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

Week 59

Memorial Day/Phil's Birthday Celebration

The kids waving their flags from Grandma for Memorial Day

Singing Happy Birthday to Phil

Amelia, Ryan, Alyssa, and Julia

Ryan's first soccer practice

Visit to Dr. Bock.

We had an appointment this past Tuesday to get Ryan's blood work results.  We discussed Ryan's behavior since our last appointment.  He has been regressing in his behavior and Dr. Bock told us that this could be a side effect of the new supplement that he prescribed called PhosChol.  We are now taking Ryan off of this supplement, as well as a couple of others, and are trying a few new supplements with Ryan based on his updated blood work.  He is apparently low in iron and a few other areas.  They are:  Iron Liquid, Liquid D3, essentail GSH, Lith-Oro, and a different type of Probiotic.  We will now have to get into new routines to fit all of these new supplements into his diet.  But we always manage; it is just a bit overwhelming each time we go to Dr. Bock.  Ryan was a little shy with the doctor this time but we did have to wait over 45 minutes in the exam room while he was finishing his dinner.  We found this out when we complained to the nurse that we were waiting a long time and the kids were getting antsy. The doctor offered an apology once we finally saw him but he said it was based on his first patient that caused the delay, not the fact that his office smelled like fish!  Dr. Bock did suggest that we try an IV treatment but we told Ryan that this was not a needle visit and we were not going to sit and wait longer for this treatment.  We will have to do a little research on this treatment to see if it is worth the trouble of hooking Ryan up to an IV and having his arm wrapped for over an hour.  Overall we were a little disappointed with this visit because we both felt that he rushed us out of his office.  He was behind schedule and he was trying to make up time.  Hopefully our next visit at the end of August will be better but this one left a bad impression with us.    

Our new banner came in this week, just in time for the walk!

We are on our way to the walk in just a few minutes so we'll write about it on next week's blog, and for those of you on Facebook, we'll post pictures on the Ryan Express page sometime this week.  

We went to an engagement party this weekend at a family member's house.  Ryan wasn't on his best behavior and between both kids being cranky and tired, and me not feeling well, we stayed for a few hours and left.  But it was enough time for the kids to take a dip in the pool.  At first Ryan didn't want to get wet (in all fairness, the water was really cold!) but then he was fine once he finally went in.  However, he did make sure not to get water on his face, which he dislikes very much!

First swim of the season

On Tuesday Ryan graduates from PARC!  We'll tell you all about it next week!

DC

Week 58

Happy Memorial Day and Happy Birthday to Phil!

After a long day of playing outside in the warm weather, there aren't too many things that are better than eating watermelon!

Phil's birthday was on Friday and Ryan is excited that we will be celebrating it on Memorial Day with our families.  He's been talking about it all weekend and was happy to go buy a cake for daddy.  Our family chipped in to buy Phil a new barbecue grill for his birthday and Ryan was happy to help daddy put it together.  We used it this weekend to grill turkey burgers and we'll be grilling corn on the cob, chicken, steak, hot dogs, and zucchini on it for Phil's birthday celebration.

To follow up with last week's blog, we attended Ryan's CSE meeting on Tuesday.  First thing on Monday morning the school psychologist called me to smooth things over and try to reverse the damage that the speech therapist did on Friday.  So after a long phone conversation with the psychologist we felt much better going in to Tuesday morning's meeting.  Ryan will not be going to Fishkill Plains, but to Gayhead, as we had planned all along.  They do not have an Integrated Kindergarten class at Gayhead, so he will be in the regular education classroom, but he and another little boy will be sharing a Teaching Assistant.  This is a much better situation than him having the benefit of a Special Education teacher, but needing to share the teacher with up to 11 other special needs students.  With that kind of ratio, we felt Ryan would get lost in the crowd.  And it would be very difficult to anticipate situations that set Ryan off while trying to manage all of those children.  He is in a full day program now but Wappingers does not have full day kindergarten, only half day.  We're currently working on arrangements for the other half of Ryan's day. 

His speech services will end at the end of the school year, but there will be screenings done in the fall again.  He will continue with O/T but rather than twice a week like he gets now, it has been reduced to once every 6-day cycle.  His counseling will continue.  He is in a 5-1 group counseling now and he will get a 3-1 counseling session each 6-day cycle.  While we realize that the frequency of his services have decreased, that ultimately is the goal.  And if things are not going smoothly in the fall, then we can request another meeting to address issues, and we are dealing with the Committee on Special Education, not the Preschool Committee on Special Education anymore, which is chaired by a woman who is cut and dry and in our experience does not seem like she is there for the good of the child. 


On Memorial Day Ryan will attend his first soccer practice.  We signed him up for U6 soccer in the fall and they asked us if we would like him to join a team this spring that works with special needs children.  We thought it would be a great way to get Ryan to understand the rules of the game and play with other children before he plays on a team in the fall.  We bought him a soccer ball and shin guards and he practiced dribbling the ball around the outside of the house this weekend.  He did a few laps before becoming bored with it.  And he wasn't crazy about wearing the shin guards but I think he'll be more apt to participate in all aspects of the sport when there are other boys there doing the same thing.

Also coming up this week, Ryan has an appointment with Dr. Bock on Tuesday, and the walk is on Sunday.  It's still not too late to sign up to join our team!  The walk begins at 11 am and we're gathering at 10 am.  If you need details, please let us know, or visit our team page.  The Ryan Express

And I can't write this blog today without mentioning my cousin Cara Ann, who would have been celebrating her 25th birthday today.  She passed away 4 months before her 16th birthday, an amazing feat since her family was told she wouldn't see her 1st birthday.  She survived all of those years with a rare genetic disorder called Trisomy 13.  Her family, especially her mom (my godmother Aunt Lucy) gave her great care, showered her with love, and never gave up on her.

