My Extraordinary Kid

What makes your kid extraordinary isn’t just the epic stuff. It’s the little things. The small moments that maybe only you see — and quietly celebrate every day. Jack and I have had our ups and downs as of late. He is growing and maturing, and yet still holding onto childhood as much as possible. He is nearly 8, and caught between two stages in his young life. And at the same time, he is fighting cancer with his every breath.

Sometimes it’s all too much for him.

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Last week we had his friend over for a playdate. When it was time for the playdate to end, Jack wasn’t ready. He had a full on meltdown, declaring that it was unfair, that he didn’t want to be around me, and that no one understood how he felt. For the first time ever, he threatened to run away from home. When we dropped his friend off back home, Jack dashed out of the car and into his friend’s house – I had to pick him up and carry him back to the car (keep in mind I’m VERY pregnant).

On our way home, Jack said, “You probably don’t like me anymore.”

To which I replied, “Jack, of course I like you. I love you! We all say and do things we don’t mean sometimes. I will always love you, no matter what.”

Later on that evening he calmed down and apologized to me, unprompted. He then proposed a punishment for himself – perhaps he could have 3 hours of revoked iPad time. I told him I would think about it. Jack is generally so well behaved that I have very little experience with punishments!

All evening he hugged me spontaneously and repeatedly declared that he loved me. I told him I was so very glad that he was feeling better.

Experiences like these are hard on both of us, but they teach us a lot. Life is complicated and we are both still learning how to navigate it. Cancer has really amplified the everyday emotions we have to face, so we have to be stronger than ever and team up to face it together. I am constantly amazed by how Jack handles it all – he is truly extraordinary.

When you’re faced with the challenges that we are, it helps to have organizations out there like Stanford Children’s Health – the largest Bay Area healthcare provider with an exclusive focus on children and expectant women. Whether your visit is routine or rare, Stanford Children’s Health is committed to providing extraordinary care for healthier happy lives. In fact, Stanford Children’s Health and Lucile Packard Children’s Hospital Stanford has been the top-ranked children’s hospital in Northern California for over a decade.

Thanks to Stanford Children’s Health and their dedication to extraordinary care for extraordinary kids, I was able to create a slideshow celebrating my kiddo and all of his awesomeness. Check it out.

Your kid is extraordinary. Show them how much you enjoy every moment together by creating a special video of your own!

I was selected for this opportunity as a member of Clever Girls Collective and the content and opinions expressed here are all my own.

This Is How I Nest

I think it’s safe to say that I’m officially nesting. It looks a little different than I thought it would, though.

Rather than focusing on cleaning and organizing (although I’ve done a little off that, too), I’ve been working on getting projects completed. It started with creating a baby book using Project Life products (PL Baby Book example found here). That didn’t take long (since the baby isn’t here yet), so I moved onto hanging pictures on the walls.

We’ve lived in this house two years now as of last week and most of the walls were devoid of pictures even though I had a ton of stuff already framed. So I took care of that (pic 1 and pic 2).

Most recently I’ve been working on migrating photos from the albums that our dog destroyed when we first adopted him into new albums. I’m using Project Life for this, too – I had two photo albums full of pictures from my trip to England and France 10 years ago (10 years ago this month, even!), 8 pages worth of journaling, and a pack of souvenirs that I’d saved. I still have to transfer the more of the journaling into the book but I have all of the pictures and memorabilia set up in the album now. (David does not understand this at all – he thinks I’m spending way too much time putting together an album that I might take off the shelf and look at once a year or so. To him I say PFFFT.) I feel accomplished.

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On the more traditional nesting front, this weekend we visited a furniture store that just opened up nearby and took care of getting one of the TOP things on my list of “I NEED this for the baby!” – a rocker recliner. Initially when I mentioned that I wanted one, David was totally opposed (due to the cost and the space it requires) but I ignored him because I’ve been through this before and I NEED a comfortable chair for rocking and nursing a newborn baby for hours on end! So he good-naturedly accompanied me to the furniture store and watched the World Cup while I negotiated with the salesman and made the purchase. Et voila:

chair

Now I’m focused on trying to find a place within a few hours of us to have a nice little getaway before the baby is born. So far this task has proved to be very challenging, as August in northern California means an influx of tourists and tons of local events (making everything much more expensive!). We don’t want to spend a ton of money but we really want to do SOMETHING before the baby is born (especially since our anniversary is 6 days after my due date). Hopefully we’ll stumble upon a deal or a quaint, little-known town to visit.

