Monday, August 31, 2009
Last year at this time, Max wasn't able to articulate "no" or "yes."
Chocolate ice-cream is clearly an amazing motivational tool.
Posted by Ellen at 12:04 AM
Saturday, August 29, 2009
That's the subject of a New York Times article I just found out about, a piece that talks about the effects of having a child in the NICU. According to a new Stanford University study, parents of preemies in prolonged intensive care are themselves at risk of developing post traumatic stress disorder—a mental illness typically associated with soldiers returning home from war.
Max was in the NICU for two weeks (that's him toward the end of his stay, above); having an infant in the NICU for months on end seems like a whole other ring of hell. My heart goes out to any of you who went through that. I can still picture my little Max lying in the incubator, hooked up to a million tubes. He looked so pink and so perfect, it was hard to reconcile that with the fact that he had extensive brain damage.
I'm past the trauma of the NICU...mostly. It'll always be there, tucked away in my psyche, but the reality of Max has helped heal me.
Friday, August 28, 2009
Since I have filled the blog this week with lightweight fluff, given Max's stem cell infusion and all, I thought it was time for a deep, meaningful post.
There we were in Raleigh's beautiful Sarah Duke Gardens. Max was having a blast doing meet-and-greets with various dogs. And then, in the distance, I spotted them.
No, I thought. That man could not possibly be walking a DUCK.
But, yes, he was.
Max dashed right up to them; six-year-olds are fantastic ice-breakers.
Me (at a loss for saying anything remotely intelligent): "Is that your pet?"
Duck guy: "Yes!"
Me (still at a loss for saying something intelligent): "Is it common for people here to have pet ducks?"
Duck guy, shrugging sheepishly: "No, it's pretty rare."
Me: "How long have you had him?"
Duck guy: "Since he was two weeks old, he's six now."
"Wow!" I said. I was so dumbfounded that I forgot to even ask the duck's name.
As soon as we walked (and they waddled) away, a whole lot of other questions occurred to me, like: What do you feed a pet duck? Can you teach a duck to roll over and play dead? Why did he have that duck on a leash, anyway? They don't walk very fast. Can you cuddle with a pet duck at night? Will one fetch your slippers? Lick your hand? Do you even want your pet duck to lick your hand?
If any of you happen to be sitting on your couch reading this with your pet duck by your side and have answers, by all means, share. And if this post has inexplicably inspired you to get a duck of your very own, check out The Pet Duck & Goose Association, which contains such helpful information as: "Bird droppings are pretty messy and to allow your duck to walk around your house a diaper is most likely a must for you."
Thursday, August 27, 2009
I have mixed feelings about visits to the neurologist. I fear hearing negative news, but then I love the high I get when he tells us good stuff. We see Max's about twice a year now, and that's plenty for me.
For the final part of Max's stem cell infusion, yesterday we took him to see the chief of the division of pediatric neurology at Duke University School of Medicine, Dr. Mohamad Mikati. It was necessary for stem cell infusion research so that when Max returns in a year, they'll have a baseline neurological measurement to compare him to.
Back when Max was an infant, I couldn't see enough doctors. I wanted answers, answers of any kind, about what the future held for him. The problem was that some doctors were more pessimistic than others, and they'd only make me horribly anxious. Eventually I came to accept that no doctor was capable of giving me that information, because nobody knew for sure how Max's little brain would heal from the stroke. Doctors most definitely don't know everything about neurological conditions; the brain is still largely a mystery to them.
I felt my usual trepidation. Was Dr. Mikati going to be one of those grim docs? Would he see something bad that our usual neuro hadn't seen?
Max trotted around the office, making friends with the staff and other patients. For a while, he pretended to be an airplane. Then he made a nurse take his blood pressure twice (even though she didn't need to take it at all) because he liked the feeling. Weirdly, the kid also loves to have his ears examined with that ear thingamajig. He points to it in doctors' offices, expectantly.
The good times didn't stop in the waiting area. This doctor, in his sixties, had seen lots of Maxes in his life (our beloved neuro is wise, but younger). After asking a bunch of questions about Max's development and how he's doing now, he told us he thought Max's speech would keep getting better and better—and that he would eventually be able to completely communicate through words. Perhaps not complicated sentences; instead of saying something like, "I'm really in the mood for a beer right now," Max might say "I want beer" (that's my example, not the medical one). He thought Max's hand functionality would improve significantly as well. "He's only six—he has at least ten more years of development," said Dr. Mikati.
Then I asked the one question that I know I shouldn't ask, but I couldn't help myself. Because as hard as I try to not look into the future, it is the thing I always wonder: "Based on kids you have seen like Max over the years, do you think Max will be a functional adult? Will he need to be in one of those special homes?"
The doctor looked at me kindly and said, "Max will come along. While I cannot say for sure, I think he will be mainstream."
No doctor had ever dared to say that before.
I realize it's just one doctor. An experienced doctor, yet just one doctor. And, of course, he could not be certain.
But, WOW. Holy, holy wow.
I felt the tears coming, tears of happiness. "Are you typically an optimistic doctor?" I asked. I needed to make sure, as crazy as it sounds, that he wasn't just an overly optimistic doctor.
He didn't take my question the wrong way. He said, "The little boy I saw before you? I did not have such optimistic things to say to his parents. But for Max, I have a lot of optimism."
