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 61

Happy Father's Day!

The kids absolutely adore Phil!  He is definitely a hands on kind of dad and always finds time for them, and me.  Here are pictures of them with the gifts they made at their schools. 

a tool belt from Ryan

a tool belt and hand drawn picture of daddy from Julia

 

a picture frame painted by Ryan



The front of Julia's card

The inside of Julia's card

Ryan's card; we were so surprised when we opened it up and saw it was from Ryan.  Look at all of the writing he did!

Inside of Ryan's card

 

The questions Ryan answered about Phil

This is Ryan's last week at PARC.  I know he will miss going there and we will certainly miss the comfort of knowing that he was there in great hands!  A HUGE thank you to all of the teachers and therapists that worked with Ryan this past year.  He has come such a long way and you have played a big part behind his success!  I know we posted these pictures last week during his graduation blog, but we're posting again to give another shout out to Ryan's teachers!



For graduation gifts, Ryan received lots of new letter and number books to help prepare him for Kindergarten.  Here he is practicing writing his letters, which is a big deal because he isn't too fond of writing.   



Ryan is not so great about sharing his things.  For weeks I've been trying to get him to agree to let his teacher borrow our copy of the movie Tangled.  He loves his teacher, but he wouldn't let her have the movie, even for just one night.  To Ryan, it's just "not right" for the movie to stay with someone else; it's his and it needs to stay home with us.  One day I was able to sneak her the movie without Ryan seeing, and we had to bribe Julia not to say anything because she of course doesn't miss a trick and notices everything!  On a similar note, Ryan puts together these elaborate train sets on the floor.  When he goes to bed, our cat likes to go sit inside the tracks, and I'm sure she does the same while we are at work/school.  I'm not sure Ryan would approve of sharing his train tracks with Helen!

When the kids are away, the cat will play!

Last week of school, hang in there everyone! 

DC

Day 65

Happy Father's Day to my wonderful husband Phil.  Without him I wouldn't be able to do half of the things I do.  He gives me strength and support and there isn't anything he wouldn't do for our children.  He's wearing the handprint shirt that the kids and I made him last week.

I feel bad that his Father's Day was a bit stressful.  Ryan had another awful day.  He handled the morning fairly well.  We took the kids to see Toy Story 3 and they loved it.  But then the rest of the day was like a roller coaster ride.  His behavior was erratic, unpredictable, violent, and contagious- Julia's behavior mimicked his, making for a tough day for us (and our company).  And we have the hole in our wall to prove it!

I don't think he ate something yesterday or today that he isn't supposed to have.  I'm not sure where this change is coming from.  I fear that his body has built up a tolerance and has become so accustomed to the GFCF food and supplements that their effect has worn off.  I'm crazed thinking that this is the case. 

What made these past two days even worse for me is knowing that we haven't seen this kind of behavior since before the diet started 65 days ago.  We were beginning to forget how bad it used to be, and the past two days has brought back all of those memories.  I can't go back to that time, especially with the summer coming up; I can't be home alone all day with him acting like this.  I will go insane.  I'm at a loss.  I don't know what to change or adjust at this point because I have no clue at all as to what may be causing these mood swings.  I guess we'll have to wait it out a couple of days and see if this passes.  He doesn't go back to Dr. Bock until the first week in July so for now we will have to figure this out on our own and just be as patient as we possibly can.

DC