Or maybe a generous benefactor will come out of the woodwork and offer us something. WILL BLOG FOR VACATION! (Don’t worry, I’m not holding my breath on that one!)

Summer Tastes Like Freedom

dance-32193_640School’s out for the summer! YEAH!

This is big for us. Probably bigger (and better) than it is for most households. See, during the school year, Jack spends weekdays at our house and then all but one weekend a month with his dad (who lives an hour away). In the summer the schedule flips, so we will actually get to enjoy weekends and have leisure time with Jack on a regular basis! We’ll get to have play dates with his friends, too.

Not to mention that for the next two months our household will have a break from:

  • Homework
  • Packing lunches (with foods Jack hasn’t gotten sick of)
  • Strict bedtimes
  • Dragging Jack out of bed for school
  • Worrying about Jack going to bed on time
  • Being late or calling into work due to Jack feeling ill
  • The small annoyance of Jack’s teacher spelling his last name wrong regularly (it drives me NUTS)

David and I will definitely be enjoying the quiet time on weekdays, too. With our baby due at the end of August, this is going to be the last couple of months where we get to have stretches of time alone together without any kids to take care of. We will enjoy that little perk of shared custody while we can!

We have an exciting summer ahead of us for other reasons, as well. Jack’s 8th birthday is July 13. His Make-a-Wish is underway and he should have a completed TARDIS console in his room by the end of summer. In early August Jack is scheduled to go to Camp Okizu’s oncology summer camp where he’ll be away from his parents for a whole week – EEP. We are nervous about it and we’re not sure he’ll actually stay the whole week, but we figure we’ll give it a try. We think it will be good for him to get a little independence.

August will bring our baby and a new school year – Jack will start the 3rd grade. And then things will get messy (messier) again.

So for now, I’m going to try to enjoy a little bit of freedom!

So Many Experts, So Few Explanations

We’ve seen quite a few doctors over the last week to address Jack’s recent paralysis incident and an increase in headaches that don’t want to go away. Two pediatrician visits, one neurology visit, and lots of phone calls have occured. We have one more appointment Friday with the eye doctor just to make sure things are okay.

None of the doctors had answers for us. No one knows what caused the paralysis and the headaches seem to be tension headaches. Everything looks benign and so we will do nothing for now and hope it goes away (and the paralysis incident doesn’t recur). Perhaps being out of school will help.

Jack’s pediatrician has been great during all of this. He is really good at following up on what is going on with Jack even when we don’t reach out to him directly (usually we call the oncology clinic because we tend to assume whatever is happening is probably due to chemo). He took me aside after the appointment yesterday to talk with me privately, away from Jack. He wanted to know how I was doing and let me know that that we could come to him anytime – that he would figure out what is going on so that we don’t have to. He even went so far as to say he’d noticed that the oncology clinic seems to feel that I’m a worry wart since the things I report that are happening seem to differ from what his dad’s household reports. He doesn’t seem to share this opinion with them, and understands that kids are unreliable when reporting illness – and this is especially true with Jack.

To give an example, if I reported to the docs that “Jack was feeling weak” – it would be because Jack told me that he felt like a chicken filled with whipped cream instead of bones. Jack’s dad would usually not think anything of that kind of statement coming from Jack, other than that Jack is a bit goofy and unique in the way he describes himself. If Jack reports that he got a weird shivery feeling (but he doesn’t feel cold) – I would check his temperature (more often than not he’d have a temp, even if it was slight, or it would be an early sign he was coming down with a cold). Jack’s dad would just assume he was chilly.

I don’t know if this occurs because Jack spends more time with me or just that he tells me more about his feelings or maybe I am some kind of master decipherer! But unfortunately the differences in what is reported between households has the oncologist questioning ME instead of his dad. And I guess maybe they prefer to hear that Jack is doing fine on chemo.

This is partly why David is taking Jack to more appointments these days – to show that it’s not just me (and also to spare me the stress of dealing with these jerks). But it seems that a lot of the damage has been done in the oncology office’s eyes, so we just deal.