 

Love you, Cara Ann!

DC

Week 20

Ryan received two more B-12 injections this week. The first one went very similar to the one we did last Sunday. He was awake and Phil had to hold him down. It was a high anxiety moment for all of us, including Julia who witnessed this for the first time and covered her ears during the entire process. In hindsight, we should have put her to bed before giving the injection.

For his second injection, we told him on Sunday that he needed to have his medicine in his arm.  We were leaving for a BBQ and then going straight to Playland.  We didn't want to upset him before we left so we resorted to the fact that we would have to do it late at night after we returned from Playland.  To our surprise, Ryan went to the refridgerator and told us he wanted to take the needle out of the bag.  We took it out and then he said that he didn't want us to hold him, and he wanted to sit on the stairs to get it.  We were both in shock.  I was reluctant because this was a surprise to us and we hadn't applied the numbing cream.  I knew this injection would hurt Ryan more than the others, and we've already seen what happens.  But Phil insisted that we take advantage of this window of opportunity.  Phil sat next to Ryan and held his arm in a way that Ryan didn't feel he was restraining him, but if he tried to jerk his arm during the injection he could restrain him.  Ryan was so brave as he watched me do it without moving.  He screamed that it hurt and he cried afterwards.  But he knew we had fun places to go so he didn't run upstairs to sulk.  He accepted the treat that we had waiting for him and we left the house.

Ryan has been producing some wonderful speech lately. His dialogue and conversations are more in-depth and high-functioning than they have ever been before. During the week Julia received a package in the mail with a doll house from Phil's sister. Both kids were thrilled! They spent hours this week playing (nicely!) with the doll house. It was nice to see them get along and be creative with their pretend play scenarios. At one point I heard Ryan saying, "Mommy, mommy..." and I answered him. He then said, "No, I'm talking about this mommy", holding up the mother figure that goes with the doll house. From that point on, he has been referring to the mother as "pretend mommy". It is cute to see him take the baby and say, "Pretend mommy, I need sunscreen." We feel this is unchartered cognitive and pragmatic development for Ryan and it is exciting.

It's nice to see and recognize improvements. I know we've mentioned before that living day-to-day it is not always so easy to see the improvements and it can get discouraging. But when others haven't seen him in a while the changes are more noticeable. Case in point: Ryan began transitioning back to daycare this week. He spent half the day on Wednesday and a full day on Thursday. The director who has known Ryan for two years now, but has not seen him since June, was very impressed with his accomplishments. She said he seemed much calmer and was able to stay focused and on-task for longer times with activities that would have normally frustrated him. At first I was worried that Ryan wouldn't want to be there, especially walking in with new faces (both kids and teachers) in the room. "Old" Ryan would have had a meltdown. He would have held on to my leg and hide from everyone. He would have been angered and upset when I left. He was shy and stood close to me walking in on Wednesday morning, but after a minute he sat down to eat his breakfast after giving me a hug and kiss goodbye. At the end of the day I was pleased to hear that he adjusted well and followed the routine as if he never left in June. The kids were happy to see him and he did a great job socializing with old and new friends.

We tried entering a new supplement on his list this week: sulfur powder. It has a strong, distinct, and unpleasant taste. It changes the taste of the food it is mixed with and I couldn't even force myself to eat it. I don't know how we are going to get him to eat it. Anyone out there who has experience taking sulfur powder??? So we skipped over the sulfur powder for now. He has an appointment with Dr. Bock next week and I've put it in my notes to discuss with him.

On the diet front, we'll be back to doing a lot of prep the evening before for the next day at school and daycare. Ryan will need to bring a lunchbox with prepared GFCF food for daycare and the same for his 5 hour preschool program at PARC. And we will have to rely on his daycare teacher to make sure he gets on the bus with what he needs for PARC. More next week on the beginning of the school year and what we have put into place to make the whole process easier for us and his teachers.

Speaking of PARC, Ryan had his orientation this week. There were a lot of parents and students in the room since there was one orientation for the morning students, afternoon students, partial week students, and full day/full week students (like Ryan). It was loud and chaotic.  He wouldn't walk in the room and Phil had to carry him and hold him for a little while. And even after he put him down, he stuck to us like glue for about 15 minutes. But then he warmed up and ran off to play with the toys in the room while his teachers spoke to the group. In fact, at the end of the hour, he was having such a good time playing that he was reluctant to leave. His teachers were nice and seemed very understanding and accomodating to Ryan's needs. He is in an inclusion class with approximately 12 mainstream children and 6 special education children. It is called SCIS for Special Class Integrated Setting.

Ryan met Olivia this weekend.  Olivia's sister turned 5 and we were at their house celebrating.  I brought a special cupcake for Ryan and he wasn't upset that he couldn't have what the other kids were having.  While Julia ran around playing with all of the kids, Ryan was content sitting and watching The Wonder Pets with Olivia and playing trains either by himself or with Olivia's brother.  There were a lot of people there that he didn't know and we were proud that he behaved well and didn't have any meltdowns.  It was windy out and Ryan kept saying he was scared because a tornado was coming. 

Here's a nice family shot of Olivia with her family.  After we sung Happy Birthday to Juliana we sang Happy Birthday to Olivia who turns one and a half this month.

Ryan had a great time at Playland.  He loved the rides; the faster the better.  He went on a mini roller coaster with his cousin Amelia and he loved the ferris wheel.  We stuck to the kiddie rides area for the most part and played a few games at the end of the night.  He got very wild at the end of the night.  I don't know if it was from the excitement and adrenaline, or the non GFCF chicken nuggets and cookie he had that afternoon. I'll end with some pictures of our afternoon/evening at Playland.

DC