After, Dave, Max and I drove to the airport, boarded the plane and as it took off, our spirits were soaring into the sky, right along with it.
Posted by Ellen at 12:05 AM
Wednesday, August 26, 2009
Those are Max's stem cells, above. Aren't they just beautiful?
As you can imagine, I had a ton of questions for the doctor who's spearheading Duke University's stem cell program: Joanne Kurtzberg, MD, Professor of Pediatrics and Pathology and Director of Duke University's Pediatric Blood and Marrow Transplant Program. She is a brilliant, progressive-minded doctor and a person who manages to be both matter-of-fact yet warm at the same time. She first started researching stem cell therapy for kids with leukemia back in the 80s. Since then, she's treated more than 1600 kids with life-threatening cancer, metabolic and blood disorders, using donor stem cells, and 120 kids who had neurological conditions such as hydrocephalus, brain injuries from falls or drowning and cerebral palsy, using their cord blood. The stem cells are injected into the arm or leg, but it's possible that someday, they will be injected into the brain. It is still unknown where the best injection spot is.
Right now, Dr. Kurtzberg is only using stem cells from cord blood to treat cerebral palsy because the risks of using ones from a donor, even a sibling, are too high. In order to make donor stem cells "engraft" (or take) a child needs to receive chemo, a process that takes two months and can be dangerous. Since cerebral palsy is not a life-threatening condition, the doctor says, the risks outweigh any potential benefits (unlike, say, leukemia).
Dr. K told me that stem cell transplants have helped kids with cancer and other diseases. She and her team were able to do a biopsy on the brain of a child who died 10 months after getting a stem cell transplant. It was her progressive neurological condition that ultimately killed her. In fact, when they looked at her brain, they could see that 40 percent of the cells had reached there. With kids who have cp, the results are less clear-cut; reports come in from parents, but they may not be the most objective source. There is a lot of misinformation out there. Remember that video of Dallas Hextell I mentioned a couple of weeks ago, a video that showed he was able to walk after receiving a stem cell infusionl? That video and story were misrepresentative; Dr. K said Dallas was walking before he got the stem cell therapy. But she says that she has heard of kids being better able to use their limbs, and improvements in speech.
Results can start showing up around six months after the infusion. I'll be e-mailing Dr. K every few months to tell her how Max is doing, and we'll go back and see her in a year. Before we go home today we'll be visiting a pediatric neurologist at Duke U., who will assess Max and then see how much he may change by next year.
Dr. K believes that stem cells are best administered as soon as possible after a brain injury has occurred. Two other stem cell infusions happened yesterday, and one of them was for a six-week-old infant. I didn't feel comfortable asking what had happened, but I was thrilled for that child. I only wish, as I've said before, I could have done this sooner for Max.
For now, treatment is still considered experimental and unproven (more on that below), but with help from champions like Dr. Kurtzberg, perhaps in the near future we will get proof that it works. Once that exists, more hospitals around the country would start doing this. And that would be tremendous. As you know, there is no cure for cerebral palsy. Not yet, anyway.
A few more questions Dr. Kurtzberg answered for me:
Can you give a basic explanation of how stem cell therapy is supposed to be effective?
"We believe that stem cells can travel to the brain and then help repair damage caused by stroke, low oxygen or other vascular problems. The cells may work in two ways, first by releasing hormones that calm down inflammation and also attract cells from the brain to heal damaged areas, and second, by providing stem cells to contribute to the repair."
What are your hopes for the state of stem cell therapy five years from now? Ten years from now?
"I hope that we first learn if stem cell therapy works and also the best way to use it. We need to know what are the best cells to use, what is the best place to give them and what dose is most effective. We also need to better understand when children with cp sustain their brain injury and how to detect it as early as possible. I believe that stem cell therapy will help children with brain injuries but I also believe that the earlier it is given, the more effective it will be. I think that it may be possible, in the future, to scan babies in utero or at birth to determine whether they have an injury, and then to treat them within the
first few days to weeks of life."
What advice do you have for parents who did not bank their child's cord blood at birth?
"First, these parents need to know that we don't know if cells help yet. While it's very hard to wait, that's what they should do. I can promise that if we find that cells do help, we'll next find a way to safely use donor cells for children who didn't have their own cord blood cells stored."
Can you give any information on the upcoming trial?
"The upcoming trial will enroll 120 children with spastic cp between the ages of six months to six years. They will be tested with an MRI, neurodevelopmental testing and a neurological examination before treatment. Children will randomly receive their own cord blood cells or a placebo for their first treatment. One year later, they will be tested again and will cross over and receive the treatment they did not receive the first year. They will be studied again one year later. The treatment will be blinded, which means that no one will know which treatment each child received first and second until the end of the study."
If you are interested in finding out more information on getting your child into the trial, which they hope to kick off this fall, you can contact the Director of Clinical Operations, June Allison (the woman is a saint) at firstname.lastname@example.org.
Tuesday, August 25, 2009
I'm sitting here at Duke University Children's Health Center writing this as Max is watching Toy Story and vegging out. The stem cell infusion is done; it took all of nine minutes. The infusion started at 12:56 p.m., and ended at 1:05 p.m. It's such a crazy-short amount of time for all that anticipation; one nurse here described it as being like Christmas morning.