In any case, the talk with the pediatrician yesterday was both reassuring (that we have SOMEONE who understands what is going on and who will take the lead on monitoring Jack’s care from a holistic perspective) and frustrating. It’s pretty upsetting to feel that I am not being respected by my son’s oncologist, someone I have to rely on to cure and keep my son alive, and it seems the pregnancy hormones have me a bit more sensitive when it comes to feeling judged negatively as a parent. I’m having a hard time shaking it now that I’ve been reminded.

David and I avoided asking Jack how he was feeling this morning and just sent him off to school, fingers crossed that he would last the day. And it seems he has. There are only 7 more days of school left until summer break, so hopefully we can make it through and we will all get a break from the grind.

Google Shopping Express Pretty Much Rocks

Note: This is a sponsored blog post. In exchange for blogging about my experience with Google Shopping Express, I received a free trial membership and a credit to use the service. All opinions expressed are my own.

With the gazillion appointments we have to manage Jack’s health and this year’s addition of prenatal check ups for me (in addition to the regular life stuff like work), my time and energy have become even more limited as of late. Thankfully I live in an urban area where convenience is highly valued. And since Google is practically right in my backyard, Google Shopping Express recently launched in my area.

From Google:

Available throughout the Bay Area, from San Francisco to San Jose, Google Shopping Express is a same-day delivery service that allows you to conveniently shop from stores like Target, Raley’s, Nob Hill Foods, and Toy “R” Us in one online location. Whether you need a last minute pack of diapers to get through the weekend or a few forgotten ingredients to prepare dinner, Google Shopping Express can help fulfill any new parent’s shopping needs.

They have been focusing on parents but let me tell ya, this service is fantastic for any city dweller!

Last week both David and I were battling a horrible cold and Jack’s health started to decline, as well. We needed a few things that couldn’t be bought within a 10 minute drive of our home (even if we had the time and energy to make it to the store), so I looked to Google Shopping Express to help. I was able to place an order for a few things from a couple different stores and choose to have it delivered to my office in San Francisco. From Target, I picked alcohol prep pads, ZonePerfect Kidz Nutrition Bars, and a new screen protector for my iPhone. At the same time, I ordered a Snoogle Body Pillow from Babies R Us (side note: if you are pregnant, get a Snoogle! I have been sleeping SO MUCH BETTER!). Everything was delivered to my office in lightweight packaging within the 4-hour window I’d chosen. It took less than 10 minutes to place the order and to grab it from reception at work – a HUGE time saver over driving to the two different stores, locating the products in the store (and hoping they were in stock), waiting in line to make the purchase, and driving home again.

Maybe you love the whole shopping experience, but I DO NOT. I would much rather nap than go to the store.

The prices through Google Shopping Express are exactly what you would find in-store and you can input your membership number for the stores (like Toys R Us) in order to get your loyalty rewards when you order. If you’re buying commonly sold items like groceries, you can compare prices from different stores (Target vs. Whole Foods vs. Smart N Final vs. Costco – yes, they even have Costco!) so you don’t have to worry about paying more just for the convenience of having the items delivered and you can save a bit of money without trekking to a whole other store.

The whole experience made me SO HAPPY. The only thing that could have made it better would be if they delivered to my home in the East Bay – hopefully that option will be available in the future (especially by the time my new baby is born!).

So go, try it out! Google Shopping Express is currently offering new users $10 off the first order as well as 6 months of free, unlimited same-day delivery when you sign up for the free membership. You can order online or download the iOS or Google Play app.

If A Kid Falls Over And No One Is There to Hear It

Jack and I both stayed home yesterday because we’re fighting off some sort of nasty cold. He is fairly better than I am so far, which is ironic considering his suppressed immune system. In between looking mopey and blah, he was eating NON-STOP – just like being on steroids except he hasn’t taken steroids for a week and even then he didn’t eat like he did yesterday. Nothing was satisfying him.

Early in the evening as I was picking up the living room and dining room areas in preparation for a visit from Make-A-Wish, I heard some muffled noises coming from Jack’s bedroom where he was drawing. I called out to ask what was going on but didn’t get a response. A few seconds later, I heard more muffled noise and I asked Jack to use his words because I couldn’t hear him, even as I started walking down the hall toward his bedroom.

