Meet the McNeil Family

Meet the McNeil Family

Wednesday, September 30, 2009

Volunteers



The Make-a-Wish volunteers who have been working to grant Waverly's wish came over tonight for a little going away party.  They are both so sweet and do such an amazing job with families.  They brought gifts for both Waverly and Oliver - treats for on the plane, a backpack, coloring books with crayons, board books, stickers, sunscreen and an lovely scrapbook album for all of our Disney photos.  We received all of the details for our trip.  They really do take care of everything!  We are so excited for this trip.  Matt and I are both in desperate need for a break and ready to have some family fun.  Only a few more days and we are off to Disney World!!  Thank you Make-a-Wish.

Tuesday, September 29, 2009

Aware

Tonight we went to Family Night at Oliver's preschool.  They had a pizza party and spoke about the importance of reading to children.  A local librarian read a few books and sang some songs.  Oliver was incredibly fidgety and was unable to sit still for 20 minutes.  I know that he is only 2 and most 2 year olds can't sit still for that long, but he used to be able to do this.  He had an unbelievable attention span.  We have noticed the changes - a bit more manic at times, less focused, putting things in his mouth.  But tonight as I watched him get in and out of his chair and pay hardly any attention to the story and songs, I was taken back in time.  I remember when Waverly was about Oliver's age and I tried taking her to "story time" at the library.  She just acted differently from all of the other children.  I saw Waverly in Oliver.  And to be totally honest, it terrified me.  I was blissfully unaware of Sanfilippo when Waverly was this age.  Now I am aware of every change, every loss of skill or behavior difference.  I hate watching my sweet little boy begin to fade away.  We are still early in his regression, but the subtle glimpses of what is to come is unbearable.

There are pluses and minuses to his early diagnosis.  We have been able to be quite aggressive with therapy and early intervention.  We are seeing all of the specialists to catch any health issues early.  However, we are hyper aware of the changes this disease will cause.

My poor sweet little boy.

Saturday, September 26, 2009

Backpack

We took the kids to the National Book Festival this morning.  We were last there when I was pregnant with Oliver.  (For those who know the story, that was the "you are covered in poop" moment.)  We spent a few hours walking around the various tents - we heard Judy Blume read "Madeline" and saw Mr. McFeeley from "Mister Rogers' Neighborhood".  It is an incredibly fun event and if you ever have a chance you should attend.  My favorite moment of the day came as we were driving.  We put a Dora DVD on in the car to keep the kids content.  Dora asked where can she find something and Oliver said backpack.  Of course it sounded more like "ack ack", but we knew what he meant.  Matt and I both looked at each other to make sure we heard correctly and celebrated.  I am so proud of him.  He has been learning so much in preschool and the communication based approach has been amazing.  It is the little things.

Friday, September 25, 2009

Peer Models

Last night was parents night at Waverly's school.  Matt and I were really excited to attend and find out more about Waverly's day.  Her teacher is wonderful!  She has been teaching moderate-severe special needs children for 16 years.  She is passionate about what she does and you can tell upon meeting her that she loves her students.  We were able to see the daily picture schedule, her little cubby, the play area, the magic touch screen for the computer and the switch button for the other computer.  Waverly uses the switch button - it is a large button that Wavey can push (with assistance) to advance a story.  The technology folks put together a Winnie the Pooh story that she loves.

There are typically 5 children in her class.  Wavey is the youngest, most of the students are in 2nd and 5th grade.  There is a group of children next door with similar needs, so the teachers are able to team up throughout the day for specific activities, such a circle time and cooking.  Wavey gets adaptive PE 3 times a week, music once a week and art once every 2 weeks.  The OT, PT and speech therapist also come into the classroom to work with the children throughout the week.

