Tuesday, April 30, 2013

The First-Time Homebuyer Blues



It's as I'm packing up the last boxes from my first home that it really hits me how few things went right with this, the biggest purchase of my life.

I tried. I tried really hard to make the "smart" money decisions, but it seems none of that mattered in the end.

In the mid-2000s, everyone was urging me to buy property, and with the insane loan options they had then I probably could have gotten something nice. But, fresh from a college economics class, I said: No way, prices aren't matching with incomes. The bubble will certainly burst.

Burst it did in 2006. By 2008, the year my husband and I were married, we thought we were getting in at the bottom of the real estate dip on a small 2-bed, 1-bath home in a rough-but-up-and-coming neighborhood. The house was small, but it was also considerably cheaper than the maximum loan the bank would give us — another way we thought we were being "smart" with money.

We found a special first-time homebuyer's program through the Portland Development Commission and jumped through their many bureaucratic hoops. Except, during closing, they suddenly revealed that since my husband had been picking up some overtime in the months leading up to our move, we no longer qualified for their special rate. Instead we would have to take the 5 percent APR of the Oregon Bond Loan, which at that time it was no different than the market rate.

Over the years, we invested in a few home improvement projects as able — renovating the shower and its moldy window, adding a small dishwasher, repainting absolutely everything.

We even heard about a promising new Clean Energy Works program spearheaded by Mayor Sam Adams. The idea was a good one. Say your gas bill is $100 a month. This program set up a loan with $50 a month payments that you use to install insulation that lowers your gas bill to $50 per month. So, you still pay $100 a month, but you use less energy.

That part of the program did, technically, work. Everything else about it was horrid. The recommended contractors were awful; the work had to be redone several times. Sitting down to sign the loan paperwork was also the first time we learned that the loan structure was such that large amounts of interest were paid first and then after six years would be a balloon payment of several thousand dollars. Not awesome.

Fast-forward to today. Our modest first-time home is worth $50,000 less than we paid for it; $30,000 less than we owe on it. This doesn't include any of the money we spent on upgrades.

Because we have an Oregon Bond Loan, we are not with Fannie or Freddie and so don't qualify for any of the national loan restructuring programs aimed at people like us. Because of unforeseen circumstances — namely, a pregnancy resulting in two children, one with a significant disability — we also have dramatically less income and less savings than anyone assumed we would at this point. If we did, we might be able to invest in a refinance at today's current 2.5 percent rates that would almost halve our monthly mortgage payment.

As it is, every month we pay the bank as part of our mutual fantasy in which the house is adequate collateral for our loan. For some reason they refuse to consider the possibility of continuing this fantasy in a refinance that would make it easier for us to not foreclose on the house.

But we're "smart" about money, remember? We haven't missed a payment; our credit is perfect. Doesn't matter.

Oh well. Even if we could refinance, the home is too small for a family of four, especially when one of them comes with a lot of equipment.

This confluence of circumstances means we are moving. Into a larger home, yes, but one that our family of four shares with four other adults. We are doing like many Americans in this lackluster economy and moving into a multi-generational household in yet another attempt to make a "smart" money decision.

Depending on your politics, you may read this account and think anything from: "See? This is why we shouldn't have any government programs," to: "See? This is why we need better government programs."

One thing I know for certain is that my "smart" money decisions look pretty dumb in hindsight.

Wednesday, April 17, 2013

Things That Have Made Me Cry Today



This morning I visited the perfect preschool. It's within walking distance, Montessori-ish, parent co-op, inexpensive, loads of integrated lesson plans, big beautiful playground.

But, small classrooms crowded with learning stations, bark mulch playing surface outside and no one experienced with physical disabilities. Worst of all, the swings don't even have a back part. Malachi loves the swings. How will he ever be able to swing without a swing seat?

I listened to the teacher describe a typical day with mixed emotions. She noted how each kid put up their jackets on a hook in the crowded hallway and then signed their name in, then wandered to whatever station they chose. Malachi wouldn't be able to participate in any of that, I knew, and it made me very sad. But I was also so proud because the entire time she was describing this, Malachi was sitting completely unsupported on a regular chair, picking up small foam pieces and putting them in a bowl.