When I got there, he was starting to sit up from where it looked like he’d been laying his head against the bean bag chair next to him. Upon seeing the panicked look in his eyes and hearing his heavy breathing, I asked if he was okay. He told me he’d fallen over and couldn’t move his body. His face had landed right in the folds of the bean bag chair and he had felt like he was suffocating. And again, he couldn’t move to get himself more air.

His forehead was sweaty but he didn’t have a fever. Nothing was hurting him, but his heart was pounding with fear.

I called the pediatric oncologist on-call, who asked a few questions about any pains he might be having. She suggested maybe he was dehydrated and said we should have him drink more water and keep an eye on him and his temperature.

The rest of the night he seemed fine, although I did go in and check to make sure he was still breathing before I went to bed for the night. I ran his regularly scheduled labs this morning and the results aren’t terrible – he has an ANC of 792, so he’s not neutropenic, and the rest of his results don’t indicate that he needs a transfusion or anything.

Just…weird and a bit worrisome. My kid was suddenly, temporarily paralyzed and it landed him in a situation where he couldn’t breathe. I can’t even wrap my head around that.

Random Notes – aka CliffsBlog

After today, Jack has three lumbar punctures left before the end of treatment (March 2015). That makes me happy. I’m trying to focus on that and not the fact that yesterday, I noticed Jack has tiny scars on his lower back from all the lumbar punctures over the last couple of years.

I’m 24 weeks pregnant and I’ve gained 3 lbs total. I don’t know what to think about that! (When I was pregnant with Jack, I’d gained 20 lbs by this point.) The baby is clearly growing, though, so my doctor says it’s fine.

We haven’t decided on a name for the baby yet. I am (irrationally) worried this baby will never have a name. It’s not that there are a lack of names out there but nothing seems to be “the one.” It feels weird to not know what this baby’s name will be.

Make-a-Wish is coming out to our house on May 22nd to start the interior design phase of Jack’s room makeover! Yay!!!

So far, Jack is physically doing okay with the increase to his chemotherapy dose. Mentally, things aren’t so great and his anxiety has ramped up along with homework (math) difficulties. We found out at his appointment today that the chemotherapy dose is being increased yet again (that makes increases 3 weeks in a row) because he grew a bit since he was last in. And his ANC came back SUPER high, which really made me nervous at first but the nurse case manager said that it’s likely just a sign that he has finally gotten over whatever hit him so hard last August. So yay for that!

We are very much looking forward to the end of the school year in FIVE WEEKS.

Jack is wearing new shoes! He actually has two new pairs! He hasn’t put those freaking fur-lined boots on in over a week. Instead he’s trading off between Crocs and a pair of New Balance sandals. He wears them both with socks, but hey! I’ll take it!!!

This weekend we’re going to Camp Okizu (a free camp for families dealing with cancer). That will be a nice break for us and allow us some time to connect with other families in the cancer community. We’ve heard a lot about how people meet other families at the hospital/clinic but that hasn’t been the case for us. Generally the patients don’t mingle at Kaiser. We’re rarely in the waiting room with other families and the clinic booths are separated by curtains. So anyway, it’s nice to be able to chat with other families at camp who’re going through the same things as us.

Lastly, I had a wonderful Mother’s Day. David brought me fresh Starbucks, a donut, and made me breakfast in bed. He pulled some poppies from our backyard and put them in a vase for me, as well. I got to nap a bunch and then I took Jack to Build-a-Bear. We finished the day off by having Japanese delivery for dinner and watching Game of Thrones. I am cherishing the relaxing day because next year will likely be more chaotic with the baby in the house!

Aural Update

Is that a word – aural? I’m not sure but it is amusing to me so I’m going with it.

In case you haven’t guessed (or you’re new here), this is in reference to my post Lions and Tigers and Auras, Oh My! I thought an update might be in order.

First, Jack spent a weekend with his dad and step-mom and during his time there, his step-mom asked him how long he’s been seeing colors around people. Jack’s answer was, “Since I got my new glasses.” And we all thought, AH HA!

I did some research and found out this is called chromatic aberration, or “color ghosting” around the edges of objects. It is much more common in polycarbonate lenses (which are generally what they give to children because they are more durable) that have stronger prescriptions. Some people don’t notice it, but Jack does. Apparently.

