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.

Christmas Eve with the Coombs Family

The Coombs family has been celebrating together on Christmas Eve at the same house at least since I was born. We're quite a gang. I can't remember a time when there was a lack of tiny ones - it seems someone is always at that stage. Kids exchange names, and adults do a spirited yankee swap.

Nate and Aisla

Some of the gang

Myles and his Spy Kit

Max - looking a little tired

Mason's signature grin

Maddie in her "glasses" with her reindeer

Molly, Brett, and Aunt Dawn

Bryce and Charlie

Mason and Papa Winnie

Madeline and Papa Winnie

Max enjoying his Christmas Eve Pancakes. Licking up Holly's strawberry sauce.

Frustration

This week has left my quite disgruntled, and feeling like nothing is moving fast enough. For those of you who have been through the adoption process, it's like when you rush and rush to get the paperwork done, and then no one else has that urgency and you are forced to sit and wait for things to happen.

We have been attempting to get a wheelchair for Mason since August. It's not that we don't think he'll ever walk, but he's very heavy, and I can't carry him everywhere anymore. He hates a stroller because he feels all scrunched up, and the joggers force him to lean back, which he is completely uninterested in. He will probably always need a wheelchair for long distances, and it will certainly be useful for school. We switched companies because the first folks we were with were essentially useless. They were rude, gave us no options, and our phone calls went unreturned for up to 1 month. Completely unacceptable. We are now with a company whose rep. has been lovely to deal with. We felt like we had options, that he listened to us, and understood what we wanted. He even got a chair for Mason to try - a chair that we were interested in. So that is progressing, but is probably going to take another month or so to actually get the chair.

We have finally ordered orthotics for Mason. In my opinion it's about time. He wants to be on his feet now, is pulling himself up all the time, and prefers to be in his gait trainer at school. But again, this has been in the works since September! The company that his orthopedic guy faxed the prescription to never called us, even after I left messages. So our PT is also an orthotist and got him all measured. We were supposed to have them within 7-10 days. That was nearly a month ago. I don't think it's anyone's fault, it's just one more thing that is taking longer than we thought.

The PT eval at school was done after repeatedly reminding CDS - "it's in his IEP, you need to make it happen." They didn't want to pay for an initial eval to begin his 1/2 hour of consultation with the school each week. But it did happen. Now, I'm trying to get a hold of the PT to talk to her about the results. It's been 2 weeks, and we still haven't connected. She's on the road a lot and I can't answer my phone between 11:30 and 3. So it isn't really anyone's fault, but it's maddening!

Another frustration - we got a letter from his school stating that they forgot to get consent for psych testing that had already occurred in the fall. Would we please sign consent now. Seriously?!! Would have been nice to know that someone was evaluating my kid, and to have had some say as to who did it, or at least be able to do my own research on their provider. Not happy about this.

And the kicker this week was the eye appointment. When we accepted his referral, Mason had a clearly crossed eye. Although it has certainly improved, it still goes crazy frequently, and at our last appointment we were told that this is what causes him to constantly tilt his head back. We initially took him to a local eye doctor, who told us that he didn't see anything wrong. REALLY?!! When we had his speech evaluated, his speech therapist was very concerned about it and told us to get a second opinion. We went to a pediatric opthamologist who told us that he had "A shaped strabismus" and would need surgery, but wanted to wait until he got a bit more settled here. Time and time again we are asked by providers "what are you doing about his eyes?" He recently had a PT eval at the school he attends, and when my mom picked him up, that was the first question from the PT. We had that appointment this week. I took all morning off from work to drive down there expecting to finally get something set up to take care of this. I expected them to dilate him, because with Mason, I feel like that's the only way to get a good reading on it. They didn't. Instead they wanted him to point to these teeny dots on a flashlight (hello! he doesn't really have great fine motor skills). Then they wanted him to identify these abstract black and white photos of everyday objects. He's a concrete guy. The abstract thing didn't work for him. Lastly, the doc was trying to get him to follow that little pen light. Instead of talking to Mason and asking him to follow the light, he kept flicking this little pig thing around and expecting that to grab his attention. Mason could not have cared less, and I don't blame him. I was most irritated, because I want Mason's providers to actually show an interest in him. And there was none shown. He never spoke to Mason on any sort of level and I felt dismissed. He said that he didn't get a good reading, that he didn't want to do surgery right now, nor did he want to try glasses or patching. He stated that his head tilt looked more to the left today (I have no idea what that meant, and seriously, he was with Mason for like 2 minutes!) So we wait another 6 months before going back.

It's not that I want my child to have surgery, but I do want something to be resolved! He's got enough challenges, so if we can fix something that may affect his fine motor skills, his posture, and adds to his struggle, let's do it already! I'm sick of wating for everything to happen!

I just felt like I did a lot of running around, calling around, and got nothing accomplished at all. So this weekend, I'm forcing Daniel to help me clean the basement. That way I can feel like some progress has been made on something in our lives :)

I promise a happy, picture filled, holiday post soon!

My big 4 year old!

Max woke up this morning and said, "Yay, now I'm a full grown donkey boy!" I have no idea what this means, but he's a funny kid, with a great smile and sense of humor to match. He's still small, but seems to have sprouted the last month or so, requiring all new pants to wear. I love that he has nicknames for everyone: Myles is Foo Foo, Maddie is Sissy, Dan is Dan Dickens. Too cute. LOUD, but very sweet and endearing. He still carries all his blankies around, and his favorite color - PINK! He is newly obsessed with Buzz Lightyear, hence the birthday costume. He was so thrilled, and kept on saying, "I'm an autobot!" I think he's confusing his characters :)

Seriously, this kid just lights up the room. He is so smart, funny, and loving. This time of year, with all of the Gotcha Days, Birthdays, and Holidays, my thoughts always turn to my boys' birthfamilies. Max is very aware of his birth mother, and wants so badly to meet her. When I look at him, I can't help but think of what she might look like. I always think of her as a petite woman with birght eyes and a stunning smile. I hope that she smiles often, and has some level of knowledge that her son is happy, amazing, and loves her from afar. I hope that someday I can be there when they meet.