Max did amazingly, from the second we stepped into the day hospital at Duke at 10:30 this morning. The pediatric staff is wonderful.
A nurse found him a truck.
Mary Margaret, a sweet woman who works for a North Carolina program called Arts for Life—which works with hospital patients—did painting with him.
Max showed off his painting to everyone who passed by.
Next, Max got down with the music therapist, Tray.
Then all of a sudden, a team of people showed up at the door: It was time for his infusion. Dr. Joanne Kurtzberg was there, assorted nurses and a camera crew, who were taping her for a TV segment. They asked our permission to tape the infusion and I said yes; I am all about spreading awareness of stem cell therapy, cerebral palsy, Max's cuteness, you name it.
Max only cried when they put the infusion needle into his foot. And then the drip started. I found out that there were 190,000,000 of Max's stem cells in the infusion bag, which sounded pretty damn good until I learned that a billion is not uncommon. Max had a relatively low number of stem cells harvested at birth; the amount gotten depends on a variety of factors, including the ability of the person doing the job to snag every last stem cell possible. So, we didn't exactly luck out in that department, though we were very lucky we had banked his cord blood at all.
After the infusion, he was back to his usual happy camper self. We'd been told his breath might have the scent of creamed corn, and sure enough, Max smelled like a Thanksgiving side dish.
I'd been a little worried about how Max would react to being in a hospital; he was a trooper. I was a little worried how I'd do, too. I'm sure many of you know just how hospital settings can conjure up painful memories. But I was fine. I am now able to say things like "an intern in the NICU noticed his leg twitching, and that's when we were first aware something was really wrong" and "the doctors said he'd had a large bilateral stroke" without shedding a tear. But one thing that got to me was seeing other kids at the day hospital undergoing treatment. There were a lot of kids with cancer. A sweet little three-year-old girl was so puffed up from chemo, and I felt sad for her and for the hell her parents were going through.
I've learned lots about stem cell therapy, which I'm excited to share with all of you. But first, here's a snippet of the infusion. It was pretty uneventful—and that's a good thing. SWIM, you stem cells, SWIM!!!
Monday, August 24, 2009
It's the night before your stem cell infusion at Duke University.
We've both come light years away from the week after your birth when you were in the NICU and I sat at the kitchen table in our house, our too-empty house, and desperately Googled "treatments for brain damage." I was terrified of what lay in store for you. That's when I first learned about stem cell therapy. I couldn't find a single doctor in the country who was doing it. There was one I got on the phone who said he would be willing if we got special dispensation from The Food & Drug Administration for a life-or-death situation. Then it became clear that you were going to make it; it was less clear you were going to thrive.
We lost track of the stem cell therapy, caught up in a whirlwind of doctor visits, other alternative treatments, Early Intervention and finding private therapists to work with you. You made progress on your own timeline, proving the NICU doctors wrong along with the so-called specialist who said your future looked "ominous." And then, this spring, I learned about the Duke University stem cell program from Kate, an incredible woman who somehow found this blog and who keeps a journal about her son. Kate, there are no words strong enough to express how grateful I am. I am also eternally thankful to my friend Wendy, who's watching Sabrina while we're away and who told me to bank your cord blood at birth. "You never know," she said. So true, so true.
Max, if you are someday reading this blog, I need you to understand something very important. Your dad and I are not doing this because you are lacking in our eyes. It's not because we want you to be like other kids. We are doing this only because it might make life easier for you in some way. We try our hardest to give you the best life possible, but if there is a chance you might be able to use both hands a little easier, to eat a little easier, to speak a little easier, to think a little easier, then we need to go for it.
Back when I first started talking with other moms of kids with special needs, I remember one in particular telling me that she would never trade her child for a "typical" kid. I thought she was in deep, deep denial. But now I understand. I look at you and I see only an amazing kid, not a disabled one.
You are a boy who is full of enthusiasm and sweetness and brightness and good humor and all sorts of wonderfulness. You are fascinated by cars, planes, trains, garbage trucks, tow trucks, dump trucks and basically anything that has wheels (last month, you were able to steer a toy tractor by yourself for the very first time); you can play baseball and enjoy watching it, too; you can count to ten, speak a bunch of words and recognize some in writing; you can down seemingly endless amounts of chocolate ice-cream and birthday cake; you get a wicked kick out of pulling your sister's hair; you adore rain, but not the thunder; you're obsessed with the movie Madagascar, Curious George books and, tragically, the TV show Spongebob Squarepants; you like room service and demand it when we travel; you give the most delicious slurpy kisses; you adore computer games; you enjoy all sorts of music and sometimes break into this crazy dance move that kills me every time; you have a happy squeal that makes strangers smile and a giggle that makes the world laugh with you. I am not exaggerating when I say that you charm everyone who meets you. Even grumpy people.
On this day, in the seventh summer of your life, I want you to know that I love you infinitely. I could not possibly love you any more if the stem cell therapy were to work miracles. And if it doesn't do a thing I will, of course, love you just the same.
I love you as you are, Max.
Posted by Ellen at 9:10 PM
Sunday, August 23, 2009
I blogged the other day about seeing butterflies flitting around our backyard and wondering whether they were some sort of sign, but not quite believing it.
This morning, as I was packing for our trip to Duke University, I went to hang up a cotton top of mine that's been hanging on the back of the bedroom door for weeks now. I happened to glance at the label.
