Meet the McNeil Family

Meet the McNeil Family

Sunday, August 28, 2011

Closed Carousel

We survived Hurricane Irene with minor damage. We had about 20 hours of rain and wind, but we only lost power for a few hours in the middle of night. A large tree did fall down, missing our van by only a few feet. All in all it was actually a nice day to stay in, cuddle with the kids, and watch some movies.


We woke up today to a clear sky and sunshine. We had to get out of the apartment, so we headed into DC for a picnic lunch and walk around the National Mall. The kids were thrilled to get out and move their legs. We ate in the Sculpture Garden near the fountain. Matt protected us from some very aggressive and hungry squirrels. I gave everyone a laugh when I went to throw away our trash and another aggressive squirrel jumped out of the bin at me. (I screamed like a little girl!)

We took a nice long walk, enjoying the sunshine and the breeze. As we passed the carousel (which is under refurbishment, not damaged by the hurricane), Oliver started to whimper. He pulled away from my grip and ran to the fence surrounding the carousel. He had a huge smile on his face, waiting for Matt & I to let him ride. I tried to explain that it was broken - signing the word to see if he would understand. He just kept walking around the fence, trying to find his way in. Eventually he took my hand and cried as we walked away.

I was so impacted by that moment. Oliver and Waverly ask for nothing. Oliver will make a dash for the playground or carousel, but neither of them have ever been in a store and cried for a toy. Even when they were younger and I took them to the shop to pick out a gift, they would pull something off of the shelf and within a moment put it back. I always wanted them to show some interest in choosing something special, but they never seemed that interested. It was so fascinating to see him react so strongly to a desire. We never pass a carousel without a ride - it is something I decided soon after the kids were diagnosed. We would take advantage of the little things that brought them so much joy. It was so difficult to see Oliver confused, unable to understand why I had changed the rules and withheld a ride on the horses.

As I held his hand and walked past the carousel, I was so emotional. I wished I could have given him a ride - given him a 100 rides. It truly is the little things...

Saturday, August 27, 2011

Great First Impression

Thursday night we all went to Jill's House for an Open House. Matt had never toured the facility and they were having an information meeting for their school partnership program. One of their goals is to partner with local schools to give families weeknight respite. Jill's House staff would pick the kids up at the end of their school day, take them back to JH for the night and then return them to school the following morning. There were 4 families there from the kids' school. And...this is the part that was so special....the principal and both of the new special education teachers also came. It was a great opportunity to meet the teachers and introduce them to our children. They were also able to get to know JH, in case the school program is implemented there. I was so impressed to see the 3 of them there, during the evening, to support their special education community.

The kids had a blast. I think Waverly was upset that she couldn't stay. Some of the girls who have worked with her during day camp were there and she was so excited to see them. Oliver was thrilled to finally see what was behind the locked doors. He had a blast playing in the gym, jumping on the trampoline, and having a cone at the ice cream party.

It was yet another reminder just how lucky were are here in NoVA, to have such an incredible facility so close by. I had been very apprehensive about this next year; so many changes at their school. I feel so much better already. I think this is going to be another great year at VES!!

Wednesday, August 24, 2011

Earthquake!!

Yesterday afternoon was certainly exciting. As the kids and I settled into watching "Cars" after lunch and  walk, the entire apartment started to shake. I have been through an earthquake before when we lived in California, so I knew right away what it was. However, living in Virginia, it was so unexpected and definitely scary. Thankfully, Matt was working from home. We both picked up the kids and dashed outside. (Now I know running outside is not the best thing to do in a quake.) No shoes, but I did remember to grab my phone and keys. We gathered along with all of our neighbors in the parking lots. I had our van keys, so we buckled in the kids, turned on a movie for them and the news for us. 5.9 earthquake centered in Virginia. Wow!! It definitely made for an adventurous afternoon. We didn't have any damage in our complex, but a few local buildings sustained some significant damage and some cars were destroyed by falling debris. Here's hoping today is less rumbly.

Monday, August 22, 2011

Day Camp

Waverly attended day camp the past 2 weeks at Jill's House. Summers have always been a bit difficult for us. Waverly & I do not enjoy the heat and by the end of the summer boredom sets in. The day camp option was such a treat. Waverly was at JH for 6 hours each day. The zoo brought small animals for the kids to meet, a therapy dog stopped by, a local hippotherapy organization brought ponies, there is a beautiful indoor pool, a gym, craft room, computer lab, music room, musicians come to play for the kids, plus an amazing playground. Each day we pulled into the parking lot, Waverly was all giggles. She knew she was going to have another great day. And each day I picked her up she was all smiles and totally exhausted. Oliver and I were able to take advantage of the time by going to our favorite parks and finishing up school shopping (not his favorite activity, but snacks kept him happy).

