The Disabled Military Child Protection Act

Upon retirement the military member may elect coverage in the Survivors Benefit Plan (SBP). This coverage can be for a spouse only, spouse and children, or children only coverage.

When Joe retired we discovered that we couldn't elect this coverage for Kayla and have it designated to go to a special needs trust. The law stated it could only be designed to a person and the Defense Department's interpretation of person did not include a trust.

As parents we want to provide for our childrens' future as best we can and not having this option to designate the payments of the SBP to go to a special needs trust for Kayla was frustrating. We could still chose to designate Kayla as a beneficiary if we wanted to, but we would have to be very careful with how much could be allotted to her - any monthly payment she would receive could potentially affect her eligibility for government benefits programs such as Medicaid, SSI, and housing programs.

Individuals with disabilities can not have more than $2000 in assets before it affects their eligibility for those programs. I've often been frustrated by the constrictions on all of this. Isn't the goal to help Kayla be as independent as possible? How independent can you be if you're restricted to $2000 in assets? If we're able to help provide for her future so she doesn't have to rely on all of those government benefits is that really such a bad thing? I don't think it is, but it's unnerving to think if we do something as simple as designating her as a beneficiary we could be jeopardizing her chance at programs she may truly need and could benefit from.

Around the time of Joe's retirement I read there was legislation being introduced, or had been introduced, to allow military members to designate SBP payments to a special needs trust, but when it came time to sign that paperwork there was no law in affect. The person at the office where we had to fill out the SBP paperwork hadn't heard anything about it.

Joe signed the paperwork for his SBP elections in November. In March I read an article (New Law Eases Burden for Special Needs Military Kids) that the President had indeed signed The Disabled Military Child Protection Act (I wish they would use People-First Language like The Military Child With Disabilities Act) which would allow the military member to have the SBP be paid to a special needs trust. This was signed in December (it figures!).

Hopefully the Defense Finance and Accountability Service will consider having an 'open season' for retired service members to allow them to elect the SBP for a trust.

10 Things I Miss About the Military

Or a more accurate title would be "10 Things I Miss About My Husband Being Active Duty" because we are still military-connected, and he's the one no longer active duty, but that just seemed too long of a title.

In no particular order here are 10 things I miss about being an active duty family:

10. Basic Allowance for Housing, or BAH, in his paycheck. This allowance is based on where you live, pay grade, and dependents so it's highly variable from member to member. It is a nice addition to your pay (helps to offset the cost of rent/mortgage). When looking for a civilian job remember to include BAH in looking for comparable wages.

9. Along with BAH military members also receive Basic Allowance for Subsistence. This is meant to offset the cost of meals for the military member only. A few hundred dollars a month added to the paycheck is always nice. Just another thing to remember when calculating civilian pay to make up for that loss of BAH & BAS.

8. Being able to claim your Home of Record state no matter where you are stationed can be a big benefit. Joe's HOR does not tax active duty pay.

7. There is an active duty military exemption on personal property taxes in SC (I don't know how every state works). When our vehicle taxes (well over $500 on our van alone) were due each year, I filed for the exemption and we didn't have to pay those taxes. There will be no more exemption when the bill comes this year and that is an adjustment!

6. Some military discounts are only available to active duty military and not retirees. One example is the Waves of Honor (formerly Here's to the Heroes.). Waves of Honor is for the active duty member and up to 3 dependents to get complimentary tickets to any one of the Sea World Parks & Entertainment park once a year. Another example is a local private Catholic school has a reduced tuition rate for active duty military families.

5. Annual Leave. This will be one of our biggest adjustments to retired military life and being in the civilian workforce. Military members get 30 days of annual leave which can be carried over; Joe has always had his 30 days of annual leave each year plus up to 30 days of 'use or lose.' We've never had to carefully plan out vacations or days off - he's just always had plenty of leave for any trips we took. Then there is the time off around the holidays. Not every military branch is the same, nor is every duty location the same, but overall commanders typically have "4 day holiday weekends" so Joe's been off on some Fridays before a Monday holiday. Time off around Christmas usually goes to minimal manning. Joe has usually had the week of Christmas off (unless we traveled out of area then he would take leave). I'm well aware this is not how it works in the 'real world' and that he will not have over 30 days of leave each year. It was just something we had become accustomed to that I am going to miss.

When he was active duty he didn't have to take leave to go to an IEP meeting, or if I needed him to come home earlier to get the kids off the bus because I had to be somewhere else. There was a lot more leeway because they aren't paid based off an 8 hour clock in and out schedule.