How far we have come.

How very much further we have to go.

The preschool is perfect for JJ. And Malachi, for that matter, as long as we can get some help. I really hope that we can make something work with our local services to bring in a full-time aid. We'll see.

But there were other wonderful things that made me cry today.

First, Yankees fans — sworn enemies of the Boston Red Sox — sang Sweet Caroline, a Fenway Park standard, in support of Boston as it mourns the marathon bombings.



Then, I saw that the New Zealand house of representatives burst into a traditional love song after legalizing same-sex marriage. 



H/T: MacLean's


How far we have come.

How much further we have to go.

EDIT: My kids woke up from their nap, so I didn't have a chance to add this link, from Chasing Rainbows. It seems the entire special needs blogging community is mourning with Kate Leong for the loss of her son Gavin, a 5-year-old with cerebral palsy. I didn't have the fortune to hear about Chasing Rainbows before her family's tragedy but I can easily see now why she is so beloved. She is so open, honest and eloquent in her writing — so obviously kind and loving. I highly recommend popping over to read a few of her posts like, In Lieu of Flowers and the beautiful story of organ donation, A Meeting Orchestrated From Heaven.

Saturday, April 13, 2013

The Lessons We Can Learn From Special Needs Siblings

I was typing fast in a rush to get out the door... and get done before JJ's willpower to not touch my computer buttons faded. He was sitting next to me: "Whatchya doin', mama?" he asked about a dozen times.

"Working," I said as I finished up the Special Needs Sibling Week post. Then I realized: "Oh yeah, I'm doing this for you." So I stopped and I show him the picture on yesterday's post: our guest blogger's identical twin girls, one of whom had a severe brain injury.

"Look, twins!" I said. "These are same-same (identical) twins. Do they look the same or different?"

"Different," he said, clearly pleased to be part of mama's work.

"Yes," I said, "but these twins are like you and Malachi. This one can walk and run, like JJ, but this one has cerebral palsy and can't walk, like Malachi."

"Paaal-zie," he said, and I watched his face process this new information. I wondered what was going on behind those raised eyebrows. Finally he said:

"Go to Africa and see flamingoes."

You see, the day before we had gone to the zoo. We went all the way to the Africa part to see their new flamingoes exhibit. JJ seemed to be saying that since they are like him and Malachi, they must have gone to the zoo too.

Clearly the things that are important in his world do not include his brother's ability to walk.

I pressed "Publish" on the post and we rushed out the door to an Anat Baniel Method series we are doing with a traveling practitioner. I dropped him off with new friends who have twin baby girls, one of whom has CP, before going to the ABM lesson where I passed a 3-year-old twin boy who has CP. The bonds of our similar situations and similar treatment philosophy have already brought our three families close — well, as close as twin parents with their notorious lack of free time can be — and I had a vision into the future of playdates and birthday parties.

And suddenly I realized that this thing that I hated so much in the beginning — the pure "Why me?" rage at having not only twins but disability to deal with, no longer felt like such a bizarre twist of fate. I have many online friends who are part of my Parents of Multiples with CP facebook group and I've somehow managed to meet two other families with this situation in the immediate vicinity.

To JJ and Malachi, this life will seem like a perfectly normal part of the spectrum.

And perhaps that's what I've enjoyed most about this week of looking through the eyes of our special needs children's siblings. It takes years for it even occur to them that their siblings are different or that their family is abnormal. To them, it is just life. And it is a good one.



This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10. This week we heard stories from all over the blogosphere:

Monday: Announcement and link-up
Tuesday: Outrageous Fortune: To Typical Twin, Disability is Never Weird or Awkward and Why You Should Think Twice Before Finding Disability Inspiring.
Wednesday: Team Aidan: Having a Special Needs Brother is 'Awesome,' says 13-year-old and These Broken VasesThe Typical Sibling AKA The "Normal" Sister
Thursday: Bringing the Sunshine: When Both (or Neither) of Your Kids are The Other One
Friday: The Fisch Tank: Matters of Severity

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:





Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! 