We arrived safely, the only hazard was when Max decided to push the luggage cart all over the lobby of the hotel we're staying in and nearly castrated some poor guy. Tomorrow, we head over to Duke at 8:15. Max is going to have his vital signs taken, get weighed and measured and have some blood work done. Then we'll have free time, we're planning on visiting Frankie's Fun Park, which sounds like...fun. Oh, and we're definitely trying some good ol' North Carolina BBQ, too. Yes, we are trying to cram lots of fun in before the stem cell infusion. Max deserves to have a good time. Come to think of it, so do we.
Posted by Ellen at 6:14 PM
Saturday, August 22, 2009
Friday, we mainly hung out around the Boardwalk, the park's water-fun section. We got a cabana; I swear I did not try to color-coordinate Max's suit to it.
Of all the rides, the rented stroller was one of Max's favorites. He loves pushing stuff.
Dave and Sabrina on the Lazy River. Dave excels at navigating Lazy Rivers.
It rained on and off, and Sabrina wore this towel around all day. Lately, she has a thing about being cold and always wants a sweater or a wrap; I'm not sure when she turned 84.
This ride had antique-looking cars, it was adorable. Not to mention the riders.
Max was part terrified/part fascinated by this drummer crew.
Of course, he adored the train.
Sabrina did, too.
We stayed at The Hershey Hotel, which was very elegant, none of the furniture was edible or anything though they did give us four Hershey Bars when we checked in. Friday night, while Dave and Sabrina went swimming, I took a bath with Max. I think this tub could have fit the four of us (well, maybe before we downed all that junk food in the park).
After, I wrapped Max in the fluffy towels and he had chocolate ice-cream we'd picked up at Friendly's. He was a happy camper.
Max was too excited to eat much at the park; the only way we could shovel food into his mouth was while he was standing and watching a rollercoaster.
Sabrina ate her way through the park. She tried cotton candy, Twizzlers (both were love at first bite)...
...and lots of ice-cream. Quote: "Mommy, it's hot, I need ice-cream to help me cool down."
The kids met a gigantic walking Peanut Butter Cup...
...and a gigantic walking Kiss. Max tried to get the Kiss to come on a ride with him, but the Kiss politely declined.
One of Sabrina's favorite rides.
She liked The Frog, too (it bounced kids up and down and up and down and, you get the idea).
Max liked riding the fire truck.
He went on the race track five times in a row.
Then he hit another truck ride.
Then he tried to hijack a state trooper's motorcycle.
We had a fantastic time! The park was clean, not crazy-busy and really accommodating to people with special needs. Just be warned, it is a dangerous place to be if you consider Peanut Butter Cups a food group.
OK, off to our next adventure, a very different one: Max's stem cell infusion at Duke University. I'll keep you posted! If you have any questions you'd like me to ask over there, let me know.
Hi, all. We are having a great time at Hersheypark, going on rides, floating down the Lazy River in oversize tubes and feasting on, you guessed it, chocolate. While we're away our home is being carefully guarded by...butterflies. Yes, in the last week or so we have spotted a bunch hanging out around the butterfly bush in our backyard. Remember the Butterfly Garden kit we got? I am pretty sure it's those guys.
I am not one of those people who's into palm-reading or horoscopes or ESP or anything like that—I am a pretty B.S.-free person—but part of me keeps wondering whether the butterflies are some sort of sign that Max's stem cell therapy is going to do something for him.
Then again, maybe they're just homesick butterflies.
Posted by Ellen at 12:10 AM
Friday, August 21, 2009
We're off to Hersheypark, so I have a guest poster today: Dianne from Nothing But Everything. She lives in Australia, but I think we were separated at birth—we both have a very similar take on life. I'll post photos from Hershey and start telling you all about the stem cell therapy (we go to Duke on Sunday) over the weekend!
Since my son, BC, was diagnosed with CP, I have joined several online support groups for other parents of kids with disabilities. That, along with the blogging mums I have met (including Ellen, of course) has been one of the best forms of support I’ve had along the way. It’s often made me wonder how difficult it must have been for mums in our situation to find support before the Internet.
I generally find these groups to be incredibly supportive and informative, with the rare exception.
Way back when we were first starting out on our journey, I joined a support group on a website that covered a range of disabilities. A mother wrote a message to the group expressing her sadness at her child’s disability and her inability to cope.
She received a very, very irate response, not from another parent but from an adult with CP.
There was a fair bit of anger in the response, which did a lot to suggest that mothers of kids with a disability had no real right to make out that they were so hard done by. And the main thrust of the argument was this: This didn’t happen to you. It happened to your child. Get over it.
At the time I was really hurt and upset by the post. So much so that I left the group. I didn’t want to be part of a group where people wouldn’t support each other.
I’ve thought about that post a lot over the past four years with a range of mixed emotions. I can definitely see where the poster was coming from. It’s true. And it can be very good to remember that I definitely shouldn’t be sad for my son because he, in fact. is not sad at all. He’s very happy.
Mostly though, I think the poster missed the main point. It is a huge responsibility being a parent of a child with a disability.