4. The Air Force Respite Program. This respite program is for active duty families who are enrolled in The Exceptional Family Member Program (EFMP). While we didn't use respite as often as we could have/should have, it was nice to know it was available to us.

3. We still have our Tricare Prime health benefits, but retirees pay a medical premium and have co-pays for appointments with civilian providers. There are no co-pays for Tricare Prime while active duty - even for civilian doctors, surgeries, procedures, etc. The only times I've paid out-of-pocket were for prescriptions (when filled at an off-base pharmacy), chiropractic appointments (aren't covered by Tricare), and some dental work. Yes, I know, welcome to the real world! I understand having co-pays is part of the civilian life. See above ref: Leave. Not having any co-pays for pretty much all my life will now take a little adjusting to and is something I miss about being an active duty family, that's all.

2. Permanent Change of Station, otherwise knows as PCS. Yes, in some ways I will miss not having any more PCS orders. I will miss not seeing a new base, or living in a new state. Not all assignments are desirable, but that cliche of "every assignment is what you make of it" is true. The first time I drove to Holloman AFB in Alamogordo to visit Joe after his return from Korea, I cried. I cried thinking about moving from beautiful Colorado and my view of Pikes Peak from my apartment balcony, and my job at the Center for Character Development overlooking the Cadet Chapel - and I cried. I didn't want to leave that area and move to Alamogordo - to a desert landscape where everything was brown and drab looking. Holloman couldn't compare to the Air Force Academy (I felt no assignment would compare to the AFA though; it's simply a beautiful base to be stationed at), but Holloman has White Sands. Where else can you go sledding in the summer? I also met a great group of friends at Holloman. The assignment is about the people and experiences, not the location.

In some ways having the military tell you where you're going to live next is just easier, because you have no choice. Being retired and having no hometown to move back to and being able to live wherever we want is stressful in its own way. It's overwhelming to think we can pick anywhere in the country and just move there, but there is so much research: employment, housing, school, services, adult services etc etc and I just don't know where to begin that research. So we're staying in SC for the time being, mainly because Joe got a job (yay!) but it would be so much easier if the military said "You're moving here now."

1. The uniform. All of my life the man of the house has worn the United States Air Force uniform (even though the look of that uniform has changed over the years) and it's odd not seeing Joe wear that uniform anymore. (Now he's faced with the dilemma of what color shirt to wear each morning!) I miss being that active duty family. I miss belonging to that ... even though we are still a military family, we are now a retired military family and there is a subtle difference in that.

 

The Challenge Coin

During his retirement ceremony Joe gave Kayla and me roses. I haven't been to many ceremonies, but I think that's a pretty traditional gift to present to your wife and daughter(s). But what do you give to your son? Especially a son who is only six years old?

I had no idea what Joe planned to give to Lucas, but I was sure he would think of something.

He presented him with one of his Military Challenge Coins.

A brief explanation for those not affiliated with the military: military members receive challenge coins for a number of reasons. The coins are minted with unit, squadron, command organizations and symbols and usually a motto. The coins are collected from various duty locations, TDYs, schools, deployments, inspections, promotions etc. Throughout the course of a 20 year military career a member will receive many, many coins.

Tradition is you carry one of these coins with you at all times ... because someone in the military can always 'challenge' you (typically at a bar) to pull out your coin. The last person to do so, or the person who doesn't have a coin, has to buy a round of drinks. I'm not sure how much that tradition is still used in today's military, but I'm sure the majority of military personnel have a coin in their wallet or purse.

So Joe gave Lucas the coin he was given when he received his line number to be promoted to MSgt. It was a special moment between father and son. Lucas doesn't yet understand the significance of receiving the coin, but he will one day.

Our days as a military family might end with Joe - who knows if Lucas will carry on the tradition. I asked him several weeks ago if he might join the military like his dad.

He thought about it for a few seconds and said, "Probably not."

When I asked him why not he said, "Because I have too many other things I already want to do!"
 

His Presence Was Missed

In the months leading up to Joe's retirement I thought often of my dad. Our immediately family - his mom, dad, father, half-brother, and my mom, step dad, sister, brother and his wife and son, would be there. So would his great aunt and uncle.

I knew my dad would've been there to celebrate this momentous occasion, and I knew I would miss him not being there with everyone else gathered around us.

