12 hours beforehand so Phil got him up early on Wednesday morning and drove him over to the hospital.  And of course insurance doesn't cover any of these tests.

 I get a knot in my stomach every time I look at those boxes.  I am so thankful that Phil took him because I was a wreck thinking about it and I know it would have been difficult for me to take him and put him through that.  And if he needed to be restrained he has become too strong for me to do it.  The doctor ordered level checks for certain things but not everything like last time but they still needed to draw about 15 vials of blood.  It was overwhelming to go through the boxes to complete the paperwork and prep the ice packs and vials, but the worst part was thinking of Ryan going through it.  Ryan and Phil were gone for over 2 hours.  Ryan needed to be restrained a bit and they were just able to get through the last vial before they needed to stop because Ryan was starting to turn pale.  That is a lot of blood for a little kid in one sitting!  Thank goodness he doesn't need to go back and they got it all done.  I made him a special pancake and bacon breakfast for him upon his return.  I was so proud of him!

Ryan showing me his boo boo.

Here is a video of Ryan eating his special breakfast:

We've established our team, The Ryan Express, for the Autism Speaks Walk in June. We hope to get a great turn out of walkers like last year.  The walk takes place on Sunday, June 5th at the New York-Presbyterian Hospital in White Plains.  Registration begins at 9am and the walk begins at 11am.   Please click this link to join our team.  The Ryan Express Team Page.  And don't forget to let me know if you need a t-shirt!

After our recent posted picture of Ryan's skin I heard from a colleague at work about a product called almond oil.  She suggested we try it and we purchased it at Nature's Pantry that week.  We've been rubbing it on Ryan's legs every other night after his bath.  His skin is noticeably smoother.  The rash still remains but it seems more contained and it is a different kind of rash.  It is not so puffy; it's more like red scabs and pimples. He still scratches which is causing the scabs, but I'm going to increase the frequency of applying the oil and see if that helps.  We're hoping to post a new and improved picture within a couple of weeks!

Ryan's B-12 injections, aka "red medicine", is going fairly well.  He still stalls a bit, but we no longer need to put the cream on first, which saves a lot of time.  In order to get it done without too much stalling we play a game with him.  If I'm giving him the injection I secretly tell him that we have to go in the other room and do it quickly so we can surprise daddy.  He likes to surprise us and show us the used syringe, and we in turn get all excited and give him hugs.  He becomes very proud of his accomplishment.  I'll have to get it on video one day because it really is so cute!  But I did get a video one night of him talking about his red medicine and cream.

A note about Ryan's diet... he ate tuna fish and liked it!  With all of the negativity going around about the mercury in fish this isn't something we would feed him all of the time, but it was nice to be able to give him something different.  And I happened to have a GFCF and egg free condiment similar to mayonnaise, called Vegenaise, that I mixed with the tuna. 

This week we watched an HBO Documentary called A Mother's Courage: Talking back to Autism.  I had missed it the last time it was on in the fall but once I heard the date it was airing this spring we set our DVR to record it.  It was an amazing story and if you ever see it scheduled on HBO you should view it.  Or we saved it on our DVR, so come on over!  This documentary was touching, enlightening, and educational.  There are so many things I can share about it, but I won't and hope that you see it yourself one day!  I'll simply say that we feel so blessed that Ryan is able to communicate with us.  I highly recommend families with Autistic children watch this documentary.  Here's a sneak peak:  View the Trailer
Ironically, Phil came across a video this week about an Autistic girl named Carly and it reminds me of the above mentioned documentary.  This is a 9 minute video, but well worth watching the entire thing.  It is so inspiring for families with nonverbal children!  Carly's Voice

One night Ryan started talking to me about bringing in pennies in to school because Ms. Rose (one of his teachers at PARC) said they needed to fill the whole jar with pennies.  I vaguely remember reading about a collection for Japan in one of the newsletters and forgot to send Ryan in with some coins.  Here is Ryan talking about the collection.  The next day Ryan brought in a bag of coins to add to the jar at school.

We're off to search for some hidden plastic eggs.  We'll post some egg hunt pictures next week!  Happy Easter!
DC