My favorite part about the visit was hearing about the PE class yesterday morning.  There was a mix-up with schedules, so a few children from Waverly's class ended up in the gym at the same time as a 4th grade class.  Now, typically one of the most difficult moments is when an adult of child looks at Waverly with "that look".  It is a combination of confusion, fear, and sometimes disgust.  I hate those moments.  They typically make me want to cry or fill me with anger.  But, I am trying to look at these interactions as teachable moments.  Many people simply do not understand how to approach a child with special needs (or the parents, for that matter).  I am trying to remain calm and introduce them to Waverly.  I like to tell them right from the start about her disease and why she acts the way she does.  I think people want to know, they are just unsure how to ask.  Now I noticed that the PTA is looking for a special education representative to be a part of the team and specially work on planning something for special education week in December.  I have been talking to Matt about this and thought that a peer modeling program would be such a terrific way to give kids the opportunity to volunteer, while being exposed to children with special needs.  I believe that children, if given the opportunity to help, with then feel a sense of protection and love for the special education students.  They could come in a read a story, help with computer games, assist with crafts, etc.  What a wonderful team that could be!  Anyway, back to my story about gym class yesterday....since the 4th graders and Wavey's class were in the gym together, the gym teacher thought this would be a wonderful time to attempt some peer modeling.  The 4th graders were assigned a child and then they worked with them on an activity.  Some of the kids were playing on a mat, working on rolling.  Waverly loves to walk and she loves to hold hands, so a few girls took her hands and walked her all around the gym.  Waverly loved being with the big girls and the girls fell in love with Waverly.  They had a great time walking with her and listening to her giggle.

I almost started crying as the teacher was telling me about it.  I love that these girls enjoyed helping Waverly.  I can just imagine that there are a few 4th graders who, when passing Wavey in the hall, will stop and say hello to her and give her a smile.  That is such a beautiful picture.

Tuesday, September 22, 2009

1:1

Hooray!!  We just got word from Waverly's school principal that the "unique needs request" was approved and they will be hiring someone as soon as possible.

Sunday, September 20, 2009

Happy Birthday!!



Oliver standing in front of our favorite little breakfast spot.  We go there every time we are in PA with my Nana.  They make the best peach pancakes this time of year.














Waverly has been singing "Happy Birthday" all weekend.  Her class decorated cookies in school on Friday afternoon and that must have reminded her of a birthday party.  She has been repeatedly singing the phrase "Happy Birthday" since she came home.  We drove up to PA to visit family and we went to a family picnic.  My mom made a cake and we decided to just pretend it was her birthday, since she was singing about them continuously.  As you can tell from the photos, she LOVED it.  We are going to have to celebrate her (un)birthday more often.  Her smile was beautiful.

Wednesday, September 16, 2009

Bari-Yum

This morning Waverly had a barium swallow study at Children's.  Thankfully she loves the taste of barium infused foods.  She did a great job.  Structurally, everything looked normal.  There was one instance while she was drinking the liquid that it started to go down her trachea and then was redirected down her esophagus.  This is exactly what we see at home.  When she is drinking from her cup or chewing thus creating a lot of saliva, she will cough and begin to choke.  We will get a formal report in a few days, but for now the advice was simply to allow time between sips and not let her to glug her drink.

Tuesday, September 15, 2009

Pizza Fridays

We are in the midst of school week 2.  I am still trying to adjust to this new routine.  It is so strange to have both kids in school in the mornings.  Oliver is doing really well.  He still cries a bit when we put him on the bus in the morning, but the tears stop there.  His teacher says he never cries once he is at school and only whimpers during some transitions.  His favorite time of the day is circle time...especially when there is music incorporated into the activity.  He has been doing much better with his participation and he is vocalizing so much more than he used to.  Although it is still difficult to make out words, he is attempting speech sounds, which is incredible.  I pack Oliver lunch every day (they have lunch together before heading home - they can work on feeding skills and social skills during the meal).  Well Fridays are pizza days.  (I did not know this.)  Oliver noticed that some of the kids were eating pizza from the cafeteria and got upset.  Needless to say, I have started a lunch account for him so he can join in on pizza Fridays.  He loves the bus ride home.  There is nothing cuter than seeing his little face peeking around the seat as they pull up.  I can hear him squealing in delight and his smile is heart melting.  I love being able to meet him at the bus stop every day.

Waverly is also doing well.  There is a significant difference between preschool and kindergarten, I am discovering.  And even though Waverly is in a self-contained special education class with other children of varying grades, it is very much "big kid school".  The classroom doesn't have the toys and play areas like last year.  It seems more structured.  It is confusing being that Waverly is at a lower developmental age today than she was this time last year.  But she seems to be enjoying herself.  I have less contact with her teacher at the moment.  I have only met her one time.  (I am hoping this will change after our parent night next week.)  The school just got Waverly a new chair that is untippable and much safer for her.  We have yet to get a 1:1.  I am trying to be as cordial as I can, since it is the beginning of the year.  I don't want to have the "demanding parent' label, however, I also need to make sure Wavey is safe while in the school's care.  She is her happy, giggling self when getting on and off the bus.  She is such a joy.