Both Joe and I come from a military background. The military is how we met. We were both born at military locations, our dads were stationed in Germany where we met in high school, and they both retired after 20 years of service in the Air Force.

It would have meant a lot to me, and I know to my dad as well, if he could have been there for Joe's own retirement.

I thought about ways I might be able to somehow include my dad in that day. Have a chair marked 'reserved' for him? Give something military-related that was my dad's to Joe as a retirement gift? The problem was I don't have anything of my dad's like that.

The other problem is this day wasn't about me, or my dad, or the fact that he wouldn't be there.

It was about Joe as it rightfully should have been. This was about the culmination of his 22 years of Air Force service and the focus needed to remain on that fact, and on Joe. I didn't need to bring the absence of my father to this day of honoring Joe.

So in the end I didn't do anything, or say anything, I just internalized it and thought off and on about my dad.

On the morning of the retirement I had to go on base to sign some paperwork. Driving back home Luther Vandross' song Dance With My Father came on the radio. This song was on the radio shortly after my dad died and I remember being overcome with emotion. I've heard it only one other time between that day and the morning of the retirement. That morning of the retirement it was like a little gift to me, I needed to hear it since I had been missing him and was thinking of him.

Then there was the retirement ceremony and seeing my brother all dressed up in his Army uniform - the last time I saw him in that uniform he was saluting our dad's casket. And my brother looking so much like our father.

At the beginning of the ceremony we all stood as the chaplain said a prayer.

A few sentences in to his prayer, Kayla leaned into me with her head on my side. I gave her back a couple of strokes and then she put her arm around my back. I kept my arm draped on her shoulder. She put her other arm around the front of me. That was unusual for Kayla to do. I looked down at her and she looked up at me and solemnly whispered,

"You miss Pepere?"

How did she know? I thought to myself. How. Did. She. Know?

I wasn't thinking of my dad during that exact moment, I wasn't upset at that exact moment, so how did she know?

I hadn't said anything to anyone about my dad.

I guess in some way he was letting me know that his presence, while not physical, was there after all.

Marine Corps Marathon

Joe ran in the Marine Corps Marathon today. It was his 3rd race this year after running in the Air Force Marathon and the Army 10 Miler.

This was his 4th marathon (ran the Air Force Marathon 3 times), but the first time we've been there to cheer him on and meet up with him after the race. For one, driving to OH where the Air Force Marathon is held is a few hours longer than driving to DC for the MCM. For two, my mom lives in MD so bonus of going to this marathon was visiting and staying with grandparents.

We had to take the kids out of school on Fri and Mon for travel days, but I'm so glad we did. It was great to be able to see Joe running and give him encouragement and then to greet him after the race.

We saw him at about mile 22 and then we dodged runners as we ran across the street and met him on the other side as that part of the route looped around. I didn't realize that I stopped the video so quickly each time we saw him, but here are a quick few seconds:



The kids also had a fun time cheering on the sidelines for the runners as we waited to see Joe. They liked holding their hands out for high-fives and got a big kick out of each time a runner slapped their hand.

Congrats to all the finishers in the MCM! It is so inspiring to watch all those people running 26.2 miles. It makes me wish I could be as dedicated, brave, and persistent at running like they do. But I hate running. I do. I simply have no desire to run, and run, and run for 26.2 miles. But I am in awe of all those who do run!

 

For The First Time In Twenty Years

Yesterday Joe did his final outprocessing on base. He put his uniform on for the last time; although I told him he could always dress up as an Airman for Halloween!

In honor of that being his last official need to wear his uniform, I took liberty with the lyrics/tune of First Time In Forever from Frozen and came up with this:

Cause for the first time in twenty years
He's not putting on a uniform
For the first time in twenty years
He'll be wearing civvies home

For the first time in twenty years
There'll be no hats, no hand salutes
For the first time in twenty years
No military-issued boots

No random urinalysis
No training for annual PT tests
Sleep in, don't shave, let his beard grow
A retiree, everyone will know

His hair can grow out past his ears
He outprocessed yesterday
Cause for the first time in twenty years
For the first time in twenty years
He'll be home all day!

Military Retirement Ceremony

I still can't believe that Joe is now retired. Ok, technically he's still on active duty, but he's on terminal leave until 1 Jan, when his retirement is official-official. But for the most part, he's retired after the ceremony! It hasn't quite sunk in yet, and probably won't for a little while, it'll just feel like he's on a long leave. I have more to post on that, but need to gather my thoughts.