In addition to learning this valuable information, I met with Jack’s therapist and her supervisor – both to get my questions answered and get an update on Jack’s progress in therapy. We all agreed that Jack is an extra-empathetic and intuitive kid. We also agreed that he is in need of tools to help him learn how to distance himself from the emotions of those around him so that he doesn’t absorb them, which has caused him problems at school. He comes by this naturally – I deal with it, as well. This ‘ability’ has led me to refer to myself as a ‘mood sponge’ and it can be very difficult for me to differentiate between my own feelings and those of various highly emotional people I might spend time with and care about. It can be very confusing when I get depressed out of nowhere and have no clue as to why – and then it all becomes clear when a family member or friend that I’ve been around a lot admits they’ve been struggling with depression. Anyway, I haven’t done a great job of learning how to handle this, so it’s not something I can help Jack with. Jack’s therapist, however, can help him with that as part of their regular therapy.

Regarding the whole auras and Intuitive thing – the supervising therapist clarified that she had not been suggesting that Jack meet with an Intuitive – merely, it was a resource for me (and his other parents) if we wanted some additional guidance in understanding a highly empathetic child. None of that is part of the therapy he is getting from them; it’s just extra information that we can do with what we will. I expressed our general discomfort with that route and let both therapists know that we’d like to focus on the typical therapeutic methods of helping Jack to learn to put up boundaries, which they are more than happy to do. Whew.

I didn’t bother arguing that I don’t think Jack can actually see auras or explaining about the chromatic aberration thing. Essentially, the whys of his empathetic nature aren’t so important to me – I don’t think we can really know why he is the way he is. What is really important is that he learns how to utilize his empathy to his own benefit instead of being constantly exhausted by the emotions of others around him.

Hopefully I can learn that, too! It would sure make my life easier.

Last but not least, THANK YOU to everyone who provided input on my post. It was very helpful to hear a variety of perspectives on this subject. I really appreciate it. My friend Jana recommended I get the book The Highly Intuitive Child: A Guide to Understanding and Parenting Unusually Sensitive and Empathic Children (that’s an affiliate link). I’ve started reading through it and so far it’s RIGHT ON. So if you’ve noticed your own child seems extra sensitive to the world around him/her and you’re looking for some parenting tips, go check it out!

Over Halfway There

I’m in my 22nd week of pregnancy now. We’re over halfway there! We had the baby’s anatomy scan about two weeks ago and it went pretty well. The baby was not being all that cooperative – as I had thought, the kid prefers to tuck himself deep into my pelvis, hence the hip and leg pain I’ve been having for a while now. It took some work on the ultrasound tech’s part to find out the gender because our baby’s little pretzel legs kept getting in the way, but about halfway through we saw undeniable evidence that this one is a boy.

Jack totally called it a few days prior when he said, “I want it to be a girl, but I think it will be a boy.”

I had mixed feelings upon learning the gender, to be honest. I love having a boy already and it seems like boys are a bit easier to raise (with lower-pitched voices). At the same time, my boy is very attached to me and I know girls tend to be more attached to their dads – it would be nice to have someone in the house not obsessed with me (we also have three animals that are males and all gravitate to me)! There are no guarantees, of course. Who knows, maybe this kid will think I’m boring as hell.

Anyway, I’ve gotten used to the idea of having another boy now and all is well on that front.

So, with that, we’ve stopped disagreeing about girl names and turned our focus to boys names. We have two picked out that are tied for first place but I keep hearing one of them pop up all over the place so I don’t know that we’ll go with it. I can’t quite cross it off the list, though.

Last night I dreamed about the baby and saw his face. Unfortunately that didn’t help sway my opinion of either name. Bah! (Maybe I should put the baby’s name up to the a vote – ha!) Hopefully it will all become clear when the little dude joins us in the outside world.

David finally felt the baby move over the weekend! He’s been moving around for weeks but the kicks were inconsistent and I think maybe the placenta is toward my back or something. The kid is getting stronger, though, and loves to be active right at bedtime. Maybe that’s why I continue to suffer from fatigue, headaches, and SERIOUS pregnancy brain!

Because of the fatigue, headaches, pregnancy brain, and overall less patience with the world around me, I’m in hibernation mode. I’ve been making dumb mistakes and forgetting a lot of things, which is super frustrating to me. I’m an administrative assistant, so the fact that I can’t trust myself and must triple-check my work is screwing with my self-esteem! But at least I’m flighty enough to only worry about it for five minutes at a time…

That’s the latest on this pregnancy business. Any questions?