Sunday, September 13, 2009

Let's Talk About Poop

I don't want to be too descriptive or go into too much detail, but poop has a major impact on our lives.  Unfortunately, many kids with Sanfilippo have chronic diarrhea.  It occurs many times each day.  Waverly typically has at least 1 clothing change per day, but sometimes 2 or more.  The reason I wanted to talk about this unseemly topic is that it truly does dictate what we do, where we go and when we go.  At times I feel like we are held captive by poop.  It usually involves the fact that there is not a great place to change her (she is obviously too big for the fold down changing tables - so is Oliver).  And I do not like the idea of laying her down on a disgusting restroom floor - yuck.  Plus, with each "movement" there is leakage and that can cause additional headaches.


Our kids go through enough because of this tragic disease.  For some reason the poop thing has always been a stressor for me and a huge frustration.  Nothing seems to help - diet, probiotics, supplements.  And it always strikes at the most in opportune times - in the check out line, on rides, car trips, restaurants, bus ride home from school, etc.  I hate Sanfilippo.  I hate poop.

Saturday, September 12, 2009

Visitors

We met our friends Siobhan & Erin on the National Mall today.  Siobhan was our babysitter in London and the daughter of one of Matt's coworkers.  Much to our surprise there was a large protest, so we avoided that end of the Mall.  We were able to get some great shots of the kids.  My favorites are the ones of Oliver in front of the White House.  We had a wonderful few hours enjoying a beautiful day together.
(Oliver is "tickling" Waverly in the one picture.  She had the giggles and kept falling over.)

Thursday, September 10, 2009

Going Well

I am very pleased with the first week of school thus far. Oliver has been having a great week! He still cries when we put him on the bus, but he stops once they get moving. He isn't shedding any more tears in the classroom and is beginning to participate in activities. He comes off the bus all giggles and smiles. Yesterday he colored a school bus picture. It is the first item I put in his preschool memory box.

Waverly is also doing well. Her teachers sends home a little synopsis each day. I am thrilled because the staff is listening and incorporating things that Waverly enjoys. They are also allowing her time to take walks each days. Walking is so calming for her and will improve her behavior in the classroom. Her teacher received some special seating for Waverly to keep her safe and comfortable.

Wednesday, September 9, 2009

"First" Day of School Photos

Oliver is handing me a leaf. He loves to "garden".

Oliver looking proud in his backpack

Getting some energy out before the bus arrives

Waiting for the bus

Practicing stairs

Doing laps while waiting for the bus

Beautiful Waverly

Wearing her backpack (I love her feet)

Very proud

Lover her smile.

Waiting with Daddy for the school buses

Tuesday, September 8, 2009

First day of School

***I was so frantic this morning, I neglected to take the obligatory "first day of school" photos. I will take some tomorrow for the "first" day of school photo op.***

Waverly and Oliver both started school today. Waverly is used to the drill. She was excited to see the bus pull up and giggled all the way up the stairs to her seat. She is starting at a new school and attending an all day program. It is going to take her some time to adjust to the new surroundings and schedule. She is in a special education classroom within a local elementary school. Her teacher reported she had a good day. She enjoyed playing with some stacking rings that light up and play music. She came off the bus this afternoon laughing and smiling. I think she enjoyed being back in her school routine. She loves the energy of a school and being around other kids & adults.

Oliver is new to the whole "riding the bus" routine. Matt and I have been really hesitant about sending him to school on the bus, but due to schedule conflicts (getting Wavey on her bus) and the convenience, we opted to have him ride the bus. He was thrilled when the bus pulled up and I told it is was HIS bus. He loves buses and always wanted to board with Waverly. He went right up the stairs, turned around to wave and say "dye" (his way of saying "bye"). The driver buckled him into the booster seat and away they went. I couldn't see his head, but I did see his little hand touching the window. I don't think he shed a tear. He had a great day at school! He is with the same teacher he had this past summer. His teacher reported that he loved music class and didn't cry until it was time to leave. (He wasn't sad about leaving, he just has trouble with transitions.) He is the only student on his bus home. The driver said he cried most of the way, but recovered quite well when he saw me. He was exhausted and took a 2 hour nap before we had to head off for therapy.