There are days when I am exhausted by the things we are doing therapy wise or feel guilty about keeping him so busy with all the things we are doing but at the same time even more guilty about the things we COULD be doing, but aren’t. Then there’s the guilt about the time I don’t have to spend with my other son. And there’s always that concern about the future. What will it hold for my son? How best can I prepare him for it? Am I doing enough to help him become an independent, happy adult?
While most days I am mostly content to focus on how amazing, funny, clever, resilient and strong my son is, there are days that the overwhelming responsibility of it all does get me down, because even though his brain injury didn’t happen to me, he is my son, I love him and I want the very best for him. Both now and for the rest of his life.
Posted by Ellen at 7:00 AM
Thursday, August 20, 2009
A month or so ago, I asked for your questions about estate planning for kids with special needs. They've been graciously answered by Diedre Wachbrit Braverman, an attorney and one of the cofounders of the Academy of Special Needs Planners. Eternal thanks to Christina Beavers, the woman who works with ASNP who made this happen.
Obviously, these questions are just a broad overview of planning for children with special needs; you would need to contact an attorney for further help. I know the whole thing is a little overwhelming but remember, this is not something you have to do tomorrow, next week or next month. With young kids, you have time.
"What’s the very first step you need to take to begin planning for a kid with special needs? I don’t know where to start!"
The very first place to start is selecting a special needs planning attorney that you trust to be your guide. That attorney will help you establish a special needs trust (SNT) for your child and can help you in other areas, like finding the right life insurance provider if that's something you're interested in. A special needs trust attorney should be called if your child may not be self-supporting as an adult. A special needs trust is a trust with a trustee that generally inherits money from the parents when the parents die. The trust will ensure that your child receives the inheritance that you wish for him/her to receive, without having a negative impact on the public benefits the child would otherwise lose.
"Do you usually do a special needs trust through financial planners or do you do it through lawyers?"
Custom special needs trusts are set up by attorneys. I always recommend people work with attorneys who focus on special needs planning.
"How do we find reputable people to help us navigate this scary planning process?"
I recommend visiting the Academy of Special Needs Planners’ website, where you can access a database of highly qualified attorneys who specialize in special needs planning. All of the member attorneys have a strong interest in special needs planning and a keen understanding of the challenges you and your family face. As you’ll see, ASNP members are located in many places across the country, so you can easily identify a planner in your local area.
"What are typical costs associated with setting up the trusts?"
Fees for special needs trust vary greatly across geographies, but you can expect that your special needs trust will probably cost more than the average in your town for a revocable living trust, because it is such a specialized and highly customized document. If someone offers you a trust for less than $2,000, be very cautious. Sometimes cheap, all-boilerplate special needs trusts are used as "loss leaders" to lure unsuspecting parents into high pressure life insurance sales pitches for high-commission, low-quality products.
"If you’re a family on a limited budget, how can you set up a special needs trust if you can’t afford to hire an attorney?"
One way is to join an existing special needs trust called a “pooled trust,” though it can still cost a couple thousand dollars. Many attorneys accept credit cards. And some may be willing to set up payment plans for you.
"Is setting up a special needs trust like a setting up a foundation, with a board or trustees?"
When you set up a special needs trust, you will select a trustee to administer the trust. The trustee should be someone that you trust to be responsible, ethical and knowledgeable enough to act in your child’s best interest. If you don’t have a family member or close friend who fits the bill, you may consider a corporate trustee (like a bank).
"I am confused about the money and how it can be spent. Can it be spent on old medical bills? Can the money be spent on related medical things, like an adaptive car, for instance?"
It really depends on what state you live in. Some states have very strict guidelines for what money can be spent on, while in others, the trustee can spend the money on whatever he/she decides is best for the beneficiary, like an adaptive car. Be sure to ask your attorney what the laws are in your state, and when you're planning consider if and where your child may move after you’re gone.
"Do you need special permission to spend money?"
The Trustee, who can be you if your trust is very carefully drafted, does not need anyone's permission. But if the trustee spends money in a way that violates the state's SSI or Medicaid rules, the beneficiary could be penalized with a loss of benefits.
"What is necessary to tell our relatives to keep in mind when leaving our children money in their will?"
It's a great idea to tell anyone who might have named your child in their own plan about the special needs trust. That's also a good reason why your special needs trust should be a separate document with a name of its own: So that they can name the trust in their own plans and leave money to the special needs trust.
"What are the financial advantages/disadvantages to setting up a special needs trust? For example, if we put money into it now, would we be able to take it out later if we needed it?"
The only advantage to putting money into a SNT while you are alive is if you want that money out of your estate for tax purposes. If your trust is revocable and you put money in it, you can take it out, but there is no advantage to putting the money in. If your trust is irrevocable, there is an estate tax advantage to putting money in but you cannot take it out later for yourself.
"Is a special needs trust included as part of our assets? If so, would it affect our family receiving financial assistance?"
A properly drafted special needs trust is not part of your assets or your child's assets, for purposes of receiving financial assistance.
Photo by Stefano Agosti
Wednesday, August 19, 2009
Some of you may have heard about Hassani Campbell, the missing five-year-old boy with cerebral palsy from Oakland, California. The story has been haunting me. His beautiful face has been haunting me. Jo has a really smart post today about media bias toward cerebral palsy. She notes that the press has told the public to look for a little boy with metal braces on his legs, but points out that SMO braces (the kind Hassani has) are not visible with shoes, and that kids with these braces often walk just like any other kid. So people would think they should be looking for a child with a noticeable limp and noticeable braces, when, in fact, Hassani looks like any other kid.
