Week 166 - School's Out for Summer!

Summer is here!  Ryan finished up with a second year of perfect attendance.  Julia had perfect attendance this year too!

We were lucky to have my cousin here for a few days this week.  The kids stayed with her when school was not in session and it was a nice change in pace for them on their half days of school rather than going to day care.  Their fourth quarter report cards were as expected and we are very proud of what the two of them accomplished this year.

We finally got a letter back from OPWDD in response to our application.  It took over two months for them to review our paperwork and we now need to submit additional paperwork.  Ryan was denied services at this stage and everything is being sent to the second review committee.  We had his new psychologist and psychiatrist write letters of support and added them with the additional paperwork and reports that they were looking for.  We were told this step will take approximately two months as well.  Geesh!  We didn't ask for a lot of services; out of everything they provide we simply asked for someone to help Ryan with his schoolwork a day during the week.

His psychologist said that he is familiar with the process and it is typical for them to deny during the first round, especially for younger kids who may grow out of a lot of the symptoms they currently portray.  In his support letter he explained his assessment of Ryan and wrote, "As a past liaison between OMH (Hudson River Psychiatric Center) and the previously-termed OMRDD (from about 2006-2008), I am familiar with the referral and acceptance process for OPWDD services.  I believe that Ryan meets the criteria for OPWDD services and I hope he will be given favorable consideration."    Hopefully we hear word by the end of the summer.

Jack turned 11 months old this week!

Last soccer game

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Father's Day dinner

Ryan and Amelia

Over the past two weeks we've been working with a Behavior Analyst through a company called Little Steps Great Success.  The analyst has interviewed us several times and comes to the house once a week to observe Ryan in order to create a Functional Behavior Assessment.  Things are going well so far and she has been able to collect data on Ryan. We were hesitant at first worried that she wouldn't be able to collect any data since Ryan tends to be on his best behavior around new people.  But during the first full session Ryan was very resistant to doing the tasks she asked of him and she was able to observe a part of the Ryan we see on a daily basis.

Ryan is still taking the Focalin twice a day.  His eating habits have changed drastically.  His appetite is about a quarter of what it used to be.  He rarely finishes a meal (even with smaller portions) never mind asking for seconds or thirds like he used to.  Sometimes he gives us a hard time about eating and skips a meal altogether.  This is common with this type of medicine.  I just hope he doesn't lose too much weight as he is already so thin and bony.

Julia performed a solo in a recital this weekend.  Ryan said the best part was when she came out dancing and the audiance said, "Awwww!"  Here's the link to the video- Julia's Solo

We're looking forward to sharing our next post with you from sunny California!

DC

Week 164 - Medicine twice a day

Week 164

Dr. Hahn decided that we should try giving Ryan his medicine, Focalin, twice a day.  Dawn went into school on Tuesday to go over with the nurse the best way to give him his medicine.  It is tricky since he cannot swallow a pill and we usually give it to him with a spoon full of peanut butter.   Since that system works, the nurse agreed to keep plastic spoons and a jar of peanut butter in her office for Ryan.  He comes down around noon each day and takes a second does of his medicine.  So far his behavior has been good both at school and home but we are still having a difficult time with him and his work.  There has also been some changes in his sleep since starting to take the second dose.  Ryan would go to bed at 8 and be asleep within 15 minutes.  This week there were nights where he was up in his bed talking to himself past 9 and 10 pm.

This past Wednesday it was Grandparents/Senior breakfast at the kids' school.  Grandma Jeanne and our neighbor, Carol, took the kids and they all had a good time.  Grandma remembered from last year that Ryan got upset because he did not win any of the prizes.  So she and Carol prepped him on the ride there reminding him that not everyone wins something and they are there to have a good time.  He did not win anything this year but he seemed okay with not winning.

Today we had a behavior analyst come to the house to do an initial intake on Ryan.  This is someone that teaches with a friend of Dawn's and she has a business on the side.  We are going to start with a Functional Behavior Assessment over the next couple of weeks and see where the data takes us.  She spent an hour today asking both Dawn and I questions about Ryan and what we thought of the school's program and what we hope for Ryan.  It was a good initial meeting and in the coming weeks we hope she can give us some strategies to help us with Ryan.  We had a difficult school year with him this year and we don't want a repeat of this when Ryan enters second grade.

PC

Week 163- Autism Speaks Walk

Today we braved the 90 degree sweltering weather to walk for Autism.  We had some of our "regulars" with us and even some "newbies" and despite the heat it was a nice day.  Thank you to everyone who came out to support Ryan, our family, and all those with Autism!

Ryan was very excited to participate but he did something this year that he hasn't done in the past.  He walked in front of the sign the entire way and argued with anyone on our team (especially Julia) who wanted to walk next to him.  He wanted everyone to walk behind him.

I did not set up a link for our team online this year like I have done in the past.  I just never got around to it.  I took the donations I had received to the walk which totaled over $800.  Thank you to everyone who donated!  I know there are a few more people who contacted us about making a donation.  You can mail us or give us a check made out to Autism Speaks and next week we will send it all in together for our team to be combined with the donations handed in today from our team.

Here are some pictures from today's walk...

Our 2013 walk team

Ryan and Julia getting ready for the walk.

Ryan poses with the Forgione ladies.

cousins

Unfortunately we were missing a key component to our team today.  Phil could not make it to the walk. Jack has been sick all week with high temperatures.  When his fever broke he developed the Roseola rash.  The heat and sun irritate the rash, so Jack needed to stay indoors this weekend and Phil stayed with him.  Jack has had a very uncomfortable week from whatever virus was in his body and was irritable most of the time, but we did manage to get a few smiles out of him.  

Jack put on his hat to pose for the camera!

Quick update on Ryan's appointments: he met with the psychiatrist this week and there has been another adjustment with his medication.  We are taking him off of the Fluoxetine (Prozac) in the evenings, and doing a trial of a double dose of the Focalin each day.  He will take one dose before we bring him to daycare and a second dose at school around lunch time.  The nurse will have to administer it.  The hope is that the second dose will kick in when the first dose has worn out and he will have better afternoons at school and at home.  The second dose should wear off in time for him to relax and go to bed on time. We'll see how this new regimen works out this week.  

DC