It was a very nice ceremony and we were thankful our families could make it in from out of town.

One thing that made it even more special was my brother officiated the ceremony. It was so nice and memorable to have that family connection. Another memorable thing was at the end of the ceremony the Air Force Song played and everyone sang along - including my brother. What made it memorable (and something you don't see that often) is my brother is a Captain in the Army and there he was singing the Air Force Song along with everyone else. He did serve in the Air Force for almost 8 years, so it was cool that he remembered the lyrics and could join in. I don't think you'd find that many Army guys who could sing the Air Force Song.

One of Joe's many certificates

 I got a couple spouse certificates

His shadow box. 

Neat story about the flag is it was his grandfather's flag (retired Navy), and then it was supposed to fly on a mission to Afghanistan and long story short - the flag ended up going around the world.

I gave the kids silly string to surprise Joe with when he got home. They enjoyed that!

He Served 22 Years

22 years ago Joe enlisted in the United States Air Force.

Today, he retires.



Kayla and Lucas say "Happy Retirement Day, Dad!"
 

Thanks for your service honey, I'm proud of you and even though I'm not ready for this retirement phase of our lives, I stand beside you and support you. Congratulations on 22 years of dedicated service to our country.

Retirement Tour Marathons

It's official.

My husband, Joe, is retiring from the Air Force after 22 years. How I feel about that is a post for another day.

This post is about his 'retirement tour' - the races he'll be running in by the end of this year.

He registered to run in his third Air Force Marathon and I half-jokingly said to him that he should do a 'retirement tour' and make it military-related since he's retiring from the military.

So he took up the challenge.

He'll also be running in the Marine Corps Marathon and the Army Ten Miler.

For each race he will also be running for Research Down Syndrome - as he's done in the past. RDS Mission is to "...fund and support scientific research directed towards the development of safe and effective drug therapies that will improve memory, learning, and communication in persons with Down syndrome and address the increased likelihood for Alzheimer's disease."

Any donations to Joe's fundraising page is much appreciated.

Fundraising Websites - Crowdrise
 

Story From Our Neighborhood

Earlier this summer we were walking back home from the end of our block. Kids were outside playing and Kayla stopped to play with a few girls who were jumping rope with a large rope. Each girl was on the other side of the street, the rope being long enough, and one taking turns jumping.

I stayed on the sidewalk watching, and waiting, for Kayla. She took her turn holding the rope, but she's not as coordinated as the other girls. She tried to swing her arm in time with the girl on the other end. They were patient with her and attempted a few jumps when they could.

I was standing by a vacant house when 3 cars pulled in to the driveway. I remember thinking to myself, "Wow someone is actually coming by to look at that house." The for sale sign had been in the yard for months.

A few days later there was a moving truck in that driveway.

On one of our walks we met 2 of the 3 girls from the family. A week or so later I met their mom.

The mom told me that the day they were looking at the house she saw the girls playing outside. She said she watched them play for about 30 minutes. (She and the realtor were outside for several minutes waiting for her husband to arrive). She continued to tell me that she watched the girls with Kayla; she watched how they treated her, how they were with her, how they included her, how all the kids on the street were just out playing.

She said, "After watching them with your daughter I said, yep, this is the house, the street where I want to live." She doesn't have a child with a disability, though her youngest is entering Kindergarten with an IEP for speech.

I wouldn't say that Kayla has any "BFFs" on our street, but there are a lot of elementary-aged kids on our street. For the most they are friendly and accepting and including. That's the type of community I want for Kayla. For both of my kids. To be able to go outside and play. To have kids come knock on the door and ask, "Can Kayla and Lucas come out and play?" (Although sometimes that knock on the door becomes a little irritating when it always happens 5 minutes after we get home from somewhere).

This is why making 'the decision' is so, so hard. These are the formative years; these are the years friendships are made and acceptance is borne. If we move in the later years she will have to start over in more ways than one - she would have to start over with her name on the state's waiver list. That would put her even further back for benefits when she becomes an adult.

Still don't know what to do, but for now I will smile at the story from an outsider, from a new family to the neighborhood, who watched from a distance and saw that my girl was indeed, included.

Retirement Looms Heavily on my Mind

While we are just a bit young to be thinking of retirement and where we will settle after retiring, we aren't too young to be thinking about retirement in the military sense.

A few weeks ago, on Dec 16, Joe reached an anniversary: 21 years in the military. Twenty-one years. (Congrats on making it that long!) He could have retired last year after he hit that 20-year mark. He could have dropped his retirement paperwork at any point in this last year. He could put his paperwork in next week.