I am so thankful to have this organization just a few miles away. Our summer was much more fun for all of us, because of their day camp program.

Thursday, August 18, 2011

Another House Update

We are still riding the short sale roller coaster. Our realtor warned us that this process takes a long time and there are many twists and turns. Man was he right!! The mortgage company who had been managing the short sale sold/traded/gave our case to another mortgage company. This could mean we start all over again or it could mean that the new company picks up where the old one left off. We have no idea. We hope to find out more next week, once someone has been assigned to our case. 

It has been over 3 months since our offer was accepted. I had hoped we would close on the house before school started, but obviously that is not going to happen. We were told short sales can take up to 6 months and I suppose that estimate is accurate. I guess that means we are halfway there.....if the bank approves the sale.

Wednesday, August 17, 2011

Not Ready

I had a bad day. As I loaded up the kids this morning to take Waverly to Jill's House for day camp, Oliver had a really difficult time climbing into the van. Typically he climbs right up to his car seat and waits for me to buckle him in. Today he just stood there. He moved his grip from the door to the car seat to the driver's seat. He put his foot up and then his knee. He looked confused. Later in the day as we walked back to the apartment, instead of walking right to our door as is his routine, he wandered into the courtyard. Again, he looked confused.

Obviously, I know he has Sanfilippo. However, he is higher functioning than Waverly and therefore my healthy little boy. Compared to his peers his is years behind where he should be. He has never truly uttered a word. I have never heard him say mommy. But I can always count on him to walk ahead of me, while I hold Waverly's hand. He will stop at the sidewalk, so I can walk him to the van. He runs ahead, straight to the apartment door to wait for me. Those little things mean so much. He is such an obedient little boy - my little helper.

Today, I saw glimpses of Sanfilippo. Reminders that things are going to change. I remember watching Waverly lose skills and see the confusion on her face. Little things she could do by herself all of a sudden became too difficult. I saw signs that those changes are beginning in Oliver. I am simply not ready for this.

I positioned his little hands - one on his car seat and another on the back of the driver's seat. I lifted his foot up onto the floor of the van. He remembered and hoisted himself up and into his seat. I buckled him in and gave him a big kiss on his forehead. Well done, Oliver.

Sunday, August 14, 2011

Beach Bound

We took the kids to Rehoboth Beach yesterday. Matt and I were in desperate need for some sand and surf. We knew Oliver would love it, but Waverly isn't a big fan of the water. And the last time we took her to the beach, she wouldn't stop eating the sand. Yuck!! I did a lot of research and found that Rehoboth offered beach wheelchairs for free - first come first serve. We left EARLY to ensure that we would get one. And thanks to a friend, we knew we brought an extra beach umbrella to stick into the chair to keep her shaded. Wavey was happy in her chair looking at some of her favorite books. She also took lots of walks up and down the beach. Oliver loves all things beach. He loved playing in the sand with his shovel and bucket. He also loved running in the waves and going out to deeper water in my arms. We had a fantastic time.

Waverly in her beach wheelchair 

 Matt and the kids walking in the surf
So happy to be at the beach 

Playing in the sand 

A squinty smile

Friday, August 12, 2011

We Will Miss You, Erin!!!


Waverly had her last day of summer school last week. Even though I wrote about it already, I had to post a photo of Wavey and her 1:1 Erin. Erin worked with Wavey this past school year and summer school. She has been a God sent. Matt and I could see that Wavey loved Erin and was being well taken care of by her. I had the opportunity to pop into the classroom multiple times and I was always happy with what I saw. Erin reinforced PT and OT goals that our therapists thought would be useful. She worked tirelessly to keep Wavey moving and comfortable through her swelling knees and pain phase in the spring. She defended her against an unhelpful staff member. And she went far beyond my expectations in making MPS Awareness Day a school wide event. She is moving out of state next week and we are really going to miss her. I love this photo of them. I love that even with the face painting activity, Erin chose to have a purple ribbon "tatoo" on her arm in honor of Waverly. We have been so fortunate to have her and we are going to miss her terribly. It is difficult to watch someone who loves my child so well leave. Good luck in all you do, Erin!!! We love you and will always remember your love for Wavey. Thank you!!