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Friday, April 12, 2013

Matters of Severity (post hop)



Jenny Fischer over at the Fisch Tank is our last featured blogger during our so-called Special Needs Sibling Week. Her identical twin daughter, Cici, had an acquired brain injury very early in life and is nonverbal and is dependent for most life functions. Her big brother and twin sister still just see her as a sister, though.

Jenny asked her kids what they thought about Cici, with pretty funny results:

Question 3: Do you like having Cici as your sister? 
Max: Yes.
Penny: Sometimes. Well, she lost teeth and has lots of money from the tooth fairy and I haven't yet.

Head over to her post today Matters of Severity!



This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10. 

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:





Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! 

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Thursday, April 11, 2013

When Both (or Neither) of Your Kids Are "The Other One" (post hop)

So far during our week-long celebration of Special Needs Siblings we've turned our focus to the "normal" kids in our families and seen through their eyes that our special needs kids are normal too.

But what about when both of your kids have special needs?

Such is the case with today's featured blogger, Andi Sligh of Bringing the Sunshine. Andi's daughter has cerebal palsy and her son has Down syndrome.


Head over to read When Both (or Neither) of Your Kids Are "The Other One" a marvelous post about the acceptance and love that these two share for each other and how each is the "typical" one at times.

As a final note, scheduled blogger Love That Max is using today's post to send prayers and love to Kate of Chasing Rainbows whose son is in critical condition in the hospital. Please join her at The Power of Pixels and Prayers: For Gavin and Kate With Love.


This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10. 

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:





Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! 

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Wednesday, April 10, 2013

Two Sibling Posts to Hop to Today!

The schedule for this Special Needs Sibling Week has switched up a little bit.

Yesterday, you read two posts from me:

To Typical Twin, Disability is Never Weird or Awkward

and

Why You Should Think Twice Before Finding Disabilities Inspiring.

This morning, I featured a brother's article in Pediatric Nursing magazine and asked you to head over to his mom's blog to read the very funny and honest "From the Rooftop."



This afternoon, you get to visit Ellen Stumbo's blog These Broken Vases to read about her oldest, the typical sibling of a sister with Down syndrome and a sister with cerebral palsy. 

"Because of her sisters, she is one of the most accepting and understanding kids I know. I love her heart of compassion, and how well she "gets it" when it comes to other kids (not her sisters) having special needs."


And come back tomorrow when we have another double-header scheduled from Love that Max and Bringing the Sunshine


This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10. 

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:






Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! 

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Having a Special Needs Brother is "Awesome," Says 13-Year-Old

Liam, now 14


I wonder a lot about what our family life will look like in a few years. You might have read my musings about The Unusual Ways Disability Affects a Non-Disabled Twin, the personality traits I see emerging in JJ and how his sibling's disability will affect him in years to come.

So it was with great interest that I read a fellow cerebral palsy mom blogger's post about her 13-year-old's editorial in a national magazine, Pediatric Nursing. (Wa-hoo! Go Liam!)

I highly recommend this article, it's funny, sweet and wise beyond his years.

Liam wrote of his brother Aiden (11 years old, non-verbal, seizures, power chair) that: "To me, even from the first moment I laid eyes on him, he seemed normal." Here are some more of my favorite quotes from the article:

"For me, (his disability) meant that there were lots of strangers in my house and invading my space while they played with my brother."

"At (7 years old), having Aidan as a brother seemed awesome. He was giggly most of the time, and I would never fight with him. It also seemed pretty cool to go on doctor visits and get stickers all the time. To most kids, the hospital may seem scary, but when I first went to the emergency room to get a splinter removed, they had free drinks and a cool goldfish tank. What was not to love about the hospital?"

"Some people in public have what I call “Excessive Staring Syndrome (ESS).” People affected by this afflic- tion can show these symptoms: staring at people in wheelchairs because they are different, staring at anyone who is different, and quickly looking away if someone sees them staring. When I was a kid, this never really bothered me, partially because I never knew that people were looking at him and partially because I didn’t realize that they weren’t staring at him because he was so handsome."

