Mason's 2nd Gotcha Day

I still get that weird time warp feeling when thinking about how long my boys have been home. Mason has been home 2 years today. On the one hand, it feels like he has been with us forever. I can't imagine our family without him. On the other hand, I remember that day so vividly, I still feel the stress of that day, the confusion and frustration, and then, finally, the relief of having him in my arms. It feels like it was yesterday.

What has been clear from that very first moment is that this child was absolutely meant to be here, with us, in this family. He brightens my days. I cannot look at that big grin without smiling myself. He is happy each and every time he sees me. He adores all of "his people," from his physical therapist, to our lovely neighbor with the Kubota :)

I would be remiss if I did not also mention Mason's stubborn streak. If he doesn't want to do something, it doesn't matter what consequences or rewards you put forth. The boy is not going to do it. Frustrating at home, but more concerning at school. His parent/teacher conference this morning was rough. Everyone agrees he is charming, and smart. The problem is that he is acutely aware that people want to help him. At school he has become lazy, and learned ways to get others to do things that he should and absolutely CAN be doing for himself. It's a fine balance. It's hard for me to hear anything negative about him, because I just think he is perfect. I look at how far he has come and I'm amazed. But I also want to make sure we are pushing him hard enough to develop to his full potential. After 2 years of being home, I'm hoping that he has learned to trust that we meet his needs consistently, because it's time to start pushing him to do it himself!

Mason, you've changed our lives for the better. You've completed our family. I love you.

A Day Playing in the Brook

My plan for Sunday was to climb Monument Hill. We used to do it twice a year, but our last trip was a bit traumatic (see the pics of Mason's eyes swelled shut). So the kids vetoed me, and decided we needed to spend the day in our backyard - specifically in the brook. There's plenty to do - catching fish, frogs, spotting the snapping turtle, paddling behind the beaver pond. . .

We had a blast - once again proving that nothing fancy is needed to have the perfect day.

April vacation!

With my relatively new job comes the bonus of having a lot of the same vacations as my husband and kids. We made good use of it this April by going on our first really big, really far vacation as a family of six. And in typical (for my family) fashion, we went along with: My mom, dad, sisters, brothers in law, nieces, and nephews! The itinerary included Busch Gardens in Williamsburg for two days, a day at the lodge, a car safari, and then time at my sister's house in Charlottesville. What a BLAST! Of course, it wouldn't be a real vacation without some mishaps. Ours included My folks forgetting their pre-purchased Busch Gardens tickets in Maine, and my poor hubby being so sick the first day at Busch Gardens that he laid in the car from about noon to eight pm. We told him to go back to the hotel, but I think he was hoping he'd feel better.

Myles feeding a Llama

Maddie and her Larakeet

Dad is feeling better - time for a swim!

Papa Jim and Rup

When you take your 8 grandchildren on vacation, you earn a margarita or two!

The kids all loved the little water park in the middle of Busch Gardens

The whole family - and Auri, our honorary member

Mason - completely overstimulated, but soooo very happy

Grooving down to some Irish Tunes

Me and the kids waiting to enter Busch Gardens

It was really amazing to get away with the whole gang. Something I am looking forward to doing more often. The kids were amazing even with the 21 hour drive down, and 15 hour ride back. No issues at all with anyone.

Happy Holi!

We celebrated the Indian Holiday of Holi and even had the gulaal powder. It absolutely is as messy as it looks, but it was SO worth it. The kids had a blast, and could not believe that this was mom-approved fun. By the end of it, Max had completely stripped down and was pink from head to toe. There is a picture of him streaking down the hallway, but I'll save that for blackmail when he's older :) My friend Amy took the pics, mainly to stay out of the mess - she thinks I'm absolutely insane for allowing this. Visit http://www.holifestival.org for more information on this fabulously fun holiday.

Rockets and Dances

Madeline and Daddy at the Father - Daughter dance. This year she stuck to him like glue and they danced together all night.

Before the dance

Daddy and Mason on the pond. Waiting for the rocket launch. Dan with his winter beard :)

Playing on the ice - Miranda, Myles, Max, Maddie

Myles has been so excited about these rockets. It's something my dad used to do with me, and I impulsively bought one for him. We've had so much fun putting it together, painting it, getting ready for the launches. A few days after this, Dan decided to use big engines and launch it from our front yard. Shockingly, the rocket flew WAY up, and got carried who knows where. Good thing we have another one to build. Lesson learned by Daddy - you need MORE not Less room with a bigger engine.

Condensed and Delayed Holidays

OK, I let it go way too long. Serious slacker on the blog, so here are the condensed holidays, mostly in pictures. One of the things I love about having a big family is all of the different celebrations to make sure we get to see all of our people. Thanks to blogger, they are all backwards in chronological order:

Grammy and Grampy's house with the cousins. Hensleigh is missing here. We attempt every season to get a decent picture of them all. . . attempt being the key word:

7 of the 8 grandkids

Watching the big sidewalk snowblower! The kids had a blast playing in the snow together. Fort building, shoveling, and snowball fights.

