Catching Up

I am overdue to post about recent events... was out of town for nearly a week (first, for a trip to the Centers for Disease Control and Prevention in Atlanta, then to a wedding in Vegas) so just trying to stay afloat. I'll post soon!

My First Blogger Award!

Thank you, thank you, thank you to Monica at Monkey Musings for honoring me with the Honest Scrap Award! I am especially grateful for being recognized by a blogger who is inspirational, fun, and, well, honest!

In order to accept this award, I must do the following:

1. Say thanks and give a link to the presenter of the award (done, and done gladly!).
2. Share "ten honest things" about myself (Ooooo, could be good!).
   
3. Present this award to seven other bloggers whose blogs I find brilliant in content and/or design, or those who have encouraged me.
   
4. Tell those 7 people that they've been awarded HONEST SCRAP and inform them of these guidelines in receiving it.

TEN HONEST THINGS ABOUT MYSELF

1. I love Sheridan more than I ever thought was possible. I guess no parent can explain it. But I would be happy if all I did all day, every day, was kiss that boy. And he would be so annoyed with me.
   
2. I love photography (okay, likely not a surprise given all the pics on my blog). I was a photography major when I first started college. I'll admit that there are times when I really wish I could pursue both an education and career in photography.
   
3. Old School Lisa: I've had my hair dyed nearly every color of the rainbow - and often shaved large portions of my head (like the sides and back/underneath - totally new wave, ya know). Also, I have 13 piercings in my right ear - most of them I did myself with a safety pin and no ice/numbing (back in high school). I only have 2 piercings in my left ear. Not sure why.
   
4. On some days I just burst into tears missing my brother Michael. It always takes me by surprise, but the pain is still as real now as it was when he died in 1998. I miss him terribly and truly wish that he could have known Sheridan.
   
5. As of late, two of my major food groups are: almond croissants and blueberry coffeecake. Yikes... putting that in writing hurts. Maybe I'll actually do something to change that now that I went public!
   
6. I think I might actually hate country music. I have not heard a single song, ever, that I could tolerate, let alone like.
   
7. I over-analyze children's songs. I try to understand their logic. And when I find inconsistencies, or phrases that are not specific/clear enough in their meaning, or when the logic is downright wrong, it irks me. But I suck it up and sing them anyway.
   
8. I was a complete slacker in high school (grades were ok when I cared enough to try - especially in math and art, and English depending on the teacher) - cared more about socializing and fun than school. I have no idea how that translated into my graduation with a doctorate 10 years later. Go figure. Me, a doctor. I think my parents are still trying to figure that one out, too.
   
9. My biggest fear, and I do mean my BIGGEST fear, is what will happen with Sheridan after Gary and I are gone. Sometimes I think it's silly to worry about something so far into the future, but every now and then I see examples of what I would not want for him. Or the reality of it just hits me out of nowhere. And I can't breathe - the fear is that real to me.
   
10. I never really understood the big deal about blogging... I used to wonder why on earth anyone would spend their time on it. Hmmmm... I guess I have my answer. I totally get it now :)
11. I secretly wish I could be a rock star... I love singing. Anything (except country - see #6 above). 80s synth pop, classic rock, broadway, hip hop, r&b, etc. But, alas, I will have to make due with my only fans: the people in the car who pull up next to me at a stop light and laugh as I sing and dance my heart out.
    

I PRESENT THE FOLLOWING BLOGS WITH THE HONEST SCRAP AWARD...

1. Dan @ Down with Oz & downtownds.com
   
2. CJ @ The T21 Traveling Afghan Project & Little Miss E
   
3. Lisa @ Bridget's Light
4. Chrystal @ One More, More Than One
5. Lisa @ Finnian's Journey
6. Adrienne @ Our Unexpected Journey
7. Jennifer @ Pinwheels

Special Needs Trust

Although Gary and I finalized this before I started blogging, I thought it might be of interest to some if I shared our experience setting up a Special Needs Trust...

Gary and I established the Lindsey Revocable Living Trust, a special needs trust, to take care of Sheridan after we're gone. Ugh... hate to think about that kind of stuff, but it's soooo necessary.