This bias is so prevalent. When I tell people that Max has cerebral palsy, many automatically assume he is in a wheelchair. I have to help them understand that cerebral palsy comes in many forms. Max's legs are the least affected part of his body; his arms, oral-motor skills and cognition are the most affected. Conversely, there is a boy in Max's school who is completely wheelchair bound but who is brilliant.
Tonight, I am thinking of Hassani, and praying for his safe return.
Photo from Oakland Police Department
So, the thing about having a kid with special needs is, you're never satisfied. Of course, when they first do something you've been waiting and praying and waiting for them to do, you're ecstatic. You do a happy dance (me, I'm a screecher), praise them like crazy, call your friends and family, blog about it, alert the press.
But soon afterward, you're wanting that next success to happen. You're impatient for it. That last achievement is left in the dust as your hopes are roaring off to the Next Big Thing.
I so want Max to be potty-trained. I am also dying for him to learn how to drink through a straw (here he is, pretending with my favorite way to waste money). Using a straw will be a huge step toward better tongue and breath control (critical for speech), but it'll also be a giant step toward independence. I'm not quite ready for him to start drinking coffee yet, though. One hypercaffeinated person in this house is enough.
What's next on your wish list for your child?
Tuesday, August 18, 2009
Thanks again for the nice comments on the last post. Lurkers and Dave, that wasn't so hard, was it? Hee, hee.
We have a whirlwind of a week coming up: We're going to Hersheypark Thursday, then Sunday we're headed to Duke University for the stem cell therapy. May I just say, OMG! I didn't think I'd have challenges over at Hershey, chocolate bars don't tempt me, but today someone told me they make Reese's Peanut Butter Cups. This could be trouble. I think I am going to tell all of you exactly what I weigh, so that will be a deterrent for me to OD on them.
Um, maybe not. Wait, I know, Max! Let's talk about Max! He had a blast at the pool this weekend, a lady was there doing face-painting. Max went right to the front of the line. She asked the other kids if they minded, and they didn't.
I am OK with Max getting special treatment when it's truly necessary—like at Disney, the crowded lines wigged him out, so the special passes made sense. But when there are three kids waiting to get their faces painted and Max cuts the line, that's not OK. People think he's cute and they feel bad for him, so they grant him these favors. But Max needs to learn manners and patience; I don't want him to grow up to be the world's most obnoxious person with cerebral palsy. He also needs to learn that he IS like other kids. Nor do I want them to see him as an "other," or resent him.
So, I told Max he had to wait his turn. And he did. Then he pointed to the cupcake picture and the purple paint tube and the lady painted a purple cupcake on one of his hands.
Then he pointed to the picture of the fish, and she painted a fish on his other hand.
Then he pointed to the picture of the cupcake again and touched his face, so Max got a cupcake on his face.
Boy, was he happy.
Then I said, "Say thank you!" and he said something that sounded pretty close to it.
And boy, was I happy.
Sunday, August 16, 2009
So, how's the blog thing going?
Love it. It's just slightly less addictive than drugs. Not that I would know anything about drugs. We saw the movie Julie and Julia tonight. It's about the wonderful writer Julie Powell and her year of making every single recipe in Julia Child's Mastering The Art of French Cooking. She did a blog about it, and suddenly, I was newly inspired to blog. And kinda-sorta inspired to start cooking, too, although blogging seems so much easier than French cooking. I've messed up hardboiled eggs and, sadly, I am not joking.
Do I really write posts so late at night?
Yup. It's the only time I have. Once in a while, I set them to go up at a certain time, to keep things consistent. Just in case, you know, there are people who are sitting by their computers at 12:22 a.m. breathlessly awaiting my latest post.
Do I write all of my own posts?
Of course, although Britney Spears has ghostwritten a few.
What's the hardest part about doing a blog?
Wondering who's reading it. I have a bunch of readers and not nearly as many commenters (hi, lurkers!). Comments make you feel like you're not blogging into the void. The other hard part of blogging is resisting impulses to joke about my mother-in-law, though I've done a pretty good job of holding back.
Am I really as upbeat as I seem?
Not quite, which is why I use Blogger's "Personality Plus!" widget. It automatically infuses my blog with humor and optimism and jokes about my mother-in-law, which I have to go back and delete.
What's kinda disappointing about blogging?
Feeling like parents of typical kids ignore this blog. And not hearing from Britney Spears.
Is Max really doing as well as I make it seem on this blog?
Pretty much. I mean, listen, the boy has cerebral palsy. His right hand? He doesn't use it that much. It's a struggle for him to articulate words. He can't chew solids so well. He's not yet potty-trained. He drools. These are the realities of his condition. But look at him. He walks. He communicates. He is bright. He is determined. He defies the doomsaying doctors at the NICU every single day of his existence. Actually, every single minute.
Why does my husband so rarely comment on this blog?
That is an excellent question, if I do say so myself. Dave?
Are my kids as cute in person as they appear in photos?
What's my favorite post?
Probably A Bill of Rights For Parents of Kids With Special Needs. And the post where I offered my mother-in-law as a giveaway, although nobody took her.
What scares me about blogging?