All in all it was a successful day. I think they both had a wonderful time. I am so thankful that Wavey is able to attend school in a modified classroom that meets her needs. I love that Oliver is able to learn new skills and make friends. And the break for me doesn't go unnoticed. I am excited to do some things for me in the mornings. I am already planning on volunteering at the kids' schools and I think I am going to attend a group for moms of children with special needs.

Sunday, September 6, 2009

Rain & Chewing

Yesterday was our 11th wedding anniversary. Matt had to work, so we put off a celebration until today. It was beautiful, so we went down to walk the National Mall and visit the Museum of Natural History and the National Gallery of Art. Oliver loves the mammals room and Matt & I enjoy the modern art collection. Waverly simply enjoys being around all of the people and riding in her stroller.

While we were walking to lunch at one of our favorite DC food courts, Waverly started jabbering. And then all of a sudden she said "rain, rain, down". Wow!! She was singing "Rain, Rain, Rain Came Down, Down, Down" from "Winnie the Pooh". I always sing a Pooh medley of songs to her and she used to sing along with me or at least finish the lines. She hasn't said a word for weeks, so it was incredible to hear her say 2 words in song form. Music to my ears.

Sweet little Oliver has also being doing something new this week...putting things in his mouth and chewing on toys. Waverly started doing the same thing around age 3. It is typical for kids with Sanfilippo to have an incredibly strong desire to chew. But seeing it manifest in Oliver feels a bit like the beginning of the end. This is a blatant reminder that he has MPS. Matt and I hate seeing this new behavior. The impulse to chew and mouth items is so strong that it takes over the child's ability to appropriately play or participate in an activity. I don't want to see Sanfilippo impact Oliver's day like that. I hate knowing what has happened to Wavey is beginning to happen to him.

Friday, September 4, 2009

Open House #2

This morning was Oliver's open house. He was able to go with me to meet his teachers and classmates. We are fortunate that his summer school teacher will have him in her class this year, too. She is fantastic!! Oliver spent the first 10 minutes screaming, but his teacher put on some music for him (always calms him down) and starting rolling a ball back and forth. Then all of a sudden he hopped up off of my lap and began to play. I was so proud of him!! He tried on hats, put all of the stuffed animals on a boat, and played with some fake food - he found 2 ice cream cones he kept trying to eat. All of the crying over the summer was worth it. He is going to have a much better transition into the school year, because of his experience at summer school. I am so thankful the school district allowed him that opportunity.

Oliver is also going to ride to the bus to and from school. I am still nervous about putting my little boy on the bus, but we are going to give it a try. He may actually love it - Waverly does.

Thursday, September 3, 2009

Open House

Today was open house at Waverly's new school. Being the type A mom that I am, I came prepared with a binder in hand for the teacher. I included a lot of information about Sanfilippo and 2 pages of "Wavey Tips" (favorite books & songs, ways to calm her, how to feed her, her patterns, likes & dislikes, etc). Waverly's new school is only a few miles from our home and is currently undergoing major construction. When we toured the school last year, the special education classroom was huge. I loved the extra room for Wavey to wander. Unfortunately, her new room is tiny. There is zero room for movement. Her teacher is incredible though. She has a lot of experience with moderate - severe special needs students and she has observed Waverly in preschool a few times. I feel very confident that she is going to be a great fit for Wavey.

The only hitch is the school has yet to hire a 1:1. There has been a mix-up regarding paperwork and approval. The principal, who we really like, is going to submit the necessary form tomorrow. I hope the powers that be will see the urgency in providing Wavey with an assistant. It is going to be a tough first week for her, since it doesn't look like things are going to come together by Tuesday.

Tuesday, September 1, 2009

Dreams

Waverly decided to sleep in this morning. I actually had to wake her up in order to get to her occupational therapy appointment on time. I love watching her sleep. Before I was able to stir her, I thought about her dreams. Her eyebrows were furrowing and her eye lids fluttering. I wondered if when she dreams, she is free of Sanfilippo. Does she have clarity and experience life as she was intended to be. Is she able to move and dance and sing and speak. As sad as it is to think about, I actually found some comfort in her dreams. I will never know the way her mind works during sleep, but I hope that she is able to have freedom in her dreams. I hope she can do all of the things I know she would enjoy.