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Before I go any further, it's my obligation to tell you what you likely already know: I'm not an attorney, I'm not an estate planner, I'm not a banker, and I have no expertise in any of the professional arenas involved with estate planning. In fact, I do my best to explain what I have to share, but it's only based on my own understanding (an attorney might argue that I don't totally explain something here correctly). What I'm offering is simply our experience and the issues we felt were important for consideration for our family. I just hope that our experience might help others to start thinking about these issues if they haven't already. Ok. Enough with the "Lisa only barely knows what she's talking about" stuff...
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Gary and I had *finally* talked about putting together a will when I was pregnant with Sheridan. After Sheridan was born and diagnosed with Ds, we realized that a will was no longer good enough.

I'll admit, one of my biggest fears (that I still hold today) is what happens to Sheridan after we're gone. Having a child with special needs means needing to plan far into the future... often farther into the future than we can even try to imagine. Bottom line: we needed to make sure Sheridan has what he needs to live independently, semi-independently, or whatever his living arrangements will need to be, and that his health, social life, and overall well-being would be taken care of (to the best or our abilities).

We needed to establish a special needs trust - which, in our case, is a revocable living trust that has a special needs provision. In a nutshell, Sheridan is a beneficiary of the trust (which includes all of our assets - like property, life insurance, etc.) and it does not jeopardize his ability to qualify for public services like MediCal (which is California's name for Medicaid - why do we always have to be so darn original?), Social Security, etc. So, the money in the trust (like from our life insurance) can be used to pay for his housing, any medical needs beyond those he is eligible for through MediCal, transportation, etc. Just as important, that money does not count as income (this is really important, because if any money, our home, our life insurance, etc. were left to Sheridan in his name, it would all count as income/assets for him and he would be disqualified from public services because he would "make/have too much money").

And let me be clear, when I'm talking about estate planning, you might be thinking, "We don't have an 'estate' - we don't have much at all." Well, welcome to the club. We have a negative net worth (not something that's pretty to see in writing from a financial planner, let me tell you). So, technically it looks like - right now, anyway - all we have to give is a big fat zero. But it doesn't matter. One day our life insurance will kick in, one day in the very far-off future we'll (hopefully) pay off our home, or one day our parents (Sheridan's grandparents) might want to leave him some money when they die (more on this specific issue later).

My point: you don't have to actually have a lot of money or property to set up a trust.

Okay, so what were the most important things we needed to think about when creating the trust? Here's a Top Ten list of some of the bigger ticket items (in no particular order)...

1. We wanted the trust to be revocable, because it means that we can change it, or cancel it, at any time (we will undoubtedly need to change it many times in the future as our situation, our family, and Sheridan's needs change).
2. How were we going to "fund" the Trust? Well, honestly, right now it's not worth much at all (remember our negative net worth???). But we transferred the title of our home into the name of the Trust (so once it is paid off that becomes an asset). We changed our bank accounts to be in the Trust's name (keep in mind that both Gary and I are "trustees" which means everything operates the same way as before - but if something happens to us, any money in our bank account will go to the Trust, not to Sheridan directly). We each named the Trust as the contingent beneficiary on our life insurance (so my life insurance goes to Gary first, but if he's not around it goes to the Trust). Those are just some examples of how we common folk (a.k.a. not rich people) fund it.
   
3. We had to think about guardians and contingent guardians for Sheridan. This was a big decision, not just because we were trusting our child to somebody, but because it is a very big responsibility for said guardians. And, you have to think about all kinds of possibilities. For example, if your selected guardians are a married couple you have to think about the possibilities of divorce, or one of them passing away. If they get divorced, which one of them would you like to be the guardian? Or would you bypass them for the contingent guardians? Basically, you have to set priorities for all possible situations and lay out precisely how you would want the guardianship to happen. In the end, we chose FIVE different guardianship scenarios (the primary guardianship and then four back-up scenarios that run through various possibilities with the primary couple and the contingent couple). You don't have to be that specific, but it helped us have piece of mind that Sheridan's guardianship would (most likley) happen in a way we wanted.
   