"If you keep someone locked away from society, when people do see them, they will stay away from them like they have a contagious disease. However, when you let children and adults talk to the special child and get to know them, suddenly you have an accepted child."

"Some of the best parts about being his brother are that I get to be close to him and support him through everything he does."

"I don’t feel like (accessibility issues) takes away from our being a happy family; all you need for that is time together."

Please hop over to this bright young man's mother's blog to read her post "From The Rooftop" today for Special Needs Sibling Week!


This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10. 

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:






Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! 

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Tuesday, April 09, 2013

Why You Should Think Twice Before Finding Disabilities Inspiring

I want to have an honest conversation about "inspiration" and disability.

Be forewarned: this could get sticky. But I think it's important to have these sorts of conversations, even if we don't quite know yet how to say what we mean. It's even important for me to have this conversation even though I'm not a member of the disabled community and can't speak for them.

I started thinking about this in ernest after I read this post from a woman talking about the Paralympics and how proud she was of the athletes but also how nauseating she found it when we congratulated ourselves on finding them so inspirational.

"When you say that we’re inspiring, whether we’re doing ordinary things like getting groceries or taking public transit, or extraordinary things like developing groundbreaking medical technology or competing in elite athletic events, you’re othering us. You’re saying we need to be singled out as remarkable because of our disabilities, and it pushes us further to the margins."

I also liked this tweet she quoted about why the "inspirational" word can get under people's skin:

"@vworpvworp: It objectifies the hard work I've done, that my community has done, without challenging the attitudes that make it hard."

It got me thinking of the mixed emotions I feel when people tell me they could "never" do what I do. I feel a sense of pride, but I also feel it "others" me to a place where they have no right to relate to my struggles and I am so far beyond help that I could never relate to theirs.

These emotions started pinging around when I got forwarded this video about a dog and a girl with Down syndrome interacting.

(video)

It's all cutesy and soft focus, but I couldn't help but feel like "umm… it's a dog playing with a baby. Cute. But nothing extraordinary." I figured I just was being grouchy and moved on.

Then this video started flooding all over my Facebook feed:


(video)

It's a story about two brothers who compete in races together. Why is that special? Because one of them has severe cerebral palsy so the able-bodied brother pulls him in a bicycle cart.

I'm not saying this video isn't inspiring. There are a lot of awesome things about these kids' story: brotherly love, perseverance, the notion that winning is not as important as doing something together.

But it reminded me of this other video of twin sisters I saw a while back.

(video)Twins Bond in the Gift of the Other: Hailey is There for Olivia, Born with Cerebral Palsy and Epilepsy 

In both of these stories, I got the funny feeling like the person with the disability is almost a prop, not a real person with their own side of the story to share. Instead they are presented as this negative force on the family who is bravely overcoming it, like a natural disaster.

This is where it gets sticky. Because, as I've argued before, a disability is a hardship for the entire family and white-washing over that is to deny a basic truth. I also agree that disability is interesting, and a story about a person with a disability doing something is often more poignant than a story about a typical person accomplishing the same thing.

So I'm not arguing that we should just be "disability-blind." But take another look at those videos. What is it that we find truly stunning? What is so beautiful, remarkable and worth sharing about them?

I'll tell you. It's that in each, the dog/the brother/the sister is very naturally and effortlessly treating the person with a disability with exactly the same amount of love and respect as they would were they typical.

That is such a foreign and awe-inspiring concept to those of us who did not grow up around people with disabilities. Before I had Malachi, I was very nervous about what exactly it meant to have a disability and how people with disabilities would want to be treated. For the most part, I ignored them, thinking that I was doing them a service by not staring or singling them out or expecting them to tell me their life story because they happened to be visibly impaired. And perhaps for some that was appropriate. But I certainly didn't do it because I felt comfortable around them.

In a segregated school system, I rarely interacted with people with disabilities as peers, so I didn't develop the necessary familiarity.

Imagine, therefore, having JJ's perspective. Malachi has always been his brother and has never been able to move around like he does. I doubt it has ever crossed his mind that Malachi could or should move like that. To JJ, Malachi is just his brother, no more, no less.

