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

Week 157

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

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

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

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

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

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

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

DC

Week 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

4/2/13 World Autism Awareness Day

In 2007, the United Nations declared April 2nd as World Autism Awareness Day.  People around the globe celebrate this day with hosting fundraising events, lighting their homes using blue lights, and wearing blue clothing, to name a few.  Approximately 7000 landmarks and buildings will shine blue lights onto their facades.  I wonder how many people will see the top of the Empire State Building shining blue tonight and know what it is for or possibly just assume it is in honor of our New York baseball teams for the start of a new season.

My own immediate and extended family wore blue and our blue light bulbs are in ready to be flicked on.  I asked my students to wear blue today and about 70 of them did.  We didn't do any fundraising (we save that for May near my son's birthday), but we certainly covered the awareness part.

And how about the celebration?  April 2nd is also supposed to be a day to celebrate Autism and the uniqueness it brings to individuals and their families. We are blessed to have a family that supports us and "celebrates" my son everyday.  Through our ups and downs there is ALWAYS someone there.  For the families without the support that we are so lucky to have, the awareness and celebrations are so important to show them that someone cares so that they don't lose hope.  Losing hope is easy to do when you are frustrated and losing control.  Well, someone is listening.  Someone is doing something.  People do care and want to help.

When my son, Ryan, was diagnosed with Autism three years ago, my brother asked me, "Autism, what is that?"  My family was unfamiliar with the diagnosis and we had a lot to learn.  This morning my brother sent me pictures of Radio City Music Hall.  He was given permission to light the inside blue and the entire theater shone blue all day.  RCMH has participated in World Autism Awareness Day in the past by shining blue lights outside, but this is the first year for their famous indoor ceiling to be lit blue. What a great thing to do in honor of not just my Ryan, but for all of those with Autism, whom we celebrate today and everyday!

DC

This entry of the blog was featured on a friend's blog.  Check out her website: http://beyondthecrib.com/ and the link she posted after asking me to be a guest blogger on her site: http://beyondthecrib.com/content/guest-post-world-autism-awareness-day

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 152- The Neuropsychologist

It was an up and down week with Ryan.  On Friday, Ryan was very excited to come home and show us his 100 on his spelling quiz.  Now that he is being pulled out again with the special education teacher his grades have gone up.  If you recall, they stopped taking him out of the class to take his tests and we noticed a sharp drop in his grades.

On the behavior front, it was OK.  His behavior was manageable at home and he did not have as many of the huge meltdowns that he was previously having.  However, on Thursday we found out that Ryan had punched two different boys in the face at two different times throughout the school day.  The first one was because Ryan and another boy had an argument in the hallway.  The argument was about if the other boy said a bad word or not.  They argued back and forth and Ryan hit him in the face.  The second time was in the cafeteria and a different boy took money from Ryan (his lucky coin) and would not give it back.  So instead of telling a teacher, he hit the boy in the face.  We are trying to get through to Ryan that you cannot break a rule to enforce another rule.

With all of the phones calls that Dawn has been making to different doctors, we were supposed to have our first one on Friday afternoon with the psychologist that Ryan's school social worker recommended.  We prepped Ryan, sent notes into school about getting out early, we put in to get the time off from work to bring him and what happens?  She cancels at the last minute!  I wonder it we should charge her the 75 dollar fee for not cancelling within 24 hours?  It was probably for the best anyway.  Dawn did not get the best feeling from this person during their phone conversation and it took forever for this person to call us back to get this appointment in the first place.  And even after hearing the urgency of the situation, the earliest she could fit us in was two weeks away.  We found a different psychologist (Dr. Field) that was recommended to us by one of Dawn's former student's mother.  Dawn called him and was able to get an appointment within 2 days.  Ryan met him on Saturday, had a good time in his office and when the session was over gave him a hug good bye.  We are going to stay with Dr. Field for now and Ryan is going to see him once a week. Dr. Field gave Ryan some interesting homework.  He told him that once a day he is to have a planned meltdown and to make it as close to a real meltdown as possible. Ryan did so on Saturday and Sunday (with reminders and prompting from us).  He found it very silly.  Maybe that is the point, to make Ryan realize how silly he looks and feels spinning on the floor kicking his legs. 

Another one of Dawn's former student's mother who reads our blog thought it would be nice to make us dinner. This is someone who has followed Ryan's ups and downs for years and has become a close friend to our family.  Below is the picture of what she made for us that evening and the menu that she made.  We are still eating the leftovers!  This is someone that has really reached out to us and has been a good friend to Dawn.  I cannot thank her enough for all of the support and encouragement that you have given to Dawn over these past few months.  It has meant a great deal to our family.