4. We had to think about whether or not we wanted some of the Trust's money to help the guardians. For example, what if the guardians' house is too small and they need to buy a another house to help them take in Sheridan? Or what if their existing house was ok, but they need to do some remodeling to accommodate his needs? Did we want the guardians to have access to money in the Trust to help them do that? And if so, what contingencies did we want to place on those funds (e.g., if they purchase a new home, and money from the Trust is used for 20% of the purchase price, the Trust owns 20% of the new home - so when the house is sold, 20% of that money then goes back to fund the Trust).
5. Who do we want to oversee the Trust? You can appoint guardians, executors of the Trust, etc. and they can all be different people. Or they can be the same people. To the best of my understanding, the executor oversees the Trust (including how payments are dispersed, how funds can be used by Sheridan and the guardians - including the housing issues I noted above, investing the money to help keep the fund going, etc.). If the guardian and executor are the same person(s), you are appointing them to oversee themselves. You better really trust them. Which, in our case, we do. Why else would we trust them to care of Sheridan? But many disagree with our decision and prefer having more "external" oversight.
6. How much compensation did we want to provide the executor? Our attorney told us that being in charge of a trust is a big job, and nobody would do it without compensation. So, do you want the executor to receive 3/4 of a percent of the Trust for their efforts? What about 1/2 a percent? Or a fixed amount each year? No matter what, you have to decide if you want to provide compensation, and if so, how much.
7. What about other children? Right now, Sheridan is our only child. So, we left standard language in that would split the Trust equally among all our children. Obviously, this means if we have one other child and we do not change the Trust, Sheridan gets 50%, and child #2 gets 50%. However, once we have other children, and once we have a better understanding of Sheridan's needs (this is a prime example of the type of changes you might need to make and a revocable trust comes in handy)... we might determine that Sheridan really needs more than "his share" of the money. So, we might go back and say Sheridan gets 60%, and children #2 and #3 get 20% each. The point is: you have to determine exactly how you want this to happen (and make sure you understand the laws in your state so that you know what will happen to the funds if you don't specify anything).
8. Do you want to include a Letter of Intent? We all know the ins and outs of our children. We all have special things that we do with our kiddos, and might have specfic requests for our child with special needs. Or, maybe your child's daily schedule is really precise and very important to every day functioning. Or maybe your child has special nutritional needs. Or takes special medications, vitamins, etc. Or maybe s/he has allergies. Or maybe s/he has a special stuffed animal that MUST stay by his/her side at all times. Or maybe... you get the picture. When you think about it, if you (and your child's other caregivers) were to disappear tomorrow, how would anyone know exactly how to care for your child every single day? Even the mundane details matter to our children, and a letter of intent helps everyone understand what your wishes are for your child. Key word: wishes. It's important to understand that a letter of intent is NOT legally binding. It just provides guidance that you think the new guardians will find useful - or things you really hope they will do (e.g., feed your child only organic food). The letter of intent is NOT part of the Trust, it's a separate document that can be kept on file with the Trust (e.g., in your attorney's office and with your copy at home or in a safe deposit box). The letter of intent will need to be udated regularly as schedules, needs, etc. change... but is an option for those parents who feel the guardians will need some specific guidance.
   
9. What about all the other "stuff" that you've accumulated? You have to decide what to do with it... typically a good old-fashioned will is included in the Trust. It's for everything else that's not valuable enough to "fund" the trust. For example, what will happen to your books, furniture, cars, jewelry (assuming you don't have any Hope diamonds lingering around the house), art, etc.? You can simply roll it all into your Trust (meaning any beneficiaries will determine how to divvy it up), or you can specify who gets what.
   