That someday, Max will go back and read these posts and feel that I invaded his privacy. That said, if he gets to the point where he is able to read, and he is able to use his hands well enough so that he can physically isolate his middle finger and give me the finger for violating his privacy, I will be the happiest girl in the world.
Saturday, August 15, 2009
Friday, August 14, 2009
Inspired by the post on time-saving tips, yesterday I cut out all small talk, didn't floss and cooked while driving. And I saved soooo much time!
Max was asleep when I got home from work, so for the first time in a while at bedtime I read only to Sabrina. It was a Sesame Street book in which each page featured a different letter of the alphabet and objects beginning with that letter. I watched her knit her little brow in concentration as she named the letters in every word. "B-u-c-k-e-t!" she said. "Very good!" I told her. "What does that spell?" She paused, eyed the picture and said "WATER!" triumphantly. I loved how she tried to fake it.
Sabrina got my book-love gene (I was a major library geek as a kid; I'd go weekly, check out the maximum number of books and get through every single one. Now I am just a geek). Dave calls her "Mini Me," and it's true. Like me, she's a talker. Like me, she's persistent (oh, OK, stubborn). Like me, she notices the most minute little things, like a hairline crack in our wood staircase. Like me, she has curls. Like me, she gets cranky when she's tired. Like me, Like me, she loves pickles. I could go on and on.
Max has plenty of me in him, too. He got my brown eyes, except his are way bigger. He's very social, he's enthusiastic about life, he loves to giggle, he adores ice-cream, he's got great energy, he doesn't take crap from anyone (anyone named Sabrina, that is). I am especially proud of this last trait; he may be a kid with special needs, but his spirit works just fine.
How do your kids look like you and act like you?
Thursday, August 13, 2009
I recently decided that, since I try to exist without sleep but for some reason my body insists on getting it, I needed some good time-saving ideas. So I reached out to a bunch of bloggers and experts who specialize in the topic, and I was flooded with a tsunami of tips. Happily, I'm already doing some of this stuff. I suspect the only real solution to my lack of time would be to give away the kids, perhaps Brad and Angelina wouldn't notice if I dropped them off. But, maybe I will try some new tips:
From Karyn Beach, a life coach and author of a program she's releasing next month called Get It Together Girl: A 28-Day Guide to Practical, Not Perfect, Organization:
* Don’t underestimate small blocks of time. You would be amazed how much you can get done in fifteen, ten or even five minutes. I love using the kitchen timer and making it into a game: “For the next five minutes, I’m going to pick up toys, straighten out the kitchen, put away clothes.” I guarantee it will be a major eye-opener. [NOTE FROM ME: I CHALLENGED MYSELF TO SEE HOW MANY TOYS I COULD CLEAN UP IN ONE MINUTE AND ALMOST IMPALED MYSELF WITH A KAZOO, SO PLEASE, DON'T GET TOO CRAZY HERE.]
* Use that five to ten minutes after the kids go to bed to lay out clothes (down to the underwear) for the next morning.
* Keep a bag in the backseat with any clothes or other items that need to be returned. Tape the receipts to each item and then when you are driving and happen to be in that area, you can make the return instead of planning and making a special trip or just not returning it.
These are from Lori Radun over at Momnificient, life coach and author of The Momnificent Life—Healthy and Balanced Living For Busy Moms:
* Don't be afraid to ask for help. Delegate tasks you don't like, or aren't especially good at. [NOTE FROM ME: WOULD ANYONE LIKE TO DO MY LAUNDRY? I'M NOT VERY GOOD AT IT. COME TO THINK OF IT, I'M ALSO NOT VERY GOOD AT CLEANING THE FLOORS. OR DOING ANY KIND OF HOUSEWORK. WOULD ANYONE MIND IF I DELEGATED ALL OF MY HOUSEWORK TO YOU?]
* Focus on what's most important to you. Lower your expectations for tasks/activities that aren't top priorities. [IF NOBODY IS WILLING TO LET ME DELEGATE MY HOUSEWORK TO THEM, THEN I WILL JUST HAVE TO LOWER MY EXPECTATIONS AND NOT CLEAN MY HOUSE FOR THE REST OF THE YEAR AND NOT CARE IF MY KIDS HAVE COOTIES.]
* Identify your non-negotiables to protect your time. For example, Friday night is family night. Set strong boundaries around those non-negotiables.
From Maureen Nuccitelli, a professional organizer in Boston who runs Harmonious Life Designs:
* Keep a pair of scissors in each major room in the house (and even in the car), out of the reach of your kids. Clip that article (then recycle the magazine), cut those tags (clothes can be put on immediately) or snip that hard-to-open package (no need to go downstairs to the kitchen drawer).
* Dedicate one drawer in the kitchen to lunchmaking. Put Ziploc bags, snacks, juice boxes and lunch bags all in one place to make lunches for the kids in a snap.
* Trying to squeeze in gym time? Have your gym bag already packed and ready to go. [NOTE FROM ME: I WOULD LOVE TO DELEGATE THE TASK OF WORKING OUT, TOO. WOULD ANY OF YOU BE UP FOR GETTING ME TIGHTER ABS?]
* Hang small dry-erase boards with markers inside the linen closet and pantry. As you run low on toothpaste or tuna mark it down on the respective boards. When you're ready to go shopping, check the dry erase boards, make your list and wipe them clean. [NOTE FROM ME: IF YOU'LL BE ABLE TO DO MY GROCERY-SHOPPING, TOO, I LIKE THE FIRM KIND OF PEACHES.]