(video)

Now. How did that video make you feel? Was it just cute? Or was it "inspiring"?

When we make someone "inspirational" are we ultimately doing them a service?

Or are we putting them on a pedestal without working to figure out why they need to be raised up in the first place?


I snuck this in as a bonus post to as part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10. 
Read this morning's post To Typical Twin, Disability is Never Weird or Awkward and come back tomorrow at 8 a.m. for a post from Team Aidan

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:





Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! 

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

To Typical Twin, Disability is Never Weird or Awkward




JJ is just an extraordinary kid. He's bright, funny and playful. He's fiercely independent, adventurous and friendly.

He calls everyone he meets "Kid" or "New Friend." He doggedly attempts to connect with these new friends. His favorite strategy is to mimic whatever they are doing. For children under a certain developmental stage, this totally works. They think: "This guy thinks I'm awesome!" For children over a certain developmental stage, this is off-putting. They think: "Is this guy making fun of me?"

Even when rebuffed, JJ shrugs it off and tries different tactics. There was only one time I can remember that he gave up. One little girl, about 18 months old, would make an obnoxious screeching noise every time he came near and tried to talk to her. He eventually came over to me and said: "Different new friend, please?" Even then, a few minutes later they were playing air hockey together and cracking up about the sound "DA-duh," which they repeated back and forth several hundred times.

The other day we were at IKEA and a 10-year-old girl walked by. He pointed to her and said: "New friend walking." When we were in a hospital waiting room, he immediately crawled over the chairs to smile at and talk to a "new friend" facing the windows in a wheelchair.



To him, disability is not weird or awkward. Even when I think I've fully assimilated into the disability world, he will surprise me by being totally fine with something that I still have a hang-up about. We got a new walker for Malachi and still had a borrowed walker for a little while. JJ immediately adopted it as "his" walker and motored around in it whenever Malachi was in his. It is, obviously, a fun and liberating toy for Malachi and so, of course, JJ wanted his own.



Being a sibling of an extra-needs child is rough. It's just a fact that the other one gets more attention and special treatment. Recently, JJ started asking for "JJ appointments" since we are constantly going to "Malachi appointments." Often, he insists on bottles he doesn't need anymore or other special foods that Malachi is still allowed.



But JJ has risen to the challenge of being Malachi's twin over and over again and I know he will continue to. The biggest reason why? HE doesn't consider it much of a challenge. He loves his brother and — in a very deep way that will inspire me for the rest of my life — doesn't see anything wrong with him.




Here are some more of my favorite posts about JJ (aka Jaden):
The Return to a Normal That Never Was
The Unusual Ways Disability Affects a Non-Disabled Twin
One Twin's Parents are Nothing Like The Other's



This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10. 
Stay tuned for another post at 8 p.m. (Pacific) and come back tomorrow at 8 a.m. for a post from Team Aidan

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:





Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! 

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Monday, April 08, 2013

Announcing a Week to Celebrate the Siblings!



One of the things I mourned the most about Malachi's diagnosis of cerebral palsy was that he and his identical twin would never be identical. No one would confuse them for each other, no one would ask me how I tell them apart.

But I also mourned for Jaden. I knew that this diagnosis would also affect him tremendously because we, his parents, would always be spending an unequal amount of time and attention on his brother.

And so it goes.

But in talking to another blogger about how amazing our "other" kid is, I thought: "Gosh, wouldn't it be great to take some time to talk about THEM on our blogs?"

Many other bloggers agreed, so this week we are taking a chance to recognize the siblings of our special needs children. April 10 is National Siblings Day, so we are calling this Special Needs Sibling Week. We will use our blogs to write about "The Other One" (as Kate Strohm calls herself in her instructive book on being a sibling of a person with special needs). Here is the schedule:

Wednesday: Team Aidan
Thursday: Love that Max 
Friday: Fisch Tank
Sunday: Recap and thanks

If you blog about your special needs kid and want to join us in our celebration of The Other One in your household, take a minute to link up your post using the following linky. Then come back every day this week for the next blogger in our series!



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