10. What if grandparents (or others) want to leave your child money? We learned that anything (with monetary value) people want to leave to your child with special needs should be left to you. If they leave it to the child, it goes in their name. Which means it becomes their property or money. Which means it counts as income. Which means a very thoughtful gift just disqualified your child from social services like MediCal and Social Security. Instead, everything should be left in your name (assuming you are still alive - I know it sucks to talk like this, but we've got to be thinking about it) - if it's in your name it becomes part of the Trust and when you die... walaah. The property/money now goes to the child as part of the Trust without it counting as income. Our attorney also explained that if anybody makes a gift to the Trust itself (before you and the other trustee die), then the special needs portion of the Trust automatically kicks in (so now you have to oversee the Trust, yadda yadda, instead of going about your business like you do now). Now, I have to admit, I don't think we got a great explanation as to why this was bad, all I understood is that we want to avoid it. Things in your name become part of the Trust (remember, you either outline specifically how it will be funded - so you could add this gift, or everything else just rolls into it based on your will - so any random savings account from your college years that still has the minimum $25 balance will roll in, and so will this gift).
    
11. What if you are all gone? Okay... even harder to think about, I know. And I said this would be a Top Ten list, but it goes to eleven (just for all you Spinal Tap fans out there)... So, what if you and your children are gone? What happens to the Trust then? Well, that partly depends on what state you are in, or what you lay out in the Trust. In California, if you don't specify anything, it automatically goes to next of kin in equal shares (first to our parents, then our siblings, then our siblings' children, etc.). Now, if the thought of a specific family member suddenly inhereting your life isnurance makes your skin crawl, you can outline precisely what you want (for example, X% goes to Charity A, Y% goes to cousin Melba, Z% goes to neighbor's child Esperanza - you get my point here). But, keep in mind that if all those people are gone by the time the Trust is ready to be divvied up, it then goes to their next of kin and so on). So, something to think about.
    

We had to think about a lot more than this, but these were the biggies. It took us six months to finalize it... not because it was a long legal process (truth be told, it's pretty clear that attorneys just use a template and you plug in or change anything you want - which saves you some money), but because it was hard to make some of the above decisions.

One-Word Wednesday

Indeed...

Ode to the Frohawk

Those curly locks. Those beautiful curly locks!

Sheridan had his first big-boy hair cut last Friday. I did better than I thought I would... I teared up before the appointment (driving on the way there). And only winced slightly during the appointment.

He looks haaaaaaaandsome! I was really worried that we would regret cutting his hair, but Gary rightly pointed out that his hair had become completely unruly.

"The boy's kitchen is a mess!" is more precisely what Gary said to me.

Translation: the hair at the back of Sheridan's head was a big cloud of tangled, knotted mess. (Don't feel bad if you needed the translation... I know I did.)

Let us reminisce... here are a few BEFORE pictures:

Sheridan truly was born with a mohawk (hence, Gary called it the frohawk). A couple weeks ago, the frohawk was in full effect when he woke up from his afternoon nap.


Penny immortalized his curls for me.



He did really well during the haircut (LOTS of pictures here - thanks to Nanny Airplane!). Miss Julie cut his hair (she's a work-at-home mom who turned a portion of her garage into a salon - you'd never know it was her garage if I didn't tell you!). Sheridan took his time getting to know Julie first (after all, you don't just let somebody come at you with scissors without sizing them up!).


And then Julie went to work...


Ok, I knew his hair was long when Julie had to bust out with a clip to keep it out of her way.


How long, you ask? This long...


So, this begged the question... how much do we take off the top? I went in to the appointment saying, "We're not touching anything on top. Everything on top stays."

As Sheridan's new cut started to take shape, it became apparent that some of the top would need to go. Julie was nice enough to do it in increments for me (many, many small increments). Here is the last picture of his long curls in their full glory (well, she combed through them so they looked like one big curl - but still cute!)


I think even Sheridan winced when she cut into the top curls.


But he thought the clippers tickeled when Julie used them to shape up the back and sides.


"The lip" only came out once or twice, and he never cried...


And now... [drumroll here] the AFTER pictures:



He looks like such a little boy!

But as you can see, we opted to keep some curls on top - there is NO WAY all those curls were coming off!!!!

(Now, thank you for putting up with so many pictures... first baby, first haircut... you knew it would be out of control, right?)