Sunday, August 7, 2011

Oliver & the Carousel

I am not sure if you can see it in his face, but Oliver is scared. And that scared face breaks my heart.

We took the kids to our favorite park on Saturday afternoon. It was later in the afternoon and we basically had the place to ourselves. I love that! This particular park has a carousel in the middle and Oliver loves to ride it. He typically runs to the swings and then makes a beeline for the carousel. We usually ride it a few times before only the promise of a snack makes him release the horse's rein.

We followed a similar pattern yesterday. Swings and then a run around the playground and then over to the carousel. He never knows where to get in line and just stands by the gate surrounding the carousel hoping someone will let him in.

With our tokens in hand, we selected an up & down horse and waited for the bell. Oliver was strapped onto his horse and I was standing next to him for support. Unlike all of our other visits, once the ride started moving he panicked. He grabbed onto my shoulder with both arms and tried to climb off. He whimpered and had a frightened look on his face.

His fear brought back memories of Waverly. All of a sudden, she grew so scared of not feeling secure. She became fearful. Oliver had that same look in his eyes yesterday. It was sad to see. It was Sanfilippo. He was trying so desperately to communicate with me in those few moments of going around on the carousel. All I could do was put my arms around him and tell him it was okay, the ride was almost done. 

When we got off he ran off and instead of running back to the gate for another spin he took my hand and walked me out of the park.

Quiet Weekend

Waverly had her last day of summer school on Thursday. It was circus themed and she came off of the bus with with a pink nose and whiskers. She has never had her face painted before and I wasn't sure if she would sit still for it. Check face painting off of the must do list. We had to say goodbye to Wavey's 1:1, too. We took her out for lunch on Wednesday. She is moving out of the area and we are so sad to see her go. She has been a God sent. She is amazing with Wavey and her love is evident.

We had a quiet weekend at home, complete with a playground visit, pool time and the farmer's market. Still no news on the house, but we did receive a little bit of good news. Nothing to report, but fingers crossed that things are moving forward.

Thursday, August 4, 2011

Matt is Running!!

Matt and I are writing this letter to you on behalf of very special children. Jill’s House is a local
organization dedicated to providing care and support to children with special needs and their
families through overnight respite care. For those of you who read my blog, you are well aware just how special Jill's House is to our family. Did you know?

• More than 80% of marriages of parents of special needs children fail
• 61% of parents of special needs children report respite as an unmet need
• Respite programs across the country often have waiting lists of up to 500 families

Since opening in October 2010, Jill's House has provided over 90 families with respite
care. Waverly has had the opportunity to spend a weekend there in May and she has enjoyed a few weeks of their day camps this summer. When Oliver turns 6, he will also be able to have adventures at Jill's House.

Matt is running the 36th Marine Corps 10k in Washington, DC on October 30th, and we
would like to ask you to help us reach our goal of finishing the 10K
all while supporting Jill’s House. The financial support that he receives will directly help Jill’s House
provide respite to over 600 children per month.

We are grateful for you taking the time to read this, and for your consideration in
helping me raise awareness through “Team Jill’s House 2011” by making a contribution.
If you choose to make a contribution, you can click HERE to make a tax deductible donation.

Please help us reach our goal of $750. I hope we can greatly surpass that goal and give back to an organization that has given us so much.

Tuesday, August 2, 2011

My Little Student

I am so proud of Oliver. He is doing great this summer. He is riding the bus to and from school without any tears. He seems excited about going each day. I have been getting lots of positive reports from his teacher, who will also be his teacher in the fall. She sent me this adorable photo of him working on fine motor skills. I love that his little tongue is sticking on in concentration. He is such a good little boy.

Monday, August 1, 2011

House Update

I had a personal goal of finding out about the short sale today. Unfortunately, still no news. The BPO (Broker's Price Opinion) has yet to be completed by the bank and nothing can move forward until that it done. I am beyond frustrated with this process. I was warned that short sales are difficult and time consuming, but I simply didn't think it would be this rough.

Thanks to all of you who have donated to "A Hundred For A Home", in order to make a home purchase possible in NoVA. I hope to share good news with you soon. Please send us your positive energy, prayers and thoughts.