These are from my parents' house, when Jaime, Tom, and Fin got home. It doesn't feel like Christmas until they are with us:

Myles and Austin playing Rock 'em Sock 'em Robots

Fin Lovin' the new wheels!

These are from the Finley Christmas held every year at Aunt Darcy's. Yankee swap with recycled gifts, great food, and great company.
Mom, Aunt Karen and Uncle Will. Shockingly, my Mom is gambling ;)

Drew, Aunt Sal, Dan, Mason, and Uncle Dan

Christmas Morning, at our house! Maddie was the first one up, but not by much.

Maddie with her Red and Green stripes in her hair.

Myles finally got some Bakugans. I still don't understand them.

Max Rup with his fancy hat and Buzz Lightyear T-shirt that he would like to wear everyday.

Mason rocking out on Maddie's drum pads.

Madeline reading Christmas stories to two sleepy boys. She looks way too grown up in this one.

Mason LOVED the nativity set this year.
My parents bought us all tickets to the Polar Express. The kids absolutely loved it, and I'm pretty sure it will be a new tradition.

Maddie and Auri with their bells.

The Labontes. Max looks exhausted!

The annual trek to get a great tree:

With 4 kids it was hard to get them to agree. They would have walked around forever.

Daddy's shadow and big helper.

We had a fabulous holiday this year. There was no worrying about whether I had to work or not, no rushing back for a night shift, and we enjoyed the whole week together.

Continued Frustrations

Excuse my self-indulgent venting for a post. I feel like I've been a hermit for quite some time. I rarely even see my sister anymore, even though she's my best friend, and lives just 4 miles up the road.

Part of my frustration comes from the fact that I feel like I shouldn't be frustrated. Most parents of children with special needs are caught off guard, are not prepared for what they are handed. We knew going into this deal exactly what we were in for, and we jumped in anyway. And let me be VERY clear - I wouldn't change my mind ever. I cherish Mason so much, and cannot imagine my life, my family without him. HE is NOT the source of my frustration. My frustration is with "the system" that makes it so ridiculously hard to get what he needs.

I started a fabulous new job in October that I continue to love. However, working Monday through Friday makes appointments very difficult. This is made more difficult because none of them are close to where we live. That would be too easy. Mason's preschool is 30 minutes away, his PT is 50 minutes away. Any specialist we see is 1.5 hours away. We try to get 7am PT sessions which means that twice a week, Mason and I leave the house at 6am, drive 50 minutes to 1/2 an hour of PT, drive back 50 minutes to daycare, and then I drive back 50 minutes to work. I'm tired before I get there. We are still struggling with the orthotics issue. We have them. Our PT is happy with them, but the school's PT, and OT are not happy with them. Our PT finally said, just sign a release and have them call us to discuss it (I love her).

Tomorrow we will finally meet his case manager. She's been his case manager for 7 months, and has never met him. I finally demanded it. She wanted to simply jump to his IEP, and I just said that she needed to meet him first. I wanted her to have some idea of who she was working for, what our views are, and how amazing he is.

The IEP - ugh. This agency is not my friend. Their communication is just awful (indicated by the fact that it took 17 phone calls to reach the case manager). I was TOLD (not asked) that I had to attend a meeting on Feb. 28th to review his PT eval. I asked if there were other options, and was told no, that is the only time that everyone could meet, and I could do it by phone if need be. I called the PT who did the eval, and told her that it was just a horrible time, but that I didn't want to do it by phone, because I wanted to meet her. She said the SHE couldn't be there either, and they wanted her to join by phone. So, the only people AT the meeting would be several people who had NEVER met my son. PT called the office, and although the second date and time is even less convenient for me, at least the two people who actually know my son will be in the room. THEN, I find out (by recieving a letter in the mail) that this meeting is not to review his PT eval, this is his IEP meeting. And the date is not convenient for any of his current providers (speech, OT, teachers, 1:1), and, in fact, they were not even told about it. They only found out because the PT consults with the school, and mentioned it. So, again, we are planning meetings around people who have never met my son, while the people that work closely with him seem to not matter at all. I have been warned by providers that this particular office of the agency is notoriously difficult and not child-focused. So, I'm angry going into this meeting, and the case manager will hear all about it tomorrow.

In addition we have had Pulmonology appointments, x-rays, and modified barium swallows, an asthma diagnosis and 2 new meds (that insurance will only pay $2 of each $40 prescription). All of this eats away at time I should be at work. My employer is nothing short of amazing and patient with it all, but I feel terribly guilty, especially as a new employee.

I feel like my real full time job is to argue and fight, and negotiate, and it's really exhausting. BTW, still no wheelchair. He is heavy and awkward, and my back could really use a break.

Now, while I am complaining about all of this, Mason simply goes from provider to provider, with a big smile, doing anything they ask, and making amazing progress. He is super friendly, and not much bothers him. He enjoys pretending to call the police on people, usually if they won't give him his way. I admire him for his flexibility. The other day, my mom looked at him and said, "Mason, you just blow me away with how well you're doing." He grinned, blew a big puff of air in her face, and repeated, "I blowed you away." I love that kid.