Our feast.

The Menu

We are in the process of filling out paperwork for OPWDD (Office for People With Developmental Disabilities).  Dawn has been making calls to our regional office and with a great deal of help from several friends on Facebook, we are on our way.  It is mountains of paper work and we have been extremely fortunate to have people willing to email us and spend over an hour on the phone walking us through the system.  For those of you that have reached out to answer our questions or to just say that you were thinking of us, we cannot thank you enough.  We will keep everyone posted on whether Ryan qualifies for services.  It may take a while to get the paperwork submitted since we have to wait for updated doctor's notes as well as new behavior form results that the school needs to complete and process.  Dawn is trying to devote time each day to work on all of this, but being back at work has made it difficult to have a free moment to do so.


Another reader of the blog, (another mother of one of Dawn's former students) sent Dawn several messages of encouragement.  Here is part of one of the messages:

"...was at a a training at work the other evening and the agenda was on a documentary "Different is the New Normal." It was about a young boy who lived with Tourettes and the struggles not only he went through but his entire family. It was a very long journey....very difficult at times but in the end he developed into an amazing young man. At the end of the documentary his Mom explained how if she could just have been able to know from when he was little what an amazing young man he would grow up to be, it would have been so much easier for her. As parents it is our fear of the unknown that panics us. Keep your faith. It will get you through."

So true!  We constantly worry about Ryan's future, and it is the fear of the unknown that panics us, but also keeps us working hard to help him.


Since today is St. Patrick's Day, here is a picture of Jack all dressed in green.

Jack's First St. Patrick's Day!

Ryan has his first appointment with the psychiatrist on Tuesday.  We're hoping that the upcoming storm does not change these plans. 

Happy St. Patrick's Day!


PC

Week 151

I want to begin by saying "Thank you!" to everyone for helping us through this past week.  The prayers, the emails, the phone calls, the texts, the hugs at work, and the offers of help, are all much appreciated.  With help, we were able to secure an intake appointment for Ryan with a therapist this Friday and another appointment with a psychiatrist next week.  We're still making calls and waiting for return calls from other doctors that were recommended to us.  This journey is far from over so we are keeping all of our options open. 

It was an overwhelming week trying to make and take phone calls with the few free moments I have during the school day.  We kept in close contact with Ryan's teachers and social worker at school.  The staff in his school has been very supportive.  With their help we were able to modify his IEP for him to get 8 individual counseling sessions between now and the end of June, and modify his homework.  For the most part we were able to get Ryan to complete most of his homework this week.  I think that is the time of the day that Ryan (and us) need the most help.  For anyone it can be overwhelming to come home from a long day at work and have to deal with making dinner and completing an evening routine of homework, bath, and bedtime.  Ryan's opposition to doing these things, and his constant bickering with us and Julia, is beyond frustrating and exhausting for us.  And I'm sure it is even more frustrating and exhausting for Ryan.  He is awake by 6am, out of the house by 6:30 am, at daycare for 2 hours, and at school for another 7 hours. He is expected to hold it together all day, while performing tasks that he finds "boring" and difficult.  Then he comes home, and we expect him to continue to do tasks that he finds "boring" and difficult.  As the work becomes more challenging and demanding, I fear Ryan will continue to struggle.  And this is not the same Ryan; there is something different about him these past few weeks.

One of my administrators at work offered to help me complete paperwork for assistance with Ryan during his hours at home.  He is the special education administrator in our building and knows a lot about this kind of stuff; he said there is a homework program out there where college kids come to work on homework with children with Autism.  I didn't even realize there was such a program.

As I mentioned before, this journey is far from over.  There is a lot of work to be done, and issues to be addressed.  There is a lot for us to learn, and resources for us to uncover.  There are questions upon questions to be asked, and I pray that there are answers waiting for us.

There were a lot of struggles with Ryan this week, but there were also some silly and fun moments.

Getting ready for St. Patrick's Day!

Having fun with our glasses from nonna.

Ryan focusing on putting together his project from our neighbor, Carol.

Ryan's St. Patrick's Day gels from Carol.  He hasn't lined things up like this in a long time.  He usually places them randomly on the window.  Why is he categorizing them and lining them up all of a sudden?

Happy Jack.  Unfortunately Jack is sick again.  He has a terrible cough and runny nose, but he is still smiling!

DC

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