But he actually just reenlisted for two more years. Although he can still retire at any time. And this new reenlistment won't last forever. We'll have to retire from the military eventually; and eventually means sooner rather than later.

With that military retirement comes a lot of decisions. The main decision is where to live. We don't have to stay here in SC since we're only here because that's where Joe is stationed. We're not from here.

And that's the problem ... both of us were military brats so we don't consider any particular place as home. We don't have a home town to go back to after retirement. We've been talking about where we want to retire to for the past, oh, 10 years. Yet we've never come up with a definite plan of where that will be. We just talk, but never decide.

At one point Colorado was on our list (and still is). It's a beautiful state and I enjoyed my time living in Colorado Springs way back before Joe and I were married. I like a change of seasons. They have a large Down syndrome community and support system and for the most part the school districts there are educating students with disabilities the way we envision Kayla's educational experience. They seem to have a better understanding and grasp of inclusion; we wouldn't have to be reinventing the inclusion wheel as we are doing with the school system here. But most of our family is here, on the East Coast and it's hard not living near family.

Staying in SC is definitely an option seeing as how we bought a house here. We're going on our 4th year here and there are a lot of things I like about the area. There are plenty of things to do; we always seem to be busy going to this event or that event. There is a pretty large community and support system for Down syndrome/disabilities in general. The humid summers are brutal though, and as I mentioned above, I like a change of seasons and you don't get much of that in the South. But mostly ... we're becoming more established in this area; in this community.

For me that is important in relation to Kayla. The early growing up years are the formative years. She's finding her place at school. People know her. Students are used to her. I want her to grow up with kids, students, and friends who will know her most of her life. Who will be used to her. Who will accept her because they are used to her being there. Who will be ok with her differences because that's all they would have ever known about her.

The downfall to staying here is the school system. We've had to really advocate (fight) for her right to be in a general education classroom with the supports she needs to be successful. It's hard to be the first one to make changes in such a big way. While things are better this year we still have middle and high schools to get through and I anticipate the fight is only going to get tougher. And trying to 'blaze a trail' for other kids that come after Kayla is exhausting; it's mentally and emotionally draining and has already taken a toll on me.

She's only 2 years away from middle school. Middle school is hard no matter where you are or what differences you might or might not have. I would like her to be established in a school system that is already used to her. The longer we are here the more time she will be ingrained in this community ... yet we don't know if this is where we want to settle down and raise both of our kids. We don't know if this is the school system we want them in. But the longer we wait the older she will be. I would hate for her to start over at a new school in a new state with new students in her last year of middle school or first year of high school.

Not to mention I have reservations about the middle school she is zoned for. I've heard for several different parents not-so-great things about this middle school. I've heard from a couple of families that are looking to move to another housing development so their child will be zoned for a different middle school. I've heard parents cross their fingers that their child will ace their audition to a local arts middle school so they don't have to go to this school that we are zoned for. (Which might be an option for Kayla as well; I need to look in to what would be required for her audition to this school, but I am going to encourage her interest in drama and maybe that will be an option for her). 

Another plus of staying here would be way in the future - after Kayla was finished with high school. I would like for her to attend the REACH Program at the College of Charleston. There are programs at colleges and universities all over the states that she could possibly go to as well, but the REACH program is slightly different and feels more inclusive to me. Maybe by the time Kayla is finished with high school other places will be offering the same type of program that CofC does, so there could be other options.

I wouldn't change my past of growing up as a military brat and having to move around every few years. Kids adapt to change; I know that. So far Kayla has shown resiliency in the changes she's endured with going to new schools. I think I adapted pretty well to change and moving when I was growing up. I have friends that I made when we were at Hanscom AFB, MA, and Zweibrucken, Germany, and, McGuire AFB, NJ that I still keep in touch with. But that's not to say it wasn't hard. It was hard to move, be the new person, to start over at a new school. It was hard to say goodbye to friends each time we moved. And I worry that it will be that much harder for Kayla because of different reasons.

When Joe does retire the military will move us one more time at their expense. This doesn't have to be within a year of his retirement either - he could use it later if he wanted to. So we could pick a place on a map and basically move anywhere. I'm just feeling overwhelmed on where to even begin researching places to live ... our main priority would be the educational system and what that would look like for Kayla.

We are just finding it hard to figure out where exactly that place will be.