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