From Louise Reilly Sacco at The Frugal Yankee:
* When you cook, double everything you can. It’s almost the same work to make a double batch of soup or stew. A large pan of lasagna, for instance, might take three minutes more than a small one. Either freeze the second batch, or serve it again a few days later, maybe with different sides. [NOTE FROM ME: IN CASE YOU ARE WONDERING, IT DOES NOT ACTUALLY SAVE ANY TIME TO MAKE DOUBLE BATCHES OF LEAN CUISINES.]
* Pay bills online through your bank. You can set it up so that some are paid automatically, maybe the electric and phone bills. You can establish a recurring payment so that the same amount is sent each month on your mortgage or a loan payment, but you don’t spend time writing and mailing checks. You even save a few cents on stamps and you may save on penalties and late fees because it’s simple to set up the payments so that bills are paid on time.
From Mary Davis, author of The Entrepreneurial Mom:
* Keep a "gift cabinet" stocked and ready! Fill it with things like scented candles, picture frames, holiday ornaments and gift certificates. This will become your first stop when you need a hostess gift, thank-you gift or teacher gift. Stock up on these things when they're on sale. Also keep gift bags and "thank you" cards in this same cabinet, for your personal one-stop shopping.
From Eileen Roth, author of Organizing for Dummies (no offense) and a national speaker:
* Ask someone—a friend, a spouse, a sitter—to give you time at least once a week. Make a list of things that would be "rewarding" for you. Note things that take five minutes, thirty minutes, one hour, half a day, a full day, a full weekend. Then you always have somethng to fall back on. It could be as simple as having a "slow" cup of your favorite drink (tea or coffee or hot chocolate, that is. One of my favorite rewards is hot apple cider. [NOTE FROM ME: ONE OF MY FAVORITE REWARDS IS DELEGATING MY HOUSEWORK.]
* Try to structure things into routines. The more routines you have, the faster things go. Do the wash the same day every week. Shop the same day. Have a "launching pad" for things that need to go out the door—library books, dry cleaning, school back packs, etc.
* Keep a tickler file of things you need to act on.
And wise advice from a comedian named Dan Nainan, who wasn't joking: "Turn off your television! The average American watches 28 hours of TV a week." [NOTE FROM ME: IF YOU DELEGATE THE TASK OF TURNING OFF THE TV TO YOUR HUSBAND WHILE YOU ARE SIMULTANEOUSLY MAKING DOUBLE BATCHES OF BAKED ZITI AND ORGANIZING THE LIVING ROOM WHILE CUTTING THINGS WITH THE SCISSORS YOU HAVE HANDY AND LOWERING YOUR EXPECTATIONS THAT YOUR HUSBAND WILL ACTUALLY TURN OFF THE TV, YOU WILL SAVE SO MUCH TIME THAT YOU WILL ACTUALLY NOT KNOW WHAT TO DO WITH YOURSELF.]
Now, go save yourself some time! And when you have lots extra to spare, send some of it to me, please.
Photo by Leo Reynolds
Wednesday, August 12, 2009
Thanks for the comments on yesterday's post about dumb stuff I waste money on; they helped me realize that I am far, far worse than I'd even thought. Like Insomniac Mummy and Debbie from Finding Normal, I am a sucker for getting the kids toys. Like Lianna, I buy Max bananas as if he were a primate or something, and then half of them end up rotting. Like Meredith from Templin Family, I stock up on Band-Aids, of the Princess and Cars variety. Like Tiff, I hoard photo frames. And like Dianne, when I'm fond of a t-shirt, I get it in several colors.
I hope you will all be here to comfort me when I someday spend my last cent on bananas or Band-Aids.
In other news, I still haven't given in to Max's repeated requests to have our car towed just so he can see it on a tow truck. If any of you happen to own a tow truck and are willing to drop by, just say the word.
Sabrina, who's four, continues to think she is the adult in our relationship. Dave called my cell last night as I was headed home from work, he'd taken the kids for ice-cream. "Tell Sabrina she can't eat Max's ice-cream," I said. "Mommy says you can't eat Max's ice-cream," Dave told Sabrina. "Mommy's just kidding," Sabrina informed him.
Last week I told her that Max is going to go to a special doctor soon (for stem cell therapy), and she'll be getting to go to a sleepover at my friend Wendy's house. She didn't ask too many questions, other than whether Max will be getting on a plane and could she bring her Ariel doll to the sleepover.
I know I said I wasn't going to get my hopes up too high, but they're inching up there. We've been getting encouraging e-mails from people as far away as Turkey and Australia who've gotten stem therapy for themselves or their kids. One reader, Lorraine, sent me this video about a boy I'd heard of, Dallas Hextell, who got a stem cell infusion at Duke (that's where we're going). It's incredible to watch. But Dallas is so young, it's hard to tell whether or not it was the stem cell infusion or natural development that helped him progress. See for yourself.
Last, words of gratitude for Eunice Kennedy Shriver, an amazing lady who founded the Special Olympics in 1968. Her advocacy for people with special needs helped bring them into mainstream America. And for that, I owe her. May she rest in peace.
Photo by Alistair Hall