Blogger Playdate

Malea, with her mom Chrystal and dad (known affectionately as BD on her blog), came from Monterey, CA to visit with us Sacramento bloggers. We had so much fun, and it was great to connect in person and see Malea live and in action (and, oh yeah, talk amongst us adults)...

On the Scene:

Gabby was there with her mom Sheree, dad Nguyen, and big bro Cam. She was just waking up from a nap, so she was Little Miss Serious as first.


But after some contemplation...



she decided we were enough fun after all :)


John Michael, with mom Monica and sisters Anna and Greta. He arrived at the park with his (very brightly colored) swim suit on - unfortunately, the park's toddler wading pool hadn't opened for the summer yet (budget cut backs I'm guessing, but I'm anxious for it to open June 18th). Sheridan loved John Michael's trunks - every time they were in arms reach, Sheridan would reach out to touch the sharks.

What's that you ask? How big is John Michael? SO big! (I never get tired of that!)


At this point, nearly all of my pictures of John Michael are action shots so he truly tests my photographic abilities.


He has turned into quite the climber. Um, did I mention he likes to climb on me?


And a big thank you to his sister Anna who inspired his laughs...


Malea. Sweet, sweet Malea. She walked right up to our group and fit right in. She showed us her dance moves... and those smiles. Oh, those smiles!



She and Gabby checked each other out...


and Gabby decided she just had to hug Malea... Look at that lunge!


And John Michael climbed on me some more.


Sheridan was with me of course.


[I have to take a moment to come clean. Admit it to the whole (blogging) world... Sheridan has had some rough playdates over the last month or so. Rough. For whatever reason (and trust me, I've been trying to find a pattern to help him overcome this), when other babies want to interact with him, there is a 50-50 chance he will flip out on them. I mean just scrunch up his face and have a good cry. It's like stranger danger with babies/toddlers (and let me be clear that he does this with adults, too, but... babies?!).

About 6 weeks ago we had a great playdate lined up with Wesley and his mom Natalie (we were in the same Bradley Childbirth class and have remained friends). Within minutes of their arrival, Sheridan lost it. Little Wes made a sweet sound, a happy sound, kind of like a baby saying hello. And Sheridan went over the edge.

I tried everything. Holding him, helping him see that Wes was a nice baby, singing, taking Sheridan in the kitchen with me while Wes played in the living room, Natalie and I each held our respective babies on our laps... nothing would get Sheridan to stop crying. We decided to put the boys in our wraps and walk to the park.

Sheridan LOVES to be outside. Loves to be in the wrap. Loves to go for walks. He cried. The whole time. As soon as he might start to settle down, he would whip his head around to look for Wes, and as soon as he saw him, he'd start crying. Now why do babies do that? They know something is upsetting, yet they seek it out?!

So, all told, Sheridan cried for well over an hour. Nothing I did helped...

Back to this current playdate with Malea, Gabby, and John Michael: Sheridan still cries on occasion (especially when John Michael excitedly says "eeeeee!" or a child screams with excitement/joy/frustration). But he now recovers much more quickly than he used to (especially if I break into song - the boy LOVES music and it's the best calming tool I have in my arsenal). His crying now only lasts a few seconds, then he's back to playing. But it happens repeatedly throughout the playdate (and the poor parents have to endure my singing).

The worst of it is, I never know when it's going to strike. And I always feel bad that playdates can go downhill very quickly. I just don't know what to do.

I've been reassured that this is normal. That it's just a plain ol' baby phase. That he'll outgrow it... I hope he outgrows it soon. That's why I continue to do playdates (although sometimes I think other moms will start to cringe when they know we're coming - all that baby crying can start a chain reaction among all the kiddos!). I figure the more often he interacts with other children, the sooner he'll outgrow this phase. If you have any suggestions, I'm all ears!

Okay, enough of that. Back to the park...]

Yep, John Michael climbed on me some more. I have to admit, I enjoy being a jungle gym. Especially when this is the view:


The whole gang had a blast!


A big thank you to Chrystal and her gang for making the drive from Monterey to come visit us!

Oh yeah, and you can check out a picture of us moms who were there, too, by clicking here :)