Lions and Tigers and Auras, Oh My!

A few months ago Jack started seeing an intern therapist, D, who is supervised by a licensed Marriage & Family Therapist, MR.  MR was recommended to us by a friend and has a ton of experience working with kids. We see her intern because she operates on a sliding scale and is much more affordable (since this is not covered by insurance – our HMO insurance has very limited mental health services).

So Jack meets with D every week, who then discusses his case with MR and gets signed off for her internship hours. Jack loves D and it seems like therapy in general has been really helpful to him. He told me just this week that when he got in trouble at school recently, he decided he wouldn’t punish himself and instead would sit with his feelings about it! This is HUGE.

Anyway, David took Jack to his regularly scheduled therapy appointment this week. When they got there, MR was in the waiting room and she asked, “Jack, can you see colors around me?” Jack said yes and identified two colors. MR looked at David and said she would explain more after Jack left the room. So Jack went into the office with D for his therapy session, and MR proceeded to tell David that Jack is a very special kid, has a rare ability to see auras/chakras, and that he was put on this earth for a purpose. She said she could refer us to an Intuitive who could teach Jack how to handle these abilities.

AURAS? An Intuitive? Whaaaaa? *blink blink*

What is your reaction? Ours was utter shock. We aren’t spiritual in the least and this is way out of our comfort zone!

Later that night, I casually asked Jack a bit about it (I didn’t want to make him feel weird about it OR steer the conversation) and he said he does see colors around people – but not all people. He said he didn’t know what it meant, although he said that he saw blue and green around me and that he thought that green probably meant I was interested in what other people are interested in. I asked if he’d ever talked to anybody about this before and he said no – not until yesterday when he talked to D about it. I don’t know if she brought it up or if it was on his mind because MR had asked that question.

David and I are struggling with this whole thing and are VERY skeptical. I personally don’t like the idea of taking Jack to see an Intuitive – that doesn’t seem right at 7 years old! Even if I didn’t doubt that it would be helpful, it’s definitely a spiritual approach and I want him to be old enough to think critically about these matters before he receives any sort of instruction on them. We treat religion in the same manner – beliefs are very personal and I’d like Jack to develop those on his own (as much as possible) when he is more mature and not as susceptible to suggestion.

We don’t necessarily think we should just change therapists, though – he is helped quite a bit by D and after seeing her for two months or so now, he’s developed trust and is opening up to her more. If we changed therapists that process would need to be restarted. Plus, we don’t even know if D shares this line of thinking or if it’s something she would discuss in her therapy sessions with Jack.

ne thought David and I had is that if, in fact, Jack DOES see colors, there is another possible explanation (a scientific explanation) that makes more sense to us. Jack is clearly an emotional and sensitive kid, and there is no doubt he is intuitive, as well. There is something called Emotional Synesthesia, where a person’s neurological system is wired so that their senses are crossed – and that causes a person to perceive colors when they have an emotional response to something or someone. The research on synesthesia, especially on that specific type, is still very new, and from what I can see there aren’t resources for it as of yet – just studies to validate that it’s real and trying to figure out what it means and why it occurs.

I also don’t know that it matters whether he has this or not! It doesn’t seem to be a problem for him (unless that is why he has such a difficult time dealing with other kids at school getting in trouble and his teacher being in a bad mood). There doesn’t seem to be anything we can do about it other than to be accepting. And maybe nothing needs to be done – maybe this is just a special ability that makes Jack extra awesome. ‘Cause we all know Jack is awesome!

Regardless of her years of experience in therapy, MR could be completely full of crap. Or she could be interpreting something that is actually a neurological condition in a spiritual way, rather than a scientific one. Maybe (BIG MAYBE), auras exist and Jack can see them and an Intuitive can help him leverage that ability. I really don’t know.

This is such a strange situation for us and we still haven’t gotten over the initial “Whaaaaa?” reaction. I mean, is this real life? As much as we love science fiction and fantasy, this feels a little too surreal for us.

I would love, love, love to hear additional perspectives on this! What would YOU do if your child’s therapist told you that he/she has a special ability and recommended a completely foreign path to explore it? Especially if your child says he has this ability, as well? Would you explore a spiritual situation for your child that differs wildly from your own?