Week 162- Happy Birthday Phil!

Happy Birthday to Phil!  I feel super lucky to have met such a wonderful man who supports me and the kids with everything we do.  We didn't have any spectacular plans for his special day (I'm not sure anything could have topped his surprise 40th bash last year) but we spent the weekend together upstate at my parents' house and it was somewhat relaxing.

An early birthday celebration for Phil.

Papa taught the kids how to play Poker.  They caught on quick, especially Ryan.  Julia lost interest after a little while, but Ryan became obsessed and loved the betting part the most.  There were times where he became agitated when he lost a hand, but for the most part, he had a lot of fun playing during the rainy weekend.

Out to dinner for daddy's birthday!

Ryan had a lot of ups and downs with his behavior this week.  He continues to have difficulty with his sudden change of emotions and outbursts, but during the hours he is on the Focalin there is certainly an improvement.  There is still a lot of tattling going on at school, and during the week his special education teacher wrote us an update that he cried during P.E. class after each relay race that he lost.  We meet again at the end of the week with the psychiatrist to discuss the medication, and Ryan also goes for his annual check up this week with the pediatrician.

This is the busy time of the year with school and Phil is out several nights this month and next for events at work.  I was fortunate enough to have some help last week from a friend who came to spend time with the kids and help me with the afternoon and evening routine.  All three kids enjoyed her company and Ryan was on his best behavior, except for some resistance with reading a book for his homework.  After she left I was thinking how helpful her presence was and it reminded me that we are still waiting to hear back from OPWDD to see if Ryan is eligible for respite services.

This Sunday, June 2nd, is the Autism Speaks Walk in White Plains.  We are walking as The Ryan Express team.  Registration begins at 9 am, Opening Ceremonies is at 10, and the walk begins at 11.  Please let us know if you are able to meet up and join us!

DC

Week 161

We ended last week with uncertainty about the new medicine, Focalin, that Ryan began.  But I guess it just took a couple of days for his body to adjust.  He had a great week at school and when Dr. Hahn returned our call he suggested we keep him on it and see how he finished out the week with it.  It really is like clockwork.  Approximately an hour after taking the medicine it kicks in, and about 7-8 hours later it wears off and Ryan is as wild and unpredictable as ever.  We're happy to hear about the progress Ryan is making during those 7-8 hours. 

Here are some excerpts we received in Ryan's communication notebook this week from his special education teacher:

"Ryan got right to work this morning on his morning work.  He was one of the first ones done.  His writing about whales was very well done.  He applied something I taught and reviewed with the class yesterday.  New medicine must be working!"

"Good focusing again today, but a lot of tattling."

"Good day.  Got right to work this morning again."

"Got right to work.  Does not talk with peers at the table, but does talk to me a lot.  Today's morning work was a bit challenging, but the great news is he didn't complain once.  He had a worksheet to add three numbers.  Second, he had to write about a new sea animal we have learned about.  He only could write two sentences.  I had another student give him a book to help him and he sat right down and started to read without complaining.  In the past, he would refuse to read and write more. So happy to see this change."

While it is great to hear these positive comments, it is difficult to come to terms with the fact that we have Ryan on two different medications.  For years we have tried just about every alternative from the GFCF diet, to special doctors, to supplements, to different therapies, all to avoid medication.  We always saw that as a last resort.  This medicine ordeal is certainly more of an art than a science and it may take a long time to find the perfect mix.  

This year's Autism Walk in Westchester is on Sunday, June 2nd, with registration beginning at 9 a.m. and the walk beginning about 11 a.m., at the NY-Presbyterian Hospital in White Plains.  If you can join us please let us know and we will give you more information.  

Here are some pictures from this week:

Ryan showing off his art work at the Art Festival.

Caught them watching TV together.  What a pleasant surprise!

Happy 10 months Jack!

DC

Week 160- Happy Birthday Ryan!

Happy Birthday Ryan!  It has been a very eventful seven years but we would not trade them for anything.  We love you so much and we are proud of you for all that you have accomplished and all that you will accomplish.  Our "baby Ryan" is growing up. 

Seven years old!

Getting too big to sit on Grandma's lap!  

Thrilled to finally get some cake!  

Mother's Day

I am constantly amazed at how committed Dawn is to this process.  If there is a doctor's appointment to be made, she somehow finds a way to get it weeks ahead of everyone else.   She is on top of Jack's appointments and what he needs at daycare, Julia's Irish step dancing competitions and soccer games, and Ryan's Religion homework and when there is a party in his classroom that we need to send in some GFCF cupcakes!  She is the person that holds us all together and without her we (me) would be a complete disaster!  How she finds time to develop amazing lessons for her students and all the other things that she needs to do for her job is a mystery.  Yet each day she gets up, and shows us all the love and grace of a person without a care in the world.  It is amazing and Ryan, Julia, and Jack are the luckiest children in the world having Dawn as their mom.  Happy Mother's Day beautiful!

All together with the best mom ever!  With some drool and ketchup stains!

Ryan Express shirts on Friday and pins

Mahopac Middle school showing their support!  

On Friday, Dawn received a call from the Assistant Principal telling us of another incident where Ryan broke a rule to enforce a rule.  During reading time, Ryan choked a student that was not following the rules, and then at lunch told the same boy to look under the table and then he kicked him in the face.  This is the fourth incident this year where Ryan has resorted to violence to enforce a rule in school.  We had an appointment with Dr. Hahn that afternoon and Ryan refused to talk about it.  He hid behind me the entire time and refused to talk to the doctor about it.  After this latest incident and the fact that we do not believe the other medicine is working, we decided to give Focalin a try.  This is similar to Ritilan.  Focalin (dexmethylphenidate) is used to treat ADHD.  The psychiatrist still wants us to keep giving the Fluoxetine to Ryan and we have an appointment with him at the end of the month to assess how things are going.

We gave Ryan the Focalin a try this weekend and he was zooming!  It is a time released drug and a few hours in, he was all over the place.  He was talking a mile a minute and went from one thing to the next.  We noticed that this was about 2 to 3 hours into the medicine and then he calmed down after an hour.  We assume that this is just his body getting used to the medicine and are hoping for the best as we give him this new medicine and send him to school tomorrow.  Dawn is emailing his teachers to give them the heads up in case he is all over the place again tomorrow.

PC

Week 159

Another crazy week for the Campbell house hold.  We always seem to be running from one activity to the next and never just spending a quiet weekend at home.  To give an example, this Saturday we had CCD in the morning, then Ryan had a soccer game, Ryan then had a doctors appointment with Dr. Field, followed by Julia's soccer game in the afternoon and then we were invited to go to two First Holy Communion parties.  By the time we got home it was late and the kids were so dirty, we could not wait until the next day for a bath.  So we had all three take a bath together!

All the in the tub!

Ryan playing soccer

Ryan on his way to scoring his first goal of the season!

Ryan came home this week and hung this sign outside his door for some privacy!  He must have seen this sign all over the school and figured it was a good sign to hang on his door.

Dawn's new Autism Bear!  

On the medicine front, we are not seeing any difference.  It has been three weeks and we are really not seeing a difference in his behavior.  Homework is still a daily struggle and his behavior goes from calm to crazed in a split second.  If he does not get his way on his time, then he gets very angry and mean.

Ryan is still having issues understanding socially acceptable behavior.  There were two specific instances this week that illustrates this perfectly.  The first instance was a card that his first grade class was supposed to make a card for a father who is stationed in Afghanistan.  His teachers were specific about what the students were supposed to write and what not to write.  What Ryan wrote was "I hope that you are not killed and I hope that you are alive."  Then drew a picture of a soldier next to an American flag shooting someone else.  This was exactly what his teachers told the class not to write or draw and sent the card home to us.  The second instance was making a get well card for a person that is very sick.  The instructions Dawn gave him was to make a get well card and showed Ryan Julia's card with rainbows and flowers.  He drew the person on an operating table, getting a needle shot, with several people around the table.  We do not think he was being mean, but he just does not understand what he did was inappropriate. 


Ryan express shirts - With all of the craziness we never got around to finding a new company to make the shirts and suddenly it was May!  We did however order pins and we will have more information shortly for anyone that is interested.



A good friend shared a link about a documentary that is being shown in Mahopac, NY.  If you are interested the number to call is listed below.

Heart Child: The Movie An Autism Documentary Film Screening Thursday, May 30 6:30 pm "Heart Child" is a documentary film about twenty-nine year old Crys Worley, who is the mother of a nine year old autistic child, Sasha.  It is a remarkable story about a mother's struggles, not only with her own health, but the well being of her son.  Committing to Sasha that she will never give up on him, and inspired by the challenges parents of autistic children face, Crys started a non-profit organization called A.Skate, Autism - Skating with Kids Through Acceptance, Therapy, and Education.  This film documents her extraordinary journey.    This screening is presented in cooperation with PARC, Putnam Independent Living Services, and the Mahopac Special Education PTO.  Special thanks to filmmakers Ben Duffy and Michael Sassano.    Registration is required.  Register for HEART CHILD, or call 845-628-2009 , ext 100.

Overall an OK week, but it is still a struggle with